Sonova’s Shares Shake and AG Bell Quakes or Rattles and Rolls?

Sonova’s Advanced Bionic announced the WORLD WIDE recall of its HiRes 90K cochlear implants.

(from Advanced Bionic’s press release)  “This action is being taken in response to two confirmed instances where the product experienced a malfunction requiring explanation. These recipients experienced severe pain, overly loud sounds and/or shocking sensations at 8-10 days after initial activation of their device.”

Sonova (the Swiss billion dollar hearing devices business that brought Advanced Bionics recently) sent out press releases to multiple business publications basically saying “we will have to see see what this means means to our profit line.”  The Wall Street Journal reported promptly the same day that immediate impacts were already being seen “The news triggered a sharp drop in Sonova’s share price.”

The Wall Street article is really important so i hope folks will take the time to read it.

Bloomberg Businessweek also reports the drop in shares

The Australian Business with the Wall Street Journal reports predictions that Cochlear co. will take over the CI market in Advanced Bionics absence

NOTE: there is a pro-CI blogsite that has new info up (nov 27, 2010) re: the recent recall and the “failing hot” of some of the AB HiRes 90K CIs.

UPDATE: re Advanced Bionics Failing Hot CIs from the Hearing Blog Site

From Advanced Bionics letter to HiRes 90K CI recipients or parents:

In the unlikely event that this symptom occurs, continued device use may lead to damage to the inner ear and/or the auditory nerve. If you or your child experience pain related to implant use, remove the external equipment immediately and contact your cochlear implant clinician to schedule an appointment. If the evaluation of your device identifies this problem, device replacement is advised.

So a couple of questions:

1. how do you recall a device that is implanted in people’s heads?

2. how adversely affected were these two individuals to warrant a world wide recall?

3. how many other implants have caused trouble for their users? (the Advanced Bionics recall letter to recipients mentions 9 other cases)  This is like Advanced Bionics THIRD recall??? How many folks have junked their Cochlear Implants?  How many cochlear implants have failed without causing physical harm?

4. how come we cant get concrete figures and facts re: faulty CIs?

5. how come the A G Bell Association still has Advanced Bionics and Cochlear Americas as its Circle Alliance Founding Partners?

We know they are big companies but is this really the company AG Bell wants to keep?

The more we learn the more we wonder.

Scroll Down to see AG Bell Circle Alliance Founding Partners

Note: What is our moral obligation when we learn of unethical dealings of Cochlear Implants Cos. (manufacturers and distributors) and agencies serving Deaf people?   The ear business and corporate greed in general have shown that when folks don’t pay attention bad things happen.  It is good that Sonova is recalling these devices but we do have to examine the costs and complication of the recall in-and-of-itself – its not as easy as driving ur Toyota to the dealer

There is also the fact that Sonova is not clear in who is to cover the cost of removing the CIs (very costly and risky procedure).

My heart is with the families who are facing a decision of what to do if their infant and/or child or they themselves have a Sonova Advanced Bionic HiRes 90K

Audism Free America (AFA) has a petition out calling for an independent and impartial investigations into the safety of cochlear implants.  Feel free to review the petition and if you agree sign and circulate to friends and family.  ASL Version

The families deserve answers.

NOTE: Weitz & Luxenberg is a law firm that already successfully sued Advanced Bionics in the past for faulty CIs  (sealant leak etc).  The famous Erin Brockovich is affiliated with this firm and there is a Deaf lawyer who has a CI that has handled the CI lawsuits – Teresa Curtin – see this link for past suits and a vlog with Teresa’s contact information at the end of the video.

——

Older blog entry from Mishka Zena “FDA: One C.I. Corporation Endangering Deaf People

http://www.mishkazena.com/2008/03/30/fda-one-ci-corporation-endangering-deaf-people/

Peace,

Patti

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462 Comments (+add yours?)

  1. Candy
    Nov 24, 2010 @ 20:47:42

    AB voluntarily recalled after two confirmed case. So, their credibility has increased ten-fold. This quashes the assumptions of those deaf people who are Anti-CI, claiming that cochlear companies are hiding things. This proves that AB cares about people. Only two confirmed cases and they VOLUNTARILY recalled. Impressive. There’s more, but I will address them on my blog.

    Reading your post, it would seem that you’re more trying to discredit these cochlear companies rather than being concerned citizen ensuring these AB who have this specific implant are aware of the recall. Your interest in this area would be more of discrediting the CI companies since you have no vested interest in this area, therefore, I consider your post biased. A more unbiased post would be by those individuals or parents of children with cochlear implants. Just sayin’

  2. Dianrez
    Nov 24, 2010 @ 21:26:43

    Having no vested interest would make one less likely to be biased, rather than more likely. This writer is asking for numbers and statistics, where none have been ever available.

    The fact that we have seen injuries and deaths in the past connected with CIs begs the question: how many is too many? Why did it take four or six deaths to modify the surgical procedure using positioners? Why did it take two failures to issue a worldwide recall? Did they wait for actual failures to show up before acting on any problems that might have been hinted at earlier?

    I keep wondering about the limits of tolerance in products such as automobiles, medicines and medical devices. If 990 people are helped by an item, and 10 out of a thousand are harmed by it, is that an acceptable limit of tolerance? Is 0.1 percent adverse effects acceptable? If there are 300 thousand cochlear implants to date, 0.1 percent means 300 people were harmed.

    Looking at it from an industrial viewpoint, one can easily say it is worth it for most people. However, if it happens to be yourself, or your child that is in the small number that are harmed, THAT is one too many.

    Perfection is within technological possibility. We must demand it, and complete accountability at every step of the way. Asking questions like those here is our responsibility.

  3. Don G.
    Nov 24, 2010 @ 22:20:21

    Gina: You think BEING a CI user makes one LESS biased, especially if one is a “successful” user? You really need to learn a thing or two about research and statistical methodologies.

    Patti has no vested interest, except the well-being of Deaf children and adults. Where’s the bias in that? Her questions are valid. So are D-rez’s. Face it, cochlear corporations (like ANY corporation) is out to make MONEY. Human needs and considerations, as well as ethical considerations are secondary, if not tertiary, to the main goal of making MONEY.

    Remember also we are dealing with REPORTED cases. How many more UNREPORTED cases are out there?

  4. handeyes
    Nov 24, 2010 @ 22:22:43

    hi candy

    i did not and do not claim to be unbiased or neutral. You may attempt to discredit me but a few words of caution – recently when u have tried to do so instead, u end up making some of ur own biases more self-evident for all to see. (ie see the bashing against a Deaf mom u allowed in ur thread and the witch hunt) so i wont be visiting ur place. Im pretty much limiting myself to this space and maybe a few other places where folks put forth truth and love.

    Now in my ever ending search for common ground – i see a place that we both agree on – it is good that Sovona Advanced Bionics did recall this implant. I did say that up above so not sure why u r repeating except maybe its a habit from hanging with semi-Deaf folks like meself or maybe its ur way to try to discredit me in me own place but me… im gonna say its cuz u wanted to point out our common ground – we both AGREE (ya hoo miracles of miracles – just in time for hanukah soon) we agree that it is good they recalled the harmful CI

    i wonder if we can venture for some more common ground agreements or at least agree to disagree but first i gotta know if u agree or not:
    1. isnt it odd that Sovona said if more come down the pike they will think about covering the cost of removal – shouldnt they automatically be doing that out of the goodness of their hearts?
    2. isnt it odd that when folks in the States advocate for insurance co. be mandated to cover CIs they dont also add that they be mandated to cover their removal as needed?
    3. isnt it odd that digital hearing aids and CIs are so OUTRAGEOUSLY expensive and there is such a HUGE profit from such devices?

    can we agree on those items? u can reword them as u see fit

    thanks and wishing u and urs a very very very happy Thanksgiving

    Much peace

    patti

  5. handeyes
    Nov 24, 2010 @ 22:35:53

    Diane
    really appreciate what u have written

    it is interesting – when i asked someone who has a CI and is also very familiar with the suits against Advanced Bionics why the co. was still running if so many problems – their reply was “if it was a hip replacement co or a placemaker co – they would have been shut down but since for many leaving a child deaf is tantamount to death, they go forth with the risks hoping for the best.

    this shocked me

    and saddens me

    i studied a bit about corporate deviance and it is astounding what white collar crime does and gets away with – what Advanced Bionics and Cochlear Americas have done – it seems – is have profit supersede safety (AB) and/or ethics (CA) and that aint cool

    yes there are many many other cases that we do not know about

    not sure if folks have been following the whole Health Industry and Insurance corporations various unethical tactics to push Michael Moore and his film Sicko off a cliff but WOW – it just shows how money and power often corrupt

    Pls note all: i have not been calling for a moratorium on CIs because i feel it is imperative that we have the facts first to determine if a moratorium is in order. I know plenty of folks who feel other wise. I dont think this makes me more credible or unbiased – i am just sharing it as an FYI so u know i know that not all of them are bad or dangerous and that i truly do want all the facts and nothing but the facts.

    I would love to be proven wrong – to be shown that all my worries and suspicions are for naught and that there is not corporate deviance at play with CIs – but the Cochlear Americas Dept of Justice fine via the whistle blower indicates otherwise (see link in the blog entry above)

    also of note – i have long avoided delving in CIs because i feared what i would find – i have turned a blind eye on this issue for a long time for fear i would hurt the parents or the good folks i know who have CIs – it is nearly impossible for folks with CIs not to take the issue personally as it is nearly impossible for many folks within the Deaf community who opposed them not to

    but still i will try to get the facts and see the true truths and just seek to ensure they are safe or that folks have the FULL info before making decisions etc.

    diane sorry to go long here but i do want folks to understand us

    happy thanksgiving diane to u and urs

    peace

    patti

  6. handeyes
    Nov 24, 2010 @ 22:45:11

    Don – not sure if u r saying candy HAS a ci – dont think she does yet as per an earlier thread here re: CIs (im not outing any info she has not already made public herself) but regardless ur point remains – all of us should care about this topic – those with and without, those for and those against

    we should seek the facts and the data etc

    i do truly hope that ALL of us will seek to make the invisible visible re: the CI issue

    this is why i do like to talk folks who r happy with their CIs – it is a fact for some they do benefit to varying degrees and they experienced no complications from it etc

    for others who have experienced otherwise they must be allowed to share their truths too

    lay all the facts on the table – if they are by and large fine, dandy, safe, ethical, no corruption behind the scenes, all altruistic from circuit board to installation to mapping to AVT – then that should be made self-evident – if there are problems they should be brought forth for all to see and then they can make an informed choice

    folks should also know that i have opposed folks sensationalizing the issue, i have opposed folks characterizing folks with CIs as robots (i do know some folks who have CIs call themselves cyber borgs and all that but that is their choice and their right – it is not right for others to call them names – id prefer they didnt as it confuses and leads to abuses but…) folks should know that i do not call parents who choose CIs audists – i understand why they make those choices and i respect their choices – i just want answers for everybody

    folks should know that i know folks can love their CIs but still complain about how they dont always work right or how expensive the accessories are or how labor-some and demeaning the AVT is etc

    folks should know that i know that some folks bash and mock folks with CIs and there is a lot of Nazi rhetoric thrown around beyond the eugenics paradigm (the eugenics / social darwinism paradigm does have some applications here but folks stretch things, sensationalize things, make hyperbole, circulate myths, and rumors, and falsehoods, and pix that re not truthful – as if we were the extreme right trying to paint Obama as a muslim extremist)

    folks should know that i know that sometimes when folks get a wee measure of privilege (ie hearing or speaking) they lord it over others and that aint cool

    folks should know that i KNOW how confusing and misleading being partially deaf (neither / nor) can be

    folks should know – im aiming for a place and a space where we all can be…

    loved (with a FULL Deaf Center or without, with a CI or two or without, with ASL or without, with speaking abilities or without etc)

    yep i be aiming for the sun folks

    wanna jump?

    geez i just wrote blog entry didnt i

    dang!

    happy thanksgiving Don to u and urs

    peace

    p

  7. Candy
    Nov 24, 2010 @ 23:28:48

    Of course DonG, every company is out to make profits so why bother to make a big deal about cochlear companies out to make a profit. As for the Unreported cases, what makes you think it’s out there? Care to explain? injuries? care to point that out to me? Deaths? care to point that out to me as well? I have no problem if it is presented as facts with references to such. If anyone can’t point to any thing that shows injury and deaths, then these are nothing but wild assumptions based on bias. Malfunctions are common with anything man made. If AB had not made a recall because 2 out of 28K had problems with it, then it would indicate they didn’t care about the recipients of these models. But as it is, they did do a recall voluntarily, ergo they CARE about their customers. And, no, I do not have CI.

    Patti..

    There was no bashing of any moms on my blogs. They were hard questions. The questions brought up which pointed to things that were well known and nothing new. So, it’s not bashing, in my book.

  8. Candy
    Nov 24, 2010 @ 23:31:24

    And, Patti..

    As to some of your questions, I’ll have to check to see if they’re facts before I can answer. All in good time.

    As for the outrageous prices. I can say the same about everything we have to pay for on a daily basis. Pretty much everything. It’s not just CI and HAs

  9. handeyes
    Nov 24, 2010 @ 23:38:27

    Candy

    re: your book – yep i think we perhaps read different lit. – i am hoping some day though we might be reading compatible books – i doubt we will ever be on the same page but at least be able to see some common ground – that is me aim.

    re: the deaths – they have been documented and the figures were hard and slow to come by – they were largely a result of the surgery and post-surgery complications – many due to meningitis settling in as a result of the surgery – heart breaking to think of parents who went with CIs because their Hearing baby had become Deaf as a result of meningitis only to have them perish as a result of the re-visited illness brought on by the surgery

    now they give the shot so that problem i am sure and thankful is drastically reduced

    facial paralysis is still a risk and other types of infections as far as i understand

    will look for the figures that i saw several years ago or any new ones but they are oddly hard to come by

    re: everything being expensive – well again we may be reading from a different book – these things cost more than a couple of nice cars and they work far less reliably

    there is also the odd thing that CIs are often covered by insurance co. where as digital hearing aids are not? i know of several folks who felt they had no choice but to get CIs because they could not afford high end digital hearing aids

    re: the Deaf mom – in my book it was definitely uncalled for accusations dressed up as questions but i will AGREE to disagree on that

    re: the witch hunt – wasnt cool when it was directed at u and its not cool when its directed at her

    peace

    patti

  10. Candy
    Nov 25, 2010 @ 00:18:58

    I asked the surgeon about facial paralysis and he said it is rare. He told me that they know what to avoid. So, my thinking is that before surgery as with any surgery, always ask questions. Do check out the link, you might find it interesting. This is what I’m talking about, provide links or references or cite something so I know these are facts, not some hot air.

    http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfRES/res.cfm

    “Posterior tympanotomy is commonly performed through the facial recess to facilitate cochlear implantation. A rare but serious complication of this procedure is paralysis of the facial nerve and/or the chorda tympani. These complications generally occur because of a limited understanding of the anatomy of the facial recess.”

    note, rare but serious complication.

    Not like what it used to be.

    Personally, I’ve done my research and have concluded that if I were to go for a CI, I definitely will avoid AB although their features are cool. I think Cochlear has better track record.

  11. Candy
    Nov 25, 2010 @ 00:19:56

  12. handeyes
    Nov 25, 2010 @ 00:57:54

    candy

    plenty of links up in the blog entry which is about the recall and the other lawsuits

    but if and when i find those others sources re: complications etc i will provide them

    right now – family here ya hoo and i have pumpkin cheesecake to make – it rocks

    thanks for the link – and yes i do know it is less common than in the past. they did learn from past harms. very unfortunate for the folks who suffer from the learning curve

    i care about them too

    and also diane said re; deaths – 1 is too many

    re: ur research and ur conclusion – i am definitely glad u have done all ur homework and are satisfied with it – Cochlear Americas whack on the hand of $880,000 by the us dept of ed dont bother u and that is fine and ur right

    me just want folks to have all the info

    off to bake and hug

    happy t day all

    peace

    p

  13. Don G.
    Nov 25, 2010 @ 01:36:13

    Speaking of hip replacements, I just saw an advertisement by a lawyer that named a specific company brand and said if you need a second surgery and are experiencing certain symptoms, then you might be qualified for compensation.

    Sometimes companies have to be FORCED to acknowledge they made a faulty product, AND fix the problem, or compensate the victims, at the COMPANIES’ cost.

    CI companies are NOT above this, just because they’re “doing it for the poor little Deaf children”. this is disingenuous — the companies are only in it for the profits.

  14. Don G.
    Nov 25, 2010 @ 04:42:38

    Gina —

    I really have to wonder…. when you’re saying something, it’s “hard questions”, but when we say something to you, it’s “attacking”. Sure looks like that’s how you see it.

    I showed a willingness to re-evaluate myself and what I’ve said, and try to move forward. I note not one of you have commented on that. You and your “friends” like to say Deafhood divides/has divided our community. Yet, I, Patti, and others have been trying to forge bridges and connections. Perhaps it’s not Deafhood that is doing the dividing, but those who don’t understand about Deafhood who are not willing to create ties and cooperation among our community, and instead are the true dividers?

    How about you re-evaluate yourself and see how your words and actions have affected us and our community and make a gesture of your own to try to forge a bridge and connection?

    Yes, I’m asking a “hard question” here.

  15. Candy
    Nov 25, 2010 @ 15:37:51

    Before I go on, Happy Thanksgiving!

    Don, your questions are not attacking.

    I have and I still don’t think I did anything wrong except to blog. I blogged and people contact my employer and harass me when I express my opinions. It helps when there’s someone neutral, one that never goes to any of these deaf sites to see the truth. So, yeah, I have asked several people.

    I guess my blogging about the truth pisses some people off.

    And, as for “friends”. Let me tell you something. You guys have email groups to plot. We don’t. We’re just acquaintances. We don’t get together, you guys do.

    And, I will attack ideas by an organization. That’s not attacking a person.

    If it is laughing at Mike’s and your bantering over the monopoly money, well, I think we already covered that.

    I can and I will blog about the people behind the organization if I have credible evidence. If that takes using a person’s statement, that wouldn’t be attacking a person either. It would depend on the context. So, I really don’t know what you mean unless you spit it out.

    Happy Thanksgiving

  16. Don G.
    Nov 25, 2010 @ 17:42:21

    Ahhh….. truth. As someone once said, long ago, “what is truth?”

    Is it truth to uncritically state “facts” put out by the media, just because it’s in the media and is mainstream thought?

    Is it truth to deny history and experience, just because you might find it unpleasant to accept?

    Is it truth to put down the values, beliefs and norms of an entire culture, just because they don’t fit with the values, beliefs and norms of a mainstream, dominant culture?

    Is it truth to accuse a group of “plotting”, when they were discussing how to counter lies and misinformation?

    As for the rest, it seems like you still just don’t “get it”. It’s bad enough to be blind to others, but it’s horrible to be blind to one’s self.

  17. Candy
    Nov 25, 2010 @ 18:56:13

    DonG..

    If you know how I blog, surely by now, you’ know I do look at all sides.

    I know the truth about that group. Nothing you say will change it. Integrity of that group? hmm I think I will leave that up to everyone to decide for themselves.

    It’s funny how I keep hearing new things all the time, like now – “they were discussing how to counter lies and misinformation.” Smooth.

    Well hey, it is Thanksgiving, let’s just focus on what we all are thankful for. Okay?

  18. RLM
    Nov 26, 2010 @ 12:44:21

    Candy,

    Mike McConnell surely pulled the wool over our eyes including Don G with his vlog thru Monopoly money props. He never put the disclaimer at the end of that vlog anyway.

    This are a classic example of CI companies out to deceive and trick the emotionally vulnerable
    parents of deaf infants and youngsters on daily basis like Mike McConnell and his tricksters,

    Any medical devices ought to be done by government, not companies to avoid any conflict of interest among profit makers.

    Many of us know that we never will replace the human heart with heart implant. Technology have its limit. Nobody replace the Creator or the mystery force hold our universe together.

    RLM

  19. handeyes
    Nov 26, 2010 @ 14:30:29

    heye all

    hope u had a thankful thanksgiving

    id like to suggest folks dont be dragging in other stuff here that does not relate to the topic

    i didnt follow the monopoly $ stuff

    and i think don g and candy r moving closer to a common understanding

    there are truths that r fact based and there are truths that are sentiment / perspective / moral based

    one is more subjective than the other and sometimes facts get buried to conjure up truths that r not real

    regardless these r some things that i know to be true based on the facts i have seen:
    1. some folks can hear more with CIs
    2. some folks experience complications or no benefits from CIs
    3. CIs are very controversial due to the VALUE CONFLICTS behind them
    4. some folks are anti-CIs no matter what
    5. some folks are pro-CIs no matter what
    6. there is a HUGE profit margin re: CIs manufacturing and marketing
    7. often with profit comes greed comes corruption

    it is something worth examining but sensationalizing and misrepresenting on either end of the extremist rainbow rhetoric results only in more mudslinging and moves us further from common ground and true truths

    id like to suggest that folks (meaning all of us and not just folks who have opposing viewpoints but we / ye ourselves too) examine just how loyal we r to our old grudges and how that ole baggage may be slowing us down – may be weighing us down – may be blind siding us – may be broadening our blindspots instead of broadening our horizons

    i have NO interest in the hatfield and mc coy feud at people of the eye

    me eyes be on the prize folks – equality and justice for all

    lighten the load – forgive and move forward

    what others do with their ole wounds is their business – what we do with ours determines our future

    as a survivor always told my students “hatred is simply a waste of time”

    shall we stop wasting our time????

    if a survivor can forgive and release the tentacles of hate from her heart can we not move forward?

    if mandela can say – i will not carry any bitterness or hatred in my heart as i move out of this prison for if i do carry it outward with me – i remain in prison then can not we lighten up about past wrongs

    can we not forgive ourselves for what we have done or failed to do and forgive others for what they have done or failed to do???

    “love does not rejoice in wrongdoing, but rejoices in the truth.”

    the truth is advanced bionics has recalled its HIRes 90K and many folks are faced with decisions of what to do – do

    the truth is sovona is unsure of how the purchase of Advance Bionics (expanding is market from hearing aid devices into CIs because they expected a huge jump in that market) was a wise thing given that the company they selected has had such faulty products

    the truth is many folks have suffered in the process of trying to undue being Deaf

    the truth is many folks have experienced advantage in the process of trying to undue being Deaf

    the truth is many parents need our love and support – not our rhetoric

    the truth is there is not enough materials and resources out there for the parents to allow them to make good choices

    the truth is extremists on either end of the rainbow often are compelled by a wee bit of hate and that is not great at all

    lets be extremists for love folks

    peace

    patti

  20. RLM
    Nov 26, 2010 @ 16:25:25

    Patti,

    With due respect, I am just trying to point out the examples of deceptive marketings within the CI companies as what Candy reminded Don G’s gullibility of Mike McConnell’s “Monopoly money props”
    last spring 2010.

    I also was being deceived by Mike McConnell’s vlog of what he already done like donating $$ to the anti-Deafhood, too. Don G simply raised the question how come McConnell did not donate any $$ to enrich the deaf communities. McConnell replied in mockery of Don G’s feeble-minded guillibity. Don G, me and others were also fooled by McConnell.

    In reality, Mike McConnell did not enclose anything that was just a satire in his vlog/blog.

    Mike McConnell and his followers kept emphasizing on the aspect of real choices among parents of deaf children to correct the defective flaws of those children’s inability to hear, etc.

    Did Mike McConnell, Candy and others point out the questions of ethics and dishonesty of CI companies regarding the malfunctioned products? They never did!!!

    That is not about the ‘see and saw” approach or the Hatfields and McCoys antics. I once planned to direct the “Hatfields and McCoys” school play at the WV School for the Deaf with the use of play wrote by Billy Wheeler. I had an extensive knowledge of the historical facts behind the Hatfields and McCoys senseless feud spilled into the state and federal involvements.

    I just gently remind Candy that Don G did not wrongly believe McConnell. Don G really know his own stuff, not a real fool. I trust Don G more than Candy and other deaf naysayers because he do admit his own mistakes and personal flaws than the spinmakers, ex.. Candy. That is very admirable human trait of anyone to acknowledge his own flaws or mistakes like Don G.

    RLM

  21. RLM
    Nov 26, 2010 @ 16:31:02

    Patti, I am sticking to the topic within this forum.

    Here is Mike McConnell’s vlog which is not the original posting of what McConnell deceived the deaf community. He justified of doing it with glee, etc.

    http://kokonutpundits.blogspot.com/2010/09/my-plan-is-working-flawlessly-rubs.html

  22. RLM
    Nov 26, 2010 @ 16:40:50

    Candy and McConnell are quite obsessed with Don G’s guillibility over the Monopoly money over months.
    http://kokonutpundits.blogspot.com/2010/06/critical-analysis.html

    More vlogs and blogs repeatedly hinged on Don G’s guillibities by Mike McConnell and Candy.

    The deaf naysayers are the fine example of the CI companies and medical community defy the human ethics of implanting the devices into deaf children without the consent of youngsters themselves.

    Dr. Harlan Lane already warned, warned, warned the deaf community about the issue of ethics when come to the CI as we ought to seize that kind of issue to confront the CI, especially the ethically bankrupt CI companies and medical community comes to the malfunctioned products.

    Guess what? One editorial in 1990s Gallaudet Buff and Blue article blasted Dr. Lane who the f*#k thinks by telling the deaf people how to approach and fight against the CIs on the issue of human ethics. Lane was simply urging the deaf people to wake up and smell the coffee!

    Dr. Harlan Lane is really very warm and sincere person which I have a great respect for him in many ways.

    RLM

  23. mcconnell
    Nov 26, 2010 @ 19:49:37

    Lighten up, RLM. Hyperbole isn’t to be taken seriously around here. But thanks for the links. If you had clicked on a link in my blog about the “donation” thing you would’ve understood completely I was talking about monopoly money and not real money. Ah well…. As for donating, it’s a personal decision. I donate to whoever I feel is deserving in getting the money. No need for me to tell everybody on who I donated my money to.

    Patti raised an important point. If a CI has a recall on it, who bears the responsibility and cost on removing it if it’s already implanted?

  24. Dianrez
    Nov 26, 2010 @ 20:36:51

    The real point of this recall mess is not who bears the cost of removing and replacing implants…it is the personal cost to the child or the adult who has already gone through the experience of evaluations, preparation, anxiety, and surgery, pain and rehabilitation only to have to go through it again. If at all. With no guarantee that next time it will be better or safer. Some have had CI’s replaced two or three times.

    Surgery is a physical and biological assault on the body each time with a recovery period that can last for several weeks or months. I have wondered how the CI industries view this particular point…what value does the QC person place on each failure? “Oh, well, one can’t satisfy them all?” Or is it more like “Oh, well, if we pay $1.8 million each for 300 failures, we still get to keep the $6 billion in profit.”?

    We must hold the CI industries to account for every single failure, as even ONE is not acceptable in terms of human losses. This is not a problem of hearing aids arriving dead in the box and simply exchanged for another one off the assembly line.

  25. Candy
    Nov 26, 2010 @ 21:58:13

    RLM..

    Are you sure you want the Government to control these things? You might want to re-consider that thinking of yours.

    You said:

    ” CI companies out to deceive and trick the emotionally vulnerable parents of deaf infants and youngsters”

    Care to elaborate on that, specifically? You said that “this is an example of..” The company voluntarily recalled and notified their customers, how is that deceiving or tricking?

    What does 2 out of 28K malfunctioning device have anything to do with ethics? Anything man-made is subject to malfunctions. It’s a risk one has to take when weighting the pros and cons of getting a CI. There are more than one CI company, consumers have more than one product to consider. It’s like Maytag, Whirlpool, Kenmore washers/dryers. Maytag used to be real good, they’re not anymore because Kenmore bought out Maytag and their reliability sucks. Some companies have better track record than others. It is just a matter of doing your own research to choose the one you feel confident with.

    Personally, I would think with any recall, the cost should be absorbed by the company and product/device replaced free of charge. We’re only taking about two individuals here, anyone else with the same model do not need to have their CI re-implanted or I think the proper term is explanted. If their CI is working fine, then they do not need to do anything. It’s not like every HiRes 90 CI is malfunctioned, just two so far. And, the symptoms apprears 8-10 days after activation, I believe. Maybe they’re just lemons. Lemons happens, ya know.

  26. RLM
    Nov 26, 2010 @ 22:55:14

    Candy and Mikey, I know that would be not possibly happened in the quasi-captialistic America for the government to possess the control of invasive medical devices when come to the implanted stuff, ex. CI.

    Many deaf young adults want their CI devices to be removed, but the
    health insurance refuse to pay for the removal. That is definitely wrong! If the device put someone’s health at risk.

    The Medicaid program and private health insruance refuse to pay for the CI removal. Why?????????????????

    That is not really much about the real option / choice at all. The taxpayer subsidization of forced CI surgery upon deaf infant or youngster without their consent are equaled to the government’s social engineering of deaf kids and societial brandings on kids like cattle identification.

    RLM

  27. RLM
    Nov 26, 2010 @ 22:56:43

    Ralph Nader is one of my personal hero, who have been very gusty to go over the Big Three automakers on the issue of auto safety.

    We need the Deaf Ralph Nader within our deaf community to confront the safety issue of CI devices, etc.

    RLM

  28. Dianrez
    Nov 27, 2010 @ 00:57:23

    I started wondering how available numbers were about the CI.

    A quick scan of what was available on the internet shows great variability…one source says 188 thousand implants worldwide, another source says 800 million. One source says they cost $30 to $50 thousand each, another source says $60 to 100 thousand.

    The Nucleus 5 corporate website says that each CI represents $7,382 net profit after taxes to the company.

    Suppose we take the lower number, 188 thousand, that yields a net profit of $1,387,816,000, or 1.38 billion dollars for the industry.

    Sonova, the recalling industry, projected a market growth at the rate of 200,000 per year of new deaf customers and a double digit growth in business last summer.

    Advanced Bionics reported selling 1,000 implants in two weeks, or a total of 90,000 implants in five years.

    Nucleus 5 reported 21,025 of its devices were implanted with a .71% rate of facial paralysis, or 149 persons affected with paralysis.

    National Institutes of Health reported the 188,000 worldwide implants with 41,500 adults and 25,000 children in the USA. Following this, we would expect 294 adults and 177 children affected with facial paralysis.

    Those are all approximate numbers. We still do not have an accurate breakdown of real numbers of implants, with real numbers of the different types of failures, listed as:

    –wound-healing problems: skin breakdown over the implanted device, wound infection, CI working itself out.
    –damage to the facial nerve
    –leakage of cerebrospinal fluid
    –infection of the cerebrospinal fluid (meningitis)
    –dizziness (vertigo), headache
    –failure of the device to work, needing replacment

    Keep on asking questions. Demand numbers. Demand perfection.

    Simply put, if YOUR child has complications or YOU experience permanent facial paralysis, that is one too many.

  29. Jean Boutcher
    Nov 27, 2010 @ 02:46:52

    Diane,

    Not to mention the spread of spinal mennigitis which occurred in Belgium several years ago.

  30. Joseph Pietro Riolo
    Nov 27, 2010 @ 14:08:26

    I want to make a comment on the points raised by Dianrez (please do understand that I am not picking on her; her points could be said by anyone). I would counter the points with the following:

    1. Every year, a small number of women died from induced abortions. Is one too many?

    2. Every year, a small number of babies died from vaccinations. Is one too many?

    3. Every year, a number of people died from surgeries. Is one too many?

    4. Every year, a very small number of people died from the failure of pacemaker. Is one too many?

    Just because a person died does not mean that the medical technologies should come to halt. People have very various tolerance levels for risks that come with any medical technology. A person may feel that the benefits of a medical technology outweigh the risks associated with the technology. But, the next person may feel that the risks of the same technology outweigh the benefits. This is still true even if both persons are given exactly same information. The difference in tolerance levels is due to their different value systems and life experience.

    As any engineer or researcher could tell, it is impossible to expect perfection in any technology. The properly trained engineers and researchers will always consider all risks no matter how remote they are. They will assign a probability to each risk and the stakeholders will have to evaluate the risks and decide whether to proceed with a technology or product. They will look for ways to minimize, manage or, if possible, eliminate the risks. They will not just stop technology or product just because there exists any risk. All through the history, pioneers fully knew the risks and decided to accept them rather than staying in crib where they would be safe at all the times.

    I am all for more and more and more information about cochlear implant and any medical technologies and all technologies. But, what I really object to is that few people use or misuse the information to further their personal agendas or biases. An example is that I have seen few people using the complications of cochlear implant as the sole reason to halt cochlear implant.

    A brief comment on the price of cochlear implant: If a company holds a patent on a product, the price of the product is almost always high enough as long as it does not destroy or diminish the demand. It is a simple law of demand and supply. The pharmaceutical companies know this. Making an outcry about the greed in the cochlear implant manufacturers will not make any difference. They are able to sell cochlear implants at high price precisely because there is high demand for cochlear implant.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  31. Dianrez
    Nov 27, 2010 @ 14:30:33

    “But, what I really object to is that few people use or misuse the information to further their personal agendas or biases.”

    There is an insult hidden in that statement, and the insult is aimed at the people who question the neccessity of certain surgical procedures.

    What is not touched upon is the reverse of that statement: that I really object to people hiding statistics or fudging numbers in order to make any procedure look less risky or more beneficial than it may actually be.

  32. handeyes
    Nov 27, 2010 @ 15:12:45

    heye all

    Candy – u might want to check out the link in the blog to the first suit against Advanced Bionics that was done at the request of the FDA – HiRes 90K plus some of Advanced Bionics other CIs are causing a variety of problems – not as severe as the recent 8-10 days out recall ones but other problems that warrant a $1.1 million dollar fine and also the CEO was fined $75,000

    re: govt – i dont want the govt manufacturing and distributing CIs – i do want the FDA to set up an impartial and independent investigation into CI safety (see petition – pls read it folks it is just and fair and similiar to other petitions when some things have brought about ill-effects – ie the use of medicine with adolescents that actually caused psychosomatic effects and resulted in some suicides)

    RLM – i really appreciated what Ralph Nader did re: ford pinto – very important
    less pleased with what he did in splitting the vote when he ran for president but his challenging of corporate deviance has been real important

    re: corporations and greed – one only needs to look at the tobacco industry and their cover up of the nicotine carcinogens etc

    Dianrez – THANK YOU very much for gathering all that info and bringing it in here to share

    FACTS are important and lack of facts are important

    thank u

    Joseph – i would agree that folks sensationalizing and distorting is not cool. It is very clear that that is not what Dianrez is doing

    re: the “shit happens” attitude with deaths for technology – oh gosh im really sorry but i have a problem with that. i do cuz some of them were babies and had no choice as to if this was what they wanted. with the other cases u mentioned – it was adults choosing those technologies

    in medical ethics normally what we see are:
    – if it is life threatening and the treatment / cure carries life threatening risks at a very minimal or low low low level then folks will go with the risks

    and this is what it may boil down to – for some folks – leaving a child Deaf is like giving them a death sentence – truly in some folks mind this is how it is. it is a hyperbole that they have used – in those screening rooms when playing back the tape of “this is what ur baby can hear” “this is what ur baby will be able to hear with CIs”

    dead ears or hearing ears? yes there are some risks but they r wee – we have worked out all the kinks on some past subjects (some old folks who have expired from the complications and some wee babes mostly but we have got things pretty much figured out – yes yes there are always risks with surgery but what is the alternative??? leave the child DEAF???? so they can read at a 4th grade level – choice is urs mom and dad….)

    so i have seen the flaunting and taunting of statistics on both ends of the extremist rhetoric rainbow – not cool not cool

    now i will say something from my heart

    1. i get might distraught to see folks say “oh mine ci can come out easily so i can do the MRI”

    im happy for u – i truly am but what about me pal who got hers 15 years ago and its still there despite having broken 5 years out – she cant get hers easily removed to have an MRI done to help them understand her severe head aches and vertigo (which may or may not be correlative / causal / or coincidental to the CI)

    2. i have the other model – phew

    im happy for u – i truly am and i hope and pray no complications come up 10 years down the road with ur model but what about the parents who went with Advanced Bionics only to have a different lemon implanted 4 times

    has happened folks – i aint making this stuff up

    3. facial paralysis is very rare

    im really happy that it is rare but it does happen and for the person who has experienced it and will live with it for the rest of their life – there is very little consolation that it is such a rarity

    soooooooo

    i think we should ALL want answers – all of us

    i dont want answers so i can scream they are evil incarnate – i dont believe that they are

    i want answers sooooo we have the TRUE BIG PICTURE

    re: their costs – joseph – pls check out the dept of justice fine against Cochlear Americas corp. in my blog up above – it helps shed some light on how co. can over price their product and still have folks cover the cost

    especially when they get the govt and mandate insurance companies to foot the bill

    and now to answer some of ur questions joseph:

    1. Every year, a small number of women died from induced abortions. Is one too many?

    The women choose this risk

    the infants and children did not choose the CIs – consent???

    2. Every year, a small number of babies died from vaccinations. Is one too many?

    usually mandatory vaccinations are only given for life threatening illnesses – the rest are optional and up to the parents discretion

    many parents dont choose vaccinations that are optional because the wee risks still outweigh the wee risks of child developing complications from say chicken pox – some parents dont want the inconvenience of the chicken pox and opt with the vaccination while crossing their fingers their child has no reaction

    3. Every year, a number of people died from surgeries. Is one too many?

    Yes – if its ur dad, brother, sister, mom, child, etc – yep its one to many but they accepted that risk – usually only because it was a MEDICAL NECESSITY and not an optional thing

    4. Every year, a very small number of people died from the failure of pacemaker. Is one too many?

    with the pacemaker – since its a life threatening kinda thing – folks can rationalize it a bit more easily

    now again for clarity sake – ill repeat what i have said numerous times here already – i am not calling for a ban on cochlear implants although i know plenty of people who want to call for a ban on CIs

    i have seen some suspicious stuff between CI corporations and/or surgeons and foundations that seem less than ethical

    i have been REALLY concerned about AG Bell Assoc having two major CI companies that have been fined for unethical dealings or faulty products as part of the Circle Alliance Founding Partnership

    I have been really concerned that AG BEll’s CEO – Alexander Graham told me he had no knowledge of the past suits and fines

    i have many friends who have CIs and are generally happy with them – they have some complaints but by and large its more of disappointment than any problems and that to me is a big relief

    i have several friends who have CIs that r no longer working and the device remain in their heads because to remove them its to costly or complex

    i have many questions and want answers

    hence the call for an indep and impartial investigation

    if everything comes back saying its fine and dandy – GREAT

    if stuff come back saying hmmmmmm not kosher, not right, not just or good – then we say fix it – fix it

    do the right thing

    do right by all the folks from A to Z as best we can

    cuz its the right and just and good thing to do

    peace

    patti

  33. RLM
    Nov 27, 2010 @ 15:15:23

    Let me question who Joseph Pietro Riolo really is. He seems sound more like the AGBad member. I never seen what he really look like.

    Why the defenders of CIs and audism tend to hide their faces unlike the ASL supporters and opponents of audism??

    Candy and Joseph are the fine examples of “hiding their faces”.

    Is Joesph really a deaf person like us or pretend to be? His writing indicate that he really is a hearing person in many ways.

    Deaf people and I could tell by how people express their emotions and thoughts thru the TTY conversation. I still have the instincts of reading people’s writings.

    I could tell what kind of person Dianrez and Don G from their writings. Same thing with Patti. They are all decent and sincere people.

    RLM

  34. RLM
    Nov 27, 2010 @ 15:18:06

    Here is Joseph Pietro Rileo’s Facebook profile- still no pics

    http://www.facebook.com/people/Joseph-Pietro-Riolo/100000371553171

  35. Joseph Pietro Riolo
    Nov 27, 2010 @ 17:14:45

    I certainly welcome questioning cochlear implant or any technology. It is just that few people have used the information to create selective arguments to support their position to ban the technology of cochlear implant.

    I also agree that few, some or even many people have used the information to glamorize the technology of cochlear implant. This is equally unacceptable and sometimes unethical, at least for me. No information – good and bad – should be withheld.

    The question whether cochlear implant is a necessity is up to each individual or parent in case of a deaf child. Some think that the question does matter and needs to be answered thoroughly. But, others think that the question does not really matter. What is a necessity for a person may not be a necessity for the next person or does not really matter to the other person. For me personally, cochlear implant is not a necessity. But, I would not argue that it is also not a necessity for all other people because I recognize that my value system and my life experience are different from their value systems and life experiences.

    I do appreciate that people try to shine light on unethical or questionable practices that these companies did. But, few of them did not stop at that point and decided to continue arguing for complete or partial ban on the technology of cochlear implant.

    I will repeat my point that I made previously. Not everyone evaluate benefits and risks in same way. Some feel that the benefits of cochlear implant outweigh the risks. Some feel the other way. The argument of whether one is too many or whether it is a necessity fails to realize this which is my main point.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  36. mcconnell
    Nov 27, 2010 @ 18:10:53

    RLM has attempted to “out” JPR in the last two recent posts of his (at 3:15 PM and 3:18 PM, Nov 27) just because of his opinions and comments. Why the continual need to out people who are anonymous just because he or she has an opinion or comment not popular to other people’s taste? JPR has not attacked anyone. He makes his own comments using the word “I” repeatedly to make his opinions known. The very reason for anonymity is because of the viciousness we see in some of the Deaf community. Interesting that RLM’s comments were approved. Why Patti? Just curious. Does JPR deserve this? Is this what you’re attempting to allude to, Patti? Whether you approve my comment or not doesn’t matter. I’m relaying my observation to readers (or to Patti) as a FYI.

  37. handeyes
    Nov 27, 2010 @ 18:34:37

    Heye all

    Joseph – i really appreciate what u wrote cuz it acknowledges the extremes on either end and neither is good

    the extreme that says – CI are the light of the world and the other that says CI are the evil of the world

    RLM – JPR is a Deaf man with a Deaf adult son – he has not been shy about his identity – hence he always signs off with his full name. the fact that he does not have a picture out and about does not bother me.

    While JPR at times can come off pretty strong, i have often found him very lucid, rationale and at times *gasp* agreeable

    his comments here and there have often helped me see and understand things from his and other folks pov

    i dont see any reason to try to alienate or discredit

    this discussion really does not need to be nor should it be an “us” vs “them”

    mike –

    how comments get approved at People of the Eye basically is – for first timers – i have to say “approve” and then hence forth they auto go up and if i feel they r offensive or cross a line – i will recall them and sometimes ill contact the author and say – can i chop out this or that here cuz u r attacking someone etc or ill edit it out and let them know ive removed that bit and if they got an issue with that to holler etc

    i have done this with stuff that attacked folks i tend to agree with and stuff that has attacked folks i tend to disagree with

    but the comments do end up for a while unmonitored or touched when im out and about

    trusting us as a community to work things out as best we can

    the need to pull a comment or have it be modified has been RARE

    folks r by and large pretty civil

    and just fyi re: what RLM is doing re: JPR – i dont think it is outing since JPR makes himself pretty well known – no anonymity etc but it is an attempt to judge and scold JPR about who he is (or isnt) and not about what JPR is specifically shying here in this thread

    whether or not JPR is a member of AG Bell association (dont know if he is or isnt) – i care not. i have friends who are members and id love to see folks from WITHIN AG Bell Association call for certain improvements just as some of AG Bell’s members objected to the AG Bell Pepsi letter and hope some of them are challenging AG Bell about the AVT guideline #3 that prohibits signing and the Circle Alliance partnership with Cochlear Americas and Advanced Bionics (AG Bell Association did pull the Advanced Bionics banner and link from the top of its website a while back so that is a good thing)

    peace much

    patti

  38. Candy
    Nov 27, 2010 @ 18:53:53

    RLM..

    You are making a BIG deal about the monopoly money…read DonG’s comment to me 11/25 at 4:42 am:

    “How about you re-evaluate yourself and see how your words and actions have affected us and our community and make a gesture of your own to try to forge a bridge and connection? ”

    RLM..this is between DonG and I. NOT YOU. got it? He made a statement that is clear (based on his comment to me on my blog on the same topic not too long ago.)that he is refering to the monopoly money. Let me tell you why, I have challenged him to show me where I have used my words and actions that have affected the deaf community or him, and as in the past, he has always brought up the monopoly money, he says I stood back and did nothing. Which of course is debatable because He and Mikey were having lots of fun bantering each other, one uppiing each other and doing it in a satire – like fashion. So, RLM, stop obsessing!!!!

    And, because you don’t like what I said, nor did you like what Mikey said, you decided to make statements about us that you can’t even back up with. Now, you are doing the same with JPR!!! You don’t like what JPR said, you are making wild assumptions and bitching about not knowing who he is.

    Patti..

    this is EXACTLY what I am talking about. RLM obviously does not agree and that is his right. No problem there. The question is why does he have make statements about a “person” while we are talking about the subject here. Topic or individuals? RLM is focused on Me, Mike, and JPR. He is not focusing on the topic at hand. Same thing with DonG, focusing on ME. STOP focusing on individuals making the statements. Focus on the topic.

  39. Candy
    Nov 27, 2010 @ 19:00:12

    I think JPR made very excellent points.

    We are looking at the topic here, discussing the topic at hand here right? I think for the most part, most of us are doing that. Except a few like RLM…

    It seems that Dianrez is taking things a bit too far…claiming that this is a hidden insult:

    “But, what I really object to is that few people use or misuse the information to further their personal agendas or biases.”

    This is what is happening here on this post and that was what I was alluding to. It’s not an insult. But, because maybe JPR hit it where it hurt – the truth, we’re seeing objections?

    Quite interesting.

    hmmm

  40. Candy
    Nov 27, 2010 @ 19:18:42

    And….

    Patti..

    I think you just did a double standard thingy right here..

    RLM is attempting to “out” JPR by complaining that he don’t know what JPR looks like, thinks JPR is member of AGBell, etc. That is like going on a witch hunt. It is.

    you say first timer, approve. Like first timer on a new post or a first timer in the history of your blog? Ahh, interesting. Really.

    Anyway…

    You said:

    “u might want to check out the link in the blog to the first suit against Advanced Bionics that was done at the request of the FDA – HiRes 90K plus some of Advanced Bionics other CIs are causing a variety of problems – not as severe as the recent 8-10 days out recall ones but other problems that warrant a $1.1 million dollar fine and also the CEO was fined $75,000”

    Do you realize that this is a law firm site? This is common, it’s just as common as those late night, early morning INFOMERCIAL we see that cons people into buying stuffs. That is not a credible information to rely on. You need to provide something better than that. I see many of these sites, they’re money grubbing hungry scum lawyers out looking for big bucks. First off, if there is an actual lawsuit that was won, that would be a credible information… The fines happened in 2008 and exactly why they were fined, could you elaborate on that? You bring this up, you carry the burden of providing more information.

    I do think AB is questionable (my opinion), but that does not mean all CI are. That is my view on that. Just like JPR said above, he makes good points.

  41. RLM
    Nov 27, 2010 @ 19:34:44

    Gina aka Candy,

    I must admit that I am entirely responsible for outing you last summer 2010. I already know your true identity before Ricky Taylor aka Ridor exposed you to his audience.

    I just found out that JPR affilated with the XXXXXX .

    Don’t JPR deserve to mention to the readers and commentators what he really do for a living? Is JPR’s comments reflect his own self-interests, not the commnunity at large?

    I just wonder if JPR is part of the military-industrial complex for dealing with deaf dolphins to be send out to the research labs to experiment on them to be fitted with the latest CI technology.

    JPR is a XXXXXXXXXXXXX along with other XXXXXXXXXX. No questions about him being responsible for the past XXXXXXXX climate.

    Why can’t JPR being very open with his true identity when he post the comments?

    The European Union do not allow any kind of anonymous electronic comments or postings. We need to do that in America, too.

    The readers and commentators do have the right to question and find out whose the vlogger or blogger really are all about.

    I do admire JPR’s comments very much and often question who he is really about.

    RLM

  42. Candy
    Nov 27, 2010 @ 19:51:59

    RLM..

    I dont give a flying F. When I was outted, it was not such a big thing, in fact, I laughed and said “damn! Why did RT use my sophmore picture where I had a bad hangover from partying the night before.” It was when people went so far to contact my employer that really lit my fire. I will do what I need to do ethically and legally to expose these truths and more. People will wish they never lit my fire, mark my words.

    I want you to take a hard look at your comments here. I’m serious.

    Patti brings up the topic here to discuss. I focused on the topic. I did question the biasiness of the context of her post. But nothing personal directed at her.

    Yet, you focused on ME. You got personal.

    JPR focused on the topic.

    You focused on HIM. You got personal.

    You also focused on Mike. And, you got personal again.

    So, you have issues. You are one of the several people that are causing division. It is ok to disagree. But, why did you have to focus on the individuals because you don’t agree with them? There is no need for that. If you can’t see what I am getting at, then you’re not worth my time.

  43. handeyes
    Nov 27, 2010 @ 20:05:06

    wow wee folks

    breathe

    breathe

    breathe

    breath in love breath out love

    RLM – i XXXX ed out some text in ur comment above cuz they are assertions of info as fact when in fact i do not know if they r facts or falsehoods and because JPR should decide if he wants that info revealed not u

    and because u have ur own space to do and say as u please – no muddying up this place pls

    Candy –

    here is a DIFFERENT recall from Advanced Bionics (from 2004) for an earlier cochlear implant – FDA site but standard AB press release
    http://www.fda.gov/Safety/Recalls/ArchiveRecalls/2004/ucm111698.htm

    they also had another recall in 2006

    here is an article (not from the law firm) about the lawsuit and fine against Advanced Bionics
    http://7bends.com/2010/04/14/cochlear-implants-bionic-ear/

    why was Advanced Bionics fined in the 2007 lawsuit – cuz of the faulty product

    the CIs were actually shocking some wearers due to a sealing problems with the internal device – brain fluid meets electricity – not good

    some fda info re: CI menegitis safety
    http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/PatientAlerts/ucm064671.htm

    FDA before during and after surgery
    http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/ImplantsandProsthetics/CochlearImplants/ucm062899.htm

    NOTE: the link for the Cochlear Americas case is from the US Dept of Justice

    the other is from the Wall Street Journal and a BusinessWeek publication

    good stuff

    (see above blog entry for the links)

    ill add the other link re: the Advanced Bionic suit in the body of the blog entry

    re: comment approval – i dont really know how to click where in terms of first time user (i think it is for the whole site or after a long period of time if someone hasnt commented in a while) – im not even sure. i think it is just a default setting that ive gone with and ive also been operating on a good faith mentality but if certain folks insist on keep dragging in old sh#t here i might just go to closed comments hence forth

    im interested in dialogue not diatribes and distractions

    if folks could toss less stones and seek more answers and common ground we might actually have traction

    in the mean time its gonna look like some folks r aiming to “disagree to agree” which is kinda yawn!

    peace

    patti

  44. Dianrez
    Nov 27, 2010 @ 20:08:53

    Talking about people and not issues would be out of order, as is questioning the background or identity of persons. Why one is curious about who a resondent is might belong in a different blog, or why the identity of the person is relevant, also in another blog. HERE we are discussing issues.

    Presenting viewpoints and critical notes on others’ viewpoints are a natural part of blog discourse, but hinting that a person is “misusing information to further agendas” is not a natural part of discourse. Rather, it is a way to discredit the person AND the issue or argument that the person is putting forth.

    Bringing in personalities and implying hidden motives is playing unfair, so is hinting that it “hurts” to take offense when accused of hidden agendas.

    Focusing on issues and facts and the values involved, is discussing issues fairly.

  45. RLM
    Nov 27, 2010 @ 20:10:45

    Patti,

    Here is the fact aboit JPR being affilated with(you censored the info). JPR submitted the personal info all by himself.

    http://www.linkedin.com/pub/joseph-pietro-riolo/1/218/37

  46. handeyes
    Nov 27, 2010 @ 20:16:22

    thanks dianrez

    very much appreciate ur comment cuz u did get slammed up above a bit

    and even i have been slammed a wee bit up above here but we keep our eyes on the prize

    the recent recall and in the process we discover a bit more right? some older recalls and the other lawsuits (on behalf of the FDA and the US dept of justice – not exactly ambulance chasers) and we see the invisible become more visible and we see more gaps and holes and more questions emerge

    Death of 7 year old girl after CI surgery (meningitis related 2007)
    http://www.ketv.com/r/10891548/detail.html

  47. Candy
    Nov 27, 2010 @ 20:18:04

    Thank you Patti..

    I will read up on these links as soon as I can. Will get back to you if I have anything more to say.

  48. RLM
    Nov 27, 2010 @ 20:23:15

    Candy,

    I am not getting any personal with you, Mike and JPR. Why should I do that? All of you are not targeting me personally.

    I just want to unmask people, who keep defending the corporatations and organizations that exploit deaf signers and kids. That turn into my own business to expose individuals whose do the real harm to our deaf kids. That’s who I am.

    That are more like psychological warfare than personal vendettas to pull people out of their hiding caves. I am really good at this stuff. 🙂

    I managed to drag the very dark secret from my deaf mother which concerned me at aqe of 14.

    I must admit that I have a lawyerly instinct which set the goals for the jungular veins (rhetorics) to make people lost their composure or control and reveal their true self.

    I would love to be the courtroom lawyer or prosecutor to chew out the CI companies and AGBell proponents in the legal area and make them pay dearly for being the linguistic and cultural imperialists against our own deaf people.

    I would agrue endlessly until someone is worn out emotionally and mentally. That is my own pendelum (rhetoric) to go down on
    people’s own reputation and head.

    Have a nice weekend, Candy. I just wonder why you have to put comments in defense of the CI companies and clueless/ignorant parents of deaf kids to do the forced CI surgery upon them without their consents.

    JPR is somewhat right about the never-ending agruments about the abortion issue like choices to abortion v. defenseless human fetuses.

    Fetuses and deaf kids have much in common which adults have no
    regards for those fragile creatures with no given right.

    RLM

  49. Candy
    Nov 27, 2010 @ 20:29:10

    RLM..

    There are a lot of things online that should be taken with a grain of salt. You need to confirm what you saw. Anyone can create these information on behalf of anyone else.

    Grain of salt, boy, grain of salt. Get more than one confirmation that backs it up, then you might have what is called the truth.

    CI for deaf dolphins? Geesh. I have been following that story, they do not know what they can do for these dolphins. The scary part is that, now they realized they have been sending these dolphins back into sea, DEAF. These dolphins are doomed. CI for deaf dolphins? Really? lol

    Look down, maybe you’ll find that missing screw.

  50. handeyes
    Nov 27, 2010 @ 20:34:26

    Robert – ill leave ur link up cuz it really is not very informative

    if this is the RED ALERT Flare gun u wanna fire off – i think its more like one of those wooden guns that pop out a “BANG” sign

    U r implying alot of stuff about Joseph and if he was a planted spy working for AG Bell and the CI industry – he would be a very poor one at that and they should ask for their money back

    i will forewarn u that if u come dragging in any more crap – i dont care if it is public info or not to taint someone’s name or motives – im giving it the boot

    yes i am engaging in censorship – u got free speech rights all u want over at ur place. there here be me space to exercise discretion

    i understand u want to defend the defenders

    i know that don g is a good soul as is dianrez as is u, rlm, as is joseph, as is candy, as is mike, etc

    we r wrestling with a HARD subject

    we r wrestling with a complex subject

    we r wrestling with an emotionally riddled subject

    let us now begin to wrestle with the FACTS about CIs – the production there of, the marketing there of, the profit there of, the distributing there of, the results there of, the risks there of, the benefits there of, etc

    that should keep us PLENTY busy

    no talk of monopolies, outings, AB 2072, etc etc

    lets just all pretend we dont have a massive case of ADHD here in the WWW and F O C U S for one bloody minute on the issue on this table

    ok?

    pretty please????

    and no slamming others if and when they express a difference of opinion – FACTS and LOVE are more powerful than put downs and jabs

    believe me

    they are the most powerful thing on the planet

    all the other stuff is just noise and smoke and mirrors

    and it stinks

    love love love…..

    peace

    patti

  51. handeyes
    Nov 27, 2010 @ 20:41:52

    yikes u two

    wow

    im composing me little reply and u two r still going at it unbeknownth to me

    screws and marbles and jabs be flying left and right

    me last attempt – PEACE

    RLM – u want to prove ur skill and manhood – take it elsewhere

    candy – u want to prove ur tenacity and ability to quip and quo pro – take it elsewhere

    lord oh lord

    the thing we r supposed to learn from the dolphins – is how humans are f*&king them up with the sonar noise pollution

    that is what we r supposed to learn – read chief seattle

    peace

    patti

  52. handeyes
    Nov 27, 2010 @ 20:44:00

    anyone desiring to discuss Cochlear Implants safety and facts

    welcome and bless u

    anyone wanting to tear another person down – adios

    peace

    p

  53. finlake
    Nov 27, 2010 @ 21:39:18

    Uh, wait, are you gonna tell me you’re gonna try expose me had I said I endorse the CI industry and wanting a CI?

    That’s unwarranted and a simple persecution because of -MY- belief.

    Had you try that on me, good sir, I don’t think you’ll like the outcome on my part. Here’s the difference between being entitled to an opinion and ramming an opinion on others or should I say harassing and persecution?

    I just got a heads up about this blog, even tho I’m not particularly completely retired from blogsphere. This is based off of the last few comments I saw, and no, I have not read the entire entry as well as comments.

    Anyways, Candy, I hope you didn’t get too full. We all did and got real sleepy. 🙂

    PDurr, see you real soon, eh? 🙂

  54. Joseph Pietro Riolo
    Nov 27, 2010 @ 22:08:32

    To Ms. Diane Gutierrez (aka Dianrez): It is not my intention to insult you personally. The arguments that you made seemed to me that you were advancing your personal bias. I felt lousy for jumping to the wrong conclusion and for not giving you full benefit of doubt. I offer my apology for making a wrong assumption about the intention and goal of your arguments.

    Thank you, Mr. Mike McConnell, Ms. Patti Durr and Candy, for sticking up for me. I revealed a little bit about myself and my family in one of my comments at http://www.deafhooddiscourses.com/?p=176#comment-3492 . In the interest of full disclosure, I am not a member of Alexander Graham Bell Association for the Deaf and Hard of Hearing. Nor did I work for it.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  55. handeyes
    Nov 27, 2010 @ 22:35:17

    heye finlake

    happy belated T-Day

    Joseph – thank u for ur comment and the link

    this is one of the things i do love about u – that u readily apologize. i have seen ya do this before and i really appreciate it. u r a rarity in that respect. And we have disagreed aplenty in the blogsphere but i always felt it was civil.

    re: the link – i enjoyed getting to know a bit more about ur background etc – thank u for providing that

    re: sticking up for ya – de nada and i do apologize that some stuff got whammed at u here in this space.

    i do note that u said “nor did i work for it.” does this mean that u currently “do” – again dont matter no never mind to me if u do or dont or did or wont

    just know that someone somewhere is gonna see that past tense and go hmmmmmm

    now off the point but im a bit puzzled as to why this word press system made ur comment come into my inbox for approval when i already had approved comments from u earlier in this strand – hmmmm. not sure why that happened

    very bizarre

    perhaps there is no rhyme or reason to how this system is working and i have always wrongfully been assuming it was making me approve first timers but not the case today with Joseph – i dont think it has anything to do with his having his email address at the bottom of his sign off cuz he did that earlier too

    ah a mystery

    peace

    patti

  56. Dianrez
    Nov 27, 2010 @ 23:49:05

    Thanks, Joseph, it’s good to know we do have things in common, and I realized our paths have actually crossed several times, now that I’ve seen your background in the link you gave. I admit my bias (CIs aren’t worth the hassle as yet) but try to discuss it neutrally and with a skepticism that asks to be convinced otherwise.

    As long as we all have different standards and vantage points to look at this issue, we will still have different conclusions about the CI.

    Actually, all this may be moot in a few years when the stem cell or DNA treatments become available and if they are proven safer and more effective. In the future, the CI will probably come to be regarded as a primitive and grossly brutal treatment.

    Note: in all the comments thus far no one has brought up the social or psychological aspects of the CI; nor mention of its effects on the Deaf community or culture. This shows we are able to analyze different aspects of the same concept and do it separately from the values we attach to them.

  57. Candy
    Nov 28, 2010 @ 05:15:59

    finlake..

    That’s what it looks like, doesn’t it? JPR sticking to the topic and RLM attempting to unmask him, which by the way IS getting personal. He needs to keep looking for that screw he is missing. Not really full, but am enjoying the left overs. Didn’t get sleepy cuz I was anxious getting ready for my first black friday shopping. I see you got to Rochy in one piece, glad you had a safe trip.

    Patti..

    No problem, I agree all that didn’t belong here and I didn’t start it. 😉 But, your post comments here is a glaring example of why things get out of hand. People should stick to the topic of the discussion which does not include personal jabs at commenters like we have seen here. Unmasking a person is getting personal. Comments about my action without specifying what it is, is getting personal.

  58. Candy
    Nov 28, 2010 @ 05:51:14

    Patti..

    Here’s a link you might find interesting as I did. This is a site you might want to check on before doing posts on CI.

    http://thehearingblog.com/archives/54

  59. handeyes
    Nov 28, 2010 @ 14:16:42

    Candy –

    big thanks for the link

    the original posting in this blog was NEWS items as they were released (nov 23 – we didnt have access to the recall letter to recipients)

    the blogsite is important and definitely has more info than the general public does cuz it has stuff from Sovona’s AB recall letter to FOLKS WHO HAVE HiRes 90K

    really very thankful that this blog is up there and shared this news

    very thankful that u provided the link – ill add it up to the top blog entry as many folks dont read comments. even though the site claims to be unbiased it is definitely pro-CI

    the “failing hot” is very alarming

    the point is valid re: folks using comment threads to drag in ole stuff or out out or discredit other

    aiming for the better angels of our nature

    to all of us -no more digs and wagging fingers pretty please. come from love and we might be able to rock the planet

    re: u and finlake – email or ichat is mighty dandy when u wanna have a personal chitchat.

    peace

    patti

  60. handeyes
    Nov 28, 2010 @ 21:05:22

    candy –

    the link way up in comments u gave re: facial paralysis is really a short write up about studying the bones and surgery to try to reduce the complications with CI surgery it does not offer statistics and facts about actual CI surgery that has resulted in facial paralysis – just fyi

    not sure why u provided that link or if perhaps is is an incorrect one?

    peace

    patti

  61. handeyes
    Nov 28, 2010 @ 21:30:48

    Linda Komesaroff – Surgical Consent: Bioethics and Cochlear Implantation
    Publisher: Gallaudet University Press
    http://gupress.gallaudet.edu/bookpage/SCbookpage.html

    Grodin, Michael A.
    Lane, Harlan L.

    Ethical Issues in Cochlear Implant Surgery: An Exploration into Disease, Disability, and the Best Interests of the Child
    Kennedy Institute of Ethics Journal – Volume 7, Number 3, September 1997, pp. 231-251

    Cochlear Implants in Children: Ethics and Choices – Christiansen and Leigh
    http://books.google.com/books?id=GBAmGL_te7UC&printsec=frontcover&dq=Christiansen+and+Leigh&source=bl&ots=x2ZwI1tOtG&sig=-0EtbelMj-67eXj-dFpD_14HztU&hl=en&ei=CsjyTMidJIGdlge6y5mtCg&sa=X&oi=book_result&ct=result&resnum=1&ved=0CBMQ6AEwAA#v=onepage&q&f=false

  62. handeyes
    Nov 28, 2010 @ 21:54:21

    “FDA first became aware of the possible association between cochlear implants and meningitis in June 2002. As of May 2003, we have learned of 118 cases of cochlear implant recipients worldwide who developed bacterial meningitis (55 cases in the United States and 63 cases in foreign countries). The patients ranged in age from 13 months to 81 years. The majority of U.S. patients were no older than five (5) years of age, while meningitis cases in the non-U.S. patients were distributed equally among children and adults.”

    http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/PublicHealthNotifications/ucm064526.htm

    Re: facial paralysis
    http://www.ncbi.nlm.nih.gov/pubmed/19194876

    NOTE: pls see Dianrez comment up up above where she lists out some facts she has found re: CI

    also note that some folks r now listing language delay as a possible adverse affect of CIs when they are coupled with oral / aural only but the CI fails the child and they end up having a language delay because the program, doctor, and/or parents banned a natural and fully accessible language from being part of the child’s menu.

    NOTE: Dr. Tove Skutnabb-Kangas – a leading scholar and advocate in bio-diversity and language diversity says that CIs in and of themselves do not constitute a crime against humanity but when coupled with programs that actively deprive an infant and/or child of a fully natural and accessible language then human rights and language rights must be examined

    peace

    patti

  63. Candy
    Nov 28, 2010 @ 22:22:54

    Am in a hurry with not much time to do the things I need to do at my end before a work week..

    But the link is to explain the facets of paralysis. I had asked my surgeon about these things, was told that it is rare, he said, if I remembered correctly, that only 3% of patients get facial paralyis. The surgery has gotten way better over the years. Meningitis is something that is almost none existent now due to vaccine. Cerebral fluid leaks is rare, he says. I asked so many questions and came away feeling confident should I go ahead with it one day. Vertigo does not happen often, and I know of one deaf person that got CI due to vertigo, her vertigo ended with the implant. True biz. So, I think we can’t apply one experience to all, just like we can’t assume what will work for one child will work for all.

    Will read all of your links when I find the time. Unfortunately, I am strapped for time. ugh.

    But…will get back to you when I can. I guess I’m trying to point out that facial paralysis does not happen often, it is rare. And, that link proves that. Also when getting links on cites and references, I try to look at the date. What happen ten years ago might not happen often now.

    It helps when we look at all sides and see all the pros and cons to get a better picture. I’m not an expert. But, because I have interest in getting one, I have done a lot of reading so I think I have increased my knowledge over the years without holding any bias when reading these up on these things. I also use my experience in having a particular surgery once where I postponed it for four years because I was afraid to have it. It wasn’t a life or death thing, it was more of a quality of life issue. I saw so many bad things mentioned on the forums, talked to several doctors, talked to many people and finally went ahead and wished I had done it four years prior. So, the message I got was to take everything with a grain of salt. Everyone does not have the same body, we all are different. So, I had NO problems and my quality of life increased BIG time. Some things to think about… 😉

  64. RLM
    Nov 29, 2010 @ 00:52:05

    Many deaf adults often tell me how much regretful they got the CI inside their bodies.

    Why the 74 years old deaf woman got herself the CI in the first place? She is in the wheelchair and immoblized from the CI surgery.

    That deaf lady is Frances Parson, former Gallaudet University Art History professor.

    One of the deaf locals in Fort Lauderdale could not understand the hearing man and struggled to catch what the guy said to him. Guess what? I have no CI or hearing aids or speech therapy.

    I clearly understood the hearing man very easy thru lipreading him. The guy thanked, thanked, thanked me and wondered what the good about the CI.

    Pfft to CI!!!!!!!!!!!!!!!!!

    RLM

  65. Candy
    Nov 29, 2010 @ 01:17:18

    RLM..

    You say Frances Parson has CI? and she is immobilized DUE to CI? if so, can you elaborate on that? I have never heard of anyone being in a wheel chair due to CI. Like how did CI immobilized her? Was there a story on her?

    And, if it was something that was passed on to you, by whom? (no need to name a person..use generalizaton i.e. friend, etc.) and how did that person hear about it? I’d like to know the source of your information, if you don’t mind.

    Thank you.

  66. Dianrez
    Nov 29, 2010 @ 01:50:48

    This story written by Frances Parsons in 2002 shows that she remained active two years after receiving a CI and visited a school in DC for children with CI’s. Her article praises the CI method and criticizes ASL.

    http://lotte-articles.blogspot.com/2002/08/ci-story-by-frances-parsons.html

  67. deafa
    Nov 29, 2010 @ 03:11:09

    There’s plenty of device failures, but it isn’t bad enough to recall every single CI to the point that some surgeries were cancelled. It must be pretty bad for AB to recall over 2 CIs. I think any medical equipments would recall every equipments over one or two equipments if it is pretty bad, otherwise they would just replace it. I’m just glad AB recall right away just to be safe before matters get worst.

  68. Candy
    Nov 29, 2010 @ 03:26:42

    Thank you Diane.

    RLM, why are you trying to portray a different version about Frances Parson? Is Frances currently wheelchair bound? If so, her being in wheelchair has nothing to do with CI. You can’t go around making up stories like that.

    Dianrez..

    Did you really see her putting down ASL? I think she was fascinated by the children doing so well with CI. Thank you for this link, I had not known about it. Must have missed it when it came out.

  69. Candy
    Nov 29, 2010 @ 03:35:08

    Dianrez…

    I’m curious. You said she was active two years after getting CI. You mean, she was not in a wheelchair, correct? What happened after two years? Why is she in a wheelchair, if she is? Where is she now? I realized the article was from 2002. Any more information on Frances is appreciated. Thanks.

  70. Shel
    Nov 29, 2010 @ 03:46:04

    Candy,

    I have to concur with Dianrez.

    Yes, Frances was really putting down ASL.. Note the wording and terms used in the excerpt below:

    “… The younger toddlers and babies are when they are implanted, the better chance they have of learning English, but this theory was suppressed by the ASL Mafia.

    Many deaf teachers use ASL and bilingual communication and drove out many speech therapists and audiologists from schools for the deaf. Hearing teachers were not welcomed unless they accepted and used ASL. ASL linguists have had a most damaging impact on education for the deaf.”

    If the statements aren’t putting down ASL, I don’t know what it is.

    Parsons conveniently forgot about the 130 years worth of oralism which damaged the language and educational development of countless Deaf children worldwide. The suppression of sign language in the name of hear-and-speak ideology (regardless of country) have had a most damaging impact on education for the deaf, indeed!

    Another issue I see is this: the implantation of CI is promoting the idea that monolingualism is the way to go rather than bilingualism. Frances Parsons fiercely advocated the necessity of learning ENGLISH. However, she does NOT advocate for bilingualism… and in fact put down ASL.

    The concerns about CI’s breaking down in people (particularly children who don’t have a choice)’s heads is great (in my opinion). But that is not the only concern I have. TOO MANY professionals connected with the CI advocate monolinguality, that is… spoken English, and the deprivation of a second language (ASL) in the misguided goal to promote hearing and speaking only WITHOUT VISUAL CUES.

    Add the deprivation of language when or if CI DOESN’T WORK in children is QUITE deadly to children’s long term mental health not to mention linguistic acquisition and development if ASL is withheld here.

    We have Parsons who is dazzled by the success stories… but what would she have said had she seen those who have NOT benefitted from the CI?

    THAT IS ANOTHER ISSUE. People are not shown the “weeded out” children who didn’t benefit, for a various reasons, INCLUDING defective CIs. What of those children? What happens to them?

    Stepping off the soapbox and going to bed. Good night.

  71. Candy
    Nov 29, 2010 @ 04:09:36

    Shel..

    Three things here. First off, RLM is spreading false information about Frances Parson. What a shame. And, no one cares – so far. This says a lot about RLM. Secondly…Is RLM attacking Frances because like you, he believes Frances is “dissin” ASL? Thus, this gives him a reason to spread lies about Frances?

    Thirdly…

    I think Frances is speaking the truth. I had no idea the ASL fanatics took over Gallaudet in the 80’s. I was there and didn’t pay attention to deaf politics at the time, too much partying. Twit happens. But, I would say that anyone calling the ASL extremist, ASL mafia or ASL fanatics to be all the same, they all have extreme views about ASL like we are seeing now. I call some people ASL extremist, does that make me look down at ASL? No. Because I use it. I think Parson is telling the truth like it is. Times have changed and she revealed what many people are trying to disregard the truth about CI. The ASL extremist trying to distort the truth. So, for anyone to say I look down at ASL without knowing me, is in for a big surprise. Big ones. No, I don’t see her putting down ASL. I see her telling the truth like it is.

    RLM is spreading false information about Frances Parson being in a wheelchair because of CI. Wow. Shame on him. What do you have to say about that Shel?

  72. Shel
    Nov 29, 2010 @ 04:30:04

    ASL fanatics DID not take over Gallaudet in the ’80s. I wasn’t partying in the mid 80 to late 80’s. In fact, I had my head in history books. I didn’t pay attention to Deaf politics either, except for ’88 when I participated in the DPN movement.

    Even so, I still remember what it was like. If you remember: Not everyone was using ASL. Most of the professors used PSE (including Professor Smits (deaf) in History dept) and/or simcommed. This continued even in the mid 90’s when I visited Gallaudet, despite IKJ’s presidency.

    The status quo was there even though Deaf people (who are strong believers of bilingualism) were starting to have some influence. BUT THEY DID NOT RUN THINGS THERE. If this were the case, why are we not seeing resources being made to support the implementation of ASL curriculum as first language for Deaf children with the express objective of developing ASL by itself… rather than being merely used to buttress English as the only goal?

    As for RLM’s information re: Frances Parsons… I cannot say because I have absolutely NO information as to whether she was put into a wheelchair due to a CI only or due to age. Until you have solid evidence RLM is spreading false information about Parsons, you cannot call him a liar, nor imply such.

    I am not going to even speculate here, and neither should you, Candy.

    SIGH…. We have both digressed from the topic in Patti’s post.

    I suggest we all STOP getting personal here and get back to the topic at hand.

  73. Candy
    Nov 29, 2010 @ 04:39:12

    Well Shel..

    We have RLM saying Francis was in a wheelchair as a result of CI. Then we have Dianrez saying Francis was active two years after getting a CI. You’re right, there’s no proof here yet, but the truth seems to be leaning towards the fact that Francis was not in a wheelchair as a result of CI based on Dianrez’s comment. I will look into that further.

    We have proof here what RLM said above in the comment within this thread. We’ll find out soon enough what the truth is.

    As for the climate at Gallaudet, you’re right many used PSE and many used Sim-Com as well as ASL. It wasn’t a climate where ASL was overridden. Not how I remembered it. Gallaudet was NEVER a university where ASL was only used. Never. We are seeing a movement now as a result of this “Who is Gallaudet” post written by Elena Ruiz. I find all of this interesting. Shouldn’t this be discussed as part of the HISTORY of the deaf, no?

    I don’t know if we both have originally digressed from the topic. It was RLM who kept on digressing, if you haven’t noticed it yet.

  74. Dianrez
    Nov 29, 2010 @ 05:09:11

    I’m sure a second reading will make it clear that Parsons was very, very subjective in her opinion.

    It sounds like RLM erred in thinking any infirmity she now has is due to her CI if she was able to visit the school and view a model class.

    (I use the word “model” deliberately. I have often seen visitors shown advanced students while skipping over slow ones.)

    From what I remember about Frances Parsons, she was from an era before the recognition of ASL as a language. She believed ASL was a corrupted form of English with bad grammar, poor syntax, etc. An interesting fact: she had a Deaf identical twin sister and probably grew up using sign with her. Part of her youth was spent in the tropical islands, so there was plenty of opportunity to read.

    She advocated for English, fingerspelling and signed, and stuck to her position while the campus moved toward study of ASL linguistics and bilingualism.

    She didn’t see eye to eye with the new viewpoint and there were hard feelings. This shows in her 2002 opinion when she blames the “ASL mafia” despite linguists and Gallaudet professors’ research showing the benefits of treating ASL as a language.

    While holding divergent viewpoints can be healthy, the verbiage is not. “Mafia” and “ruining the quality of Deaf education” is hardly the way to reach an understanding. I am sure that the presence of bloggers and professors using excellent English yet coming from ASL backgrounds will tend to refute Parsons’ opinion.

    Shel is correct in pointing out Parsons’ omission of oralism and its negative impact on the majority of Deaf people coming through the first three-quarters of the century. Ask any teacher of the Deaf. Just because we bloggers can sling English around doesn’t mean that everybody else can, too.

    Looking back, I believe that the current crop of Deaf young adults has better command of English than those I grew up with. There are many explanations for this: one being respect for ASL and signed languages gaining momentum this past half century. Other reasons: parents learning sign, captions on TV, less exclusionary methods of oralism, better materials and earlier introduction of academics in school.

    Parsons came at a time when enforced oralism was breaking down and was instrumental in encouraging signed language, but now we have gone beyond her trailblazing and moved on ahead.

  75. RLM
    Nov 29, 2010 @ 05:15:55

    First of all, Frances Parson and I regularly bump into each other in various DC places. We always embrace each other with mutual affection.

    I was very shocked to see Frances Parson being in the wheelchair. She was in the tiptop health shape for many years until the Gallaudet Homecoming 2010 last month ago. Frances was pretty ashamed to acknowledge that her CI implants detoriate her physical being. I knew from her eyes and body language as when I gently asked her what happened to her. Someone interrupted my conversation with Frances. One of the current Gallaudet professor helped her around.

    I hope that I will have Frances to acknowledge her severe physical disability from the CI surgery complications few years later.

  76. RLM
    Nov 29, 2010 @ 05:17:11

    There was the “ASL Now” movement to demand that the Gallaudet University to recognize ASL as a formal lanugage and language policy in the mid-1990s.

  77. Dianrez
    Nov 29, 2010 @ 05:25:28

    Oh, sorry, Patti, we went wayy off topic. Back to the problem of defective CI’s, error rates for the CI industry and deaf people who were unlucky.

    Candy, your doctor said a small number, 3 percent, have facial paralysis. That’s higher than the Nucleus 5 estimate of .71 percent. Out of 188 thousand, that means 5640 people. Not a small number by any means. We have to stop talking in terms of “negligible”, “small number” and “look at the bright side”.

    Also, we have to ask the question: are the industries minimizing numbers? Those are real people who have to cope with real problems while attempting to achieve “a better quality of life” through non-lifesaving surgery. They deserve better than disguised odds offered by a cynical, number-crunching industry.

  78. Candy
    Nov 29, 2010 @ 05:32:26

    RLM..

    You said:

    “Frances was pretty ashamed to acknowledge that her CI implants detoriate her physical being. I knew from her eyes and body language as when I gently asked her what happened to her”

    You definitely erred big time by assuming that. This is a reflection of your deep bias on CI. How do you know she was ashamed? You knew by looking at her body language? Wow. Did she say that? No. you’re assuming, nothing but assuming. I remembered why I don’t like to go to your blog, cuz pretty much everything you had there was assumptions, not facts. You have not proven yourself to be credible with your information thus far.

  79. Jean Boutcher
    Nov 29, 2010 @ 08:15:06

    RLM,Peggy Parsons was cochlearised when she was 72 years old? What year? I had a conversation with her at a hotel near Union Station. She was highly spirited and takative last year (October 2009, to be specific). She was over 80 of age at that time. I also saw her at Gallaudet two years ago. She was standing tall, chatting with peole in the bookstore.

    When was she cochlearisd?

  80. Jean Boutcher
    Nov 29, 2010 @ 08:35:25

    Candy asked Dianrez “Did you really see her putting down ASL?”

    I have known Peggy Parsons since 1970s (we shared the same room at Kendall Hall where she tutored history and where I tutored French). She was excited to leave for The Philippines where she — with the encouragement from the alumni office and several deaf teachers in the English Department — was to spread the philosophy of Total Communication. At that time, TC was widely accepted in the USA in 1980s. She instructed SEE #2 to the Filippinos. Several years later, it was fuly realised that Total Communication was (is) a misnomer. I have not had a chance to ask her if she agrees that TC is a misnomer. However, I know that she and the late Dr. Larry Stewart considered ASL as “bad English”.

  81. handeyes
    Nov 29, 2010 @ 13:18:34

    whooooooo hooooooooo

    ya all been busy

    Robert L Mason – buddy ole pal – cut that crap out!

    seriously – i prefer being barefoot with flowers in me hair but if i gotta strap on my funky flower boots in ur honor – i will do it

    one more dragging of b.s. into this space and u will be properly shunned blocked or whatever thingy i gotta go find and click in the guts of this wordpress to out ya – i will do

    id rather not but u have a dB credibility rating that has flown off the chart me pal sooooooo care to reign in some common sense and common decency

    we r interested in FACTS here and TRUTHS that are FACT based not assumption based not anti-ci radar based not i read my mother and challenged her at 14 space

    all of that can be taken over to ur own place

    the MUCK we r wading into and uncovering here relates to ADVANCED BIONICS

    geez

    grrr

    wow wee

    why cant we FOCUS

    and poor ole francis – give her a bloody break.

    yes i saw her present before and yes i have meet many a students who hailed from schools in the Philippines and South East Asia where the joy of Signed English ran rampant and they aint so pleased about the labor intensive methodology they had to go through just to get access to a word here and there but…. they attest it was better than nothing

    this is pretty much the STATE OF DEAF EDUCATION world wide – recall or no recall

    “it is better than nothing” rules the day

    CIs – i can hear some things – well that is better than nothing

    Oralism – i can speak somethings – well that is better than nothing

    SEE – i can see and say some things – well that is better than nothing

    TC – i can see and say a bunch of stuff in different forms at different times – well that is better than nothing

    sim-com – can speak and hear and say a bit here and there kinda – well that is better than nothing

    ASL-English – i can use two real languages separately – well that is grand and good but…. where r u gonna find that????

    that is another major problem

    there is a stone structure at Gallaudet – near the old student center with a bunch of walls at different heights that never connect – when i first entered the Deaf world and was looking at it – someone remarked – “it should be called “the state of Deaf education” because nothing fits and nothing connects”

    that was 25 years ago

    still true today

    still true today

    sooooo no more exaggerated talk about CIs debilitating and demoralizing folks to the point of making them be wheel chair bound (and i got plenty of friends who use wheel chairs – not for CIs mind u – and they would not appreciate the pitying characterization)

    and for Frances – Candy if u re-read and still dont see what Dianrez and Shel are saying then it is another place we will have to attest that we read from a different book

    as far as the “ASL FANATICS” oh please no girl – spout that extreme rhetoric and ill be getting me boots on for u too

    we could start a whole new thread re: Gallaudet but my take on things as of today 2010 is that what confronts gally is its being a diglossic community of which stokoe’s wrote about and other folks have since dissed cuz they took a too PUREST pov re: diglossia from a linguistic read rather than a socio-linguistic read but ever since that article and other notes here and there from woodward and markowitz etc have crossed me eyes and entered the recesses of me brain i have thought – “there is some merit there, there is some merit there” to this theory / conceptualization / application of the notion of ASL is viewed as a low prestige language and Manually Coded English (and or Spoken English) are high prestige

    hence the conflict at Gallaudet

    a true multilingual-multicultural environment values both languages but as long as English (in its various forms – written, spoken, signed) rule the board rooms, classrooms, conference rooms, and ASL is pretty much regulated to the bedrooms and ASL / Deaf Cultural Studies classrooms only – there is gonna be tension and injustice

    more in me next comment

    i do appreciate all that u all have shared here (except for the bit that i identified as not appreciating cuz it depreciates the discourse and im a stickler for the bloody truth)

    peace

    p

  82. handeyes
    Nov 29, 2010 @ 13:23:57

    now back to the original post:

    Advanced Bionics – i updated the post a bit yesterday as i found some more info about other older recalls and other blog entries re: AB

    what im really really really really puzzled about is why no one is saying “wow, AG Bell Association – dang – that is some might bad company u r keeping company with” and “hey, AG Bell dont u think its time to undue that circle alliance founding partnership with Advanced Bionics” i mean if tiger woods can get cut from his corporate sponsors for stuff in his personal life, why wouldnt AG Bell wanna cut its ties with a company that has repeatedly produced faulty CIs that have zapped infants, kids, and adults

    I am glad that they removed Advanced Bionics from their website banner a while after Advanced Bionics was fined $1.1 million and its CEO $75,000 for its bad CIs but this latest recall – WOW!

    The AG Bell Association Circle Alliance Founding Partnership are Advanced Bionics and Cochlear Americas (both have been slapped with heft fines

    “Advanced Bionics® Corporation’s hearing health advocacy division, the Bionic Ear Association (BEA), has become a founding member of the Alexander Graham Bell Association for the Deaf and Hard of Hearing’s (AG Bell) Circle Alliance Partnership. The partnership will advance the organizations’ common goals and is being funded through a $100,000 contribution from Advanced Bionics. The contribution will provide parents of children with hearing loss, adults who are deaf and hard of hearing, educators of the deaf, and clinicians in the field of hearing health with information and resources that promote listening and talking.” (2004 press release and 2006 release renews – havent seen any more recent notices)

    Now i have searched the AG Bell Assoc website and while i can find the Circle Alliance Founding Partnership badge with Advanced Bionics and Cochlear Americas still proudly displayed on the home page i can not find any notification of the latest Advanced Bionics HiRes 90K recall – wouldnt putting that notice up in the AG Bell site cover the “information and resources” part of the partnership deal????

    Doesn’t AG Bell have an obligation as a leading organization serving Deaf and Hard of Hearing people and parents to notify them of their partner’s recall – ya know in the spirit of information sharing?

  83. Candy
    Nov 29, 2010 @ 13:50:45

    I think I agree with Frances, have always seen ASL as bad English. Considering ASL as bad English is what it is and does not necessarily mean I look down on ASL. Just what it is.

    Have to go, won’t be around for more excitement today.

  84. handeyes
    Nov 29, 2010 @ 14:02:52

    ah a hit and run

    i recommend no one jump to this bait

    it will be up to Candy to come back and PROVE that ASL is bad English otherwise we just let the falsehood sit where she laid it

    by the way – English is mighty bad ASL as Japanese is mighty bad Polish

    psst – we r speaking different languages, not modalities

    beautiful blue skies here

    i thank u……..

    peace

    patti

  85. handeyes
    Nov 29, 2010 @ 14:05:18

    oh and if anyone cares to comment re: AG Bell’s complicity and moral compass as it pertains to its partnerships – pls do

    oh and if anyone cares to comment about how so many of us have been turning a blinds eye on folks who have had less than dreamy experiences with CIs – feel free

    peace

    p

  86. Candy
    Nov 29, 2010 @ 14:11:32

    Okay but not now…I’ll be back. You know I don’t do hit and runs. 😉 I have a life and a job, ya know. You do too, right?

  87. finlake
    Nov 29, 2010 @ 14:35:34

    Uh, actually ASL cannot be bad English, because it’s like saying Chinese is bad Japanese. Just my logistic point of view.

    RLM, I think there’s a low percentile you have not read Candy’s blog, but I’ll reiterate it for you on what I said over there. Assumption is known to be a mother of all f–k ups. However, your reputation precedes you, so I’ll leave it as that. Have a good day, good sir.

    Patti — please check your email.

  88. finlake
    Nov 29, 2010 @ 14:36:05

    Err, logistical point of view.

  89. Don G.
    Nov 29, 2010 @ 14:42:33

    Patti! I always thought that stone thing outside Ely center was an ugly, nonsensical waste of Gallaudet’s money as “art”. Only thing it was good for was sitting on, and that’s IF you could clamber up on it! Titling it “Deaf Education”…. that makes PERFECT sense!

    Gina — I join Patti, Shel, and D-Rez in their perceptions that Frances Parsons looks down on ASL. I have seen numerous examples of her writing in which she OPINED that ASL is bad — bad for Deaf children, bad for Deaf adults, bad for Deaf education, bad English, etc., etc., etc.

    If ASL is bad English, then Spanish is bad English. So is French. And Hebrew. And Swahili. And Tagalog. And Dutch. And German. And Arabic. And….. need I go on? American Sign LANGUAGE!

    Diglossic — I agree — it still fits — it’s not just SIGNED English that has the “prestige”, it’s ENGLISH, period!

  90. DeafSweetMind
    Nov 29, 2010 @ 14:59:03

    I am with Don G , Patti Durr, Shel, and Diane R all the way.. Thank you for fighting hard everything, people need to know the whole truth. It s so sad to destroy everything (natural methods)by Audism/Medical for what Deaf community had offered for Deaf babies/children. I tried so hard that break my heart every single day, my eyes breakout into a tears and cry every day for a long time. I know the whole truth that came out from the bottom of my heart that is all there is to it.

    All I can say I am very glad truth came out as far that makes my big smile to know more people are aware of it.

    Dont give it up until we get what we deserve our Deaf American Civil rights. That is our Deaf human’s right.

    Thank you so much for believing in me that means a lot to me after I fought so hard for a long time. I appreciate very much.

    Deaf SweetMind

  91. Dianrez
    Nov 29, 2010 @ 14:59:21

    Candy, consider: “Pennsylvania Dutch is bad German. Yiddish is bad German or bad Hebrew. South Sea Island patois is bad English.” Look at it that way and you lose the linguistic interest, the cultural richness and the love that is in those languages. You’d have to be meshugga to overlook that.

  92. finlake
    Nov 29, 2010 @ 15:05:23

    Is it supposed to be “Meshuggah” ?

  93. RLM
    Nov 29, 2010 @ 15:45:41

    First of all, I always present the facts in my blog and FB postings especially some inaccurate information. I do bear the entire responsiblity for my blog postings and not run from the so-called inaccuracies.

    I know Frances Parson for more than 20 years after finding out about her Gallaudet students mobilized to save her Gallaudet professorship job. Frances got fired by the Gallaudet Arts Department for some reasons.

    I often interviewed Frances Parson from time to time over years for my “Deaf Militancy” research paper and supposedly the book (my friend tossed out all ten years of research into trash while I was in the nursing home after the auto accident).

    I often find Frances to be sometimes questionably credible regarding her so-called claims from death threats to other things. I did ask Frances for any “black and white” evidence related to death threats from students or whether she reported to the Gallaudet DPS (DOSS) or the DC Police about the “death threats being taken against her”.

    Jean Boutcher, Frances Parson apparently got the bilateral cochlear implant few years ago. She never told me at all about
    having the CI. I seen her wearing the device under her hair. I
    said nothing about it. I usually let people tell me things by
    themselves than pressed upon.

    I had people informed me things about Frances Parsons on the issue of ASL and other subjects. I always went gently to Frances to get her side of the story, etc.

    For example, Frances Parson resented anyone deaf coming from the deaf family. Whoa! Several deaf individuals clearly saw her making the nasty comments about deaf families. She confirmed it with me via private talk. Frances ever challenged me “YOU DEAF FAMILY?”. I replied “I interview you here, not about me. Okay?”.

    Frances Parson told me why she pushed the SEE and Total Communication as only the way to convince other countries’ government and educational ministers and educators that the SEE and Total Communication will help deaf students to excel in the written English, ex. Phillippnes. She also said “that was much better than teaching deaf kids thru “oralism. Right???”.

    I always enjoy talking with Frances Parson in despite of her philosophy on deaf education. I do like her as a person.

    Truth must be told anyway. I think about writing the biography about Frances Parson which she is very interesting and fascinating
    deaf individual.

    I guess that I have to post the video interview of Frances Parson to see how objective and fair I am with her and other individuals.

  94. RLM
    Nov 29, 2010 @ 15:52:40

    Finlake,

    You personally attacked me. I wonder why didn’t you unmask yourself to show who you really are.

    Why the psynedoysum online alias with the grotesque image posted?

    I do not hide behind any kind of fictional alias. I always
    being open for who and what I am.

    Too bad, we are not in Europe so far. The psynedoysum (msp)
    online alias are not allowed in Europe. We must get the U.S.
    Congress to pass the legislation to disallow that kind of alias.

    Nelson Rockfeller once told Richard Nixon – “Come out and show
    your real face”.

    Let’s stick to the defective and recalled CI products! Okay?

  95. Candy
    Nov 29, 2010 @ 16:27:29

    I’m going to be brief….after reading a few interesting comments, I want to throw in something and maybe elaborate more later. Not well versed in foreign languages, I agree that one can’t say chinese is bad japanese. Bear with me…first off, as a child with a very inquistive mind, I have always pondered these things growing up…these are my views based on my deep observation of the deaf community. That said, ASL is not English. True. However ASL is based on English. Ergo, ASL is bad English. Without English, there wud not be ASL. watch how these deafies mouth move…what are they saying?? Their mouth movement indicates English whilst signing in ASL. I had intended to blog on opposite view of the man who claims that ASL is a language. So, for now…this is what you’ll get from me. All in good time.

  96. Don G.
    Nov 29, 2010 @ 16:52:00

    Ugh. “ASL is based on English”….. sigh…..

    To respond to that, I would need to write a dissertation, and I’ve already written one (not on that particular topic).

    ASL is NOT based on English. ASL developed INDEPENDENTLY of English. However, ASL is in constant CONTACT with English. ASL is OPPRESSED by English (in that we are/have been constantly told ASL is “bad English”, ASL is not as good as English, ASL is not good enough for use for educational purposes, etc., etc. Deaf people are not raised to use ASL. Deaf people are not taught about the grammar of ASL (think about how many YEARS of English grammar we’ve been taught. Then think about how many YEARS (0) we have been taught about ASL grammar?)

    So, with this oppression from English, Deaf people have internalized this oppression and it comes out in their signing (as well as thought processes). We sign in more English-like order. We utilize non-ASL (invented from SEE and other systems) signs. We mouth English. This all comes from the language contact and internalized oppression of English.

    BUT BUT BUT ASL is NOT NOT NOT based on English!

  97. handeyes
    Nov 29, 2010 @ 17:14:24

    ya all r very funny today

    meshugga R us – it may seem

    re: frances – RLM thanks for sharing that info and i hope u will share the video over at ur place

    RLM – finlake has a full right to use a pseudo-name

    just fyi – if u want folks to stick to the point of this thread – u would do well to stop dragging in off the point info and declarative

    Candy – since u have challenged many many folks in this thread and elsewhere to come bearing proof and facts and if none is to be had then to not make such assertions – i bid u to do the very same

    ie – pls bring me EVIDENCE (not personal experience) that ASL is bad English

    the facts and nothing but the facts pls

    in the meantime folks – anybody care to discuss the topic of this blog entry – see top top very wee tippy top

    thanks

    Peace

    Patti

  98. Candy
    Nov 29, 2010 @ 17:58:43

    Patti..

    These things are debatable…there are no absolutes. I can argue that ASL is bad English. And everyone can argue against it.

    Like I said…all in good time, I will address it further.

    Yea…ppl..Patti wants to get this post topic back on track….

    In spite of the recent event with AB, CI’s are still here to stay. That is a reality everyone will have to live with.

  99. Ann_C
    Nov 29, 2010 @ 18:45:27

    Amazing how the comment section has veered off the topic of the blog, which patti keeps pointing to– the AB recall of the HiRes 90k CI’s.

    I commend Sonova for taking it upon itself to inform current users of this model about the recall. Just because there has been a recall doesn’t mean that ppl will stop using their AB CI’s or will not consider CI’s in general. The recall is a warning notice to users of this particular model CI, that if they experience symptoms as related in the recall to immediately see their doctor and arrange to have the device explanted. The parts causing the 2 failures have yet to be determined at this time. It may be faulty vendor parts that can be replaced and tested before this model CI can be implanted in future. The FDA has very stringent tests for cochlear implant technology and performance.

    This raises the question of whether or not Sonova is providing any financial compensation for explantation and re-implantation costs. I’m trying to find this answer in the articles being published about the recall.

  100. Jean Boutcher
    Nov 29, 2010 @ 19:36:38

    I have finally caught up with reading all comments in responce to Patti Durr’s blogpost. The most terrorising of all comments is as follows:

    RLM wrote to Candy:

    I am not getting any personal with you, Mike and JPR. Why should I do that? All of you are not targeting me personally.

    I just want to unmask people, who keep defending the corporatations and organizations that exploit deaf signers and kids. That turn into my own business to expose individuals whose do the real harm to our deaf kids. That’s who I am.

    That are more like psychological warfare than personal vendettas to pull people out of their hiding caves. I am really good at this stuff. 🙂

    I have found Robert L. Mason’s comments about Candy and JPR to be quite disturbing. He must have of late been consuming many Lotus plants after reading Tennyson, for he says he does not want to get personal with Candy and JPR; yet; he says he wants to work to thunderously unmask Candy and JPR. Then, in the closing of the comment above, it not only sounds intimidating but also terrorising. Worse yet, RLM boasts with with pride saying in the last sentence, “I am really good at this stuff.:)” This is an act of terrorism! So inconceivable! More qualms from this as well as from those of members.who are falsely proud of their disgusting, infamous
    Email Group. This and that liken to the acts of immature fraternities, recently written by Katherine Parker in regard to the TSA pat-downs!

    Ergo:

    What is RLM’s motive in doing above? Has he ever come into the full realisation that his act likens to an act of a blackmailer paid by some people who want him to attack certain individuals. It has been being talked around in town for several months about some deaf people paying a blogger to attack certain deaf individuals by constantly stalking, harassing, and terrorising them. Has anyone mouthpieced you and/or paid you into stalking them. This is a criminal act — apparently unbeknowst to you.

    RLM seems to delusionally think that he would be sung and honoured as a hero with a gold Medal of (cowardly) Deafhood or a kngithhood from the Queen Elisabeth II by pandering to the bribers! I, therefore, hasten you to shape up or sail.

  101. Candy
    Nov 29, 2010 @ 20:00:16

    Yes…. Jean, the truth is out there. You noticed it. It’s interesting how some people refuse to acknowledge it. Is it fear? what? any input?

    Yikes..me think Patti is about to give out a big sigh…wondering why topic keeps yarin’ off course.

  102. Karen Mayes
    Nov 29, 2010 @ 20:07:13

    Oh wow. Oh wow. I am determined to cut down on commenting on the deaf-related issues, but this blog’s comments… ouch. Especially the boast and the veiled threat :-/

    I feel for Patti.

    Anyway, I like Ann_C’s level-headed comment. Makes me wonder if the heart pacemakers have ever been recalled? I know it’s not directly related to Patti’s blog about recalls, but we all know that the man-made machines do exhibit defects as well as they wear out in time.

  103. Dianrez
    Nov 29, 2010 @ 20:32:41

    Sonova has no choice in this matter. Legally, they are responsible and must recall defective devices.

    Whether or not they will pay for replacement and/or explantation is still to be determined, when they research their legal responsibilities and the most expedient way to resolve it.

    They may choose to deny responsibility and force the people to file a lawsuit to recover damages. Or they may delay. Or they may cover costs, but with limitations. There is a lot at stake involving their reputation, their market share, possible fines, possible lawsuits and loss of revenue.

    Overall, they will want to limit their losses and forestall an onslaught of hundreds of dissatisfied people claiming costs.

    I feel that giving the company accolades for issuing the recall is giving them too much credit. They are a business that answers to their stockholders and it is naive to regard them as angels. Actually the service of providing hearing assistance is secondary to making large money.

  104. handeyes
    Nov 29, 2010 @ 21:08:13

    candy
    re: your ability to argue that ASL is bad English – i have no doubt that u can argue that – i have seen how u argue. but it will not be fact or research based and i only got eyes for that me friend

    im still looking for that common ground – u know where i laid out some things that i think we might be mutually concerned about but seems u r determined to disagree to agree

    or r ya gonna disagree on that one too? ; )

    re: CIs are here to stay – dont think anyone has said contrary to that except perhaps Dianrez in suggesting that they might become antiquated with the advent of stem cells and all the latest and greatest in the ever ending quest to eradicate being Deaf

    NOTE: some folks have told me they r holding off on getting a CI cuz they r waiting for the stem cell stuff and the CIs might wipe out any workable hair cells etc for the stem cell later soooooo

    have no idea how accurate this is but just something i have seen folks say

    Ann_C – long time no see ann_c

    how u be? just so u know it aint the first nor will it probably be the last time Advanced Bionics has had troubles with its CIs

    also as deafa notes – wow that must be mighty serious – 2 cases and 9 possible others (see Advanced Bionics letter to the recipients / parents) – this aint the run of the mill recall – this is these things got hot and went bonky inside the head OUCH!

    any thoughts re: AG Bell Association having Advanced Bionics and Cochlear Americas as their Circle Alliance Founding Partners when both of them have been saddled with fines

    re: FDA – oh i wish it had stringent protocols and all that but sadly it does not appear to be the case a present. in fact it recommends CIs at 12 mo and up but we see many a CI doctors implanting earlier (5 mo is the earliest ive seen in the U.S. to date)

    Jean – don’t forget RLM jabbing at finlake also and then finlake returned the favor with a note about RLM reputation and the RLM makes some “questions” which imply accusations cuz in other spaces “questions” are considered safe ways to diss folks

    and so it goes – back and forth and up and down down down goes the see saw / the teeter totter

    and me – i have left it all up here for all to see – aiming to make the invisible visible (re: $ for bashing UGH – this is news to me and utterly disgusting)

    but lord oh lord what the cat is dragging in here at patti’s place eh

    it is more than enuf to make a gal throw up her arms and do more than sigh – run screaming for ’em there hills

    yep – im just about ready to white flag it

    im just about ready to say what is the BLOODY point

    im just about ready to say – UGH! and Enuf and I surrender

    im just about ready to never b/vlog again (oh i see u all grinning and checking off ur list – yep we got one more down ya hoo for us (and here “us” should read any variety of folks – Dead Deaf Gal a walking be me for many a moons now – u know the surest way to kill off me voice is to make me feel it is so utterly pointless that i give up – dont matter what B.S. u hurl at me and what lame-a$$ threats u toss at me (yes i do notice how NONE SOME of you did NOT DO any public shout outs about the threat to me home, or how badly u try to smear me or implicate me – that is not gonna do the trick – what will be the surest way to get me to close this digital door firmly and permanently will be to see that ya all still dont have a clue but alas good for me (nah not sure if its really good for me but perhaps good for humanKIND) there are plenty of folks who READ this stuff and dont bother to comment – who read it and ….

    think!

    think!

    think!

    and question

    and investigate

    and wonder

    and ponder

    and hope

    hope for what???? u ask – well hope for equality of condition
    hope for peace and love and justice

    hope for the best and not “better than nothing”

    hope for the best and not “good enough”

    hope for the day when they too r jumping at da sun because they seen some truths

    the truth is –

    folks with CIs are not bad

    folks who want CIs are not bad

    folks who oppose CIs are not bad

    folks who don’t want CIs are not bad

    the lack of facts about CIs is bad

    the mad rush to implant and forbid a fully natural and accessible language is unethical

    the over pricing of CIs and digital hearing aids is bad

    forbidding a Deaf child from the right to a fully natural and accessible language is bad

    i am not talking about accidental oralism – i am not talking about the kids who were dumped in the mainstream because they r good at faking it until the make it or because they have “just enuf” hearing / speech to get by

    i am talking about the programs, schools, doctors (yes there are some doctors that say – want a CI for ur kid u gotta go oral / aural only), judges (yes there is a judge that said a child must use her bilateral implants all her waking hours), parents (yes there are some parents that even tell their ADULT Deaf children not to sign in their homes)

    that aint cool

    the silencing of folks about their stories – true stories is not cool

    the lack of any media coverage of the folks who decided to have their CIs removed is bad

    the lack of any media coverage of the folks who stopped using their CIs but left them in is bad

    the lack of accepting and respecting Deaf folks as equal human beings on this planet is NOT COOL

    and this applies to all Deaf folks

    Deaf folks who can speak and hear a plenty are still often discriminated against

    Deaf folks who can ASL and see a plenty are still often discriminated against

    Deaf-Blind folks who can do any and all of that stuff are still often discriminated against

    add race, gender, sexual orientation, differently ableness, etc and u will see the discrimination usually increase

    sadly

    but me, myself, and i – i am to see if we can take a wee baby step towards making “we hold these truths to be self-evident that all men are created equal and…..”

    yep i do

    i truly do

    at least for today

    despite how hopeless it may utterly seem

    some GEMS:

    Amy Cohen Efron’s The Greatest Irony is a very important vlog that is in ASL with captioned and voiced English
    http://www.deafeyeseeit.com/the-greatest-irony-free-online-view/

    Jokinen
    Link http://books.google.com/books?id=eo47KkIfD8IC&pg=PA209&dq=tove+skutnabb-kangas+cochlear+implants&hl=en&ei=vunzTPG4GsOqlAfqu7yLDQ&sa=X&oi=book_result&ct=result&resnum=1&ved=0CC8Q6AEwAA#v=onepage&q&f=false

    See p. 209 – might be of interest

  105. handeyes
    Nov 29, 2010 @ 21:51:27

    NOTE: 334 views of this blog entry today thus far

    since it got posted on Nov 24 there has been a steady raise up up and up

    as the drama increased so did the # of clicks

    this is a shame folks – a true shame

    we r better than this right

    better angels of our nature and all that

    so for u the viewers – yep i see u ; )

    u r grand

    u r good

    be brave and be strong

    say something / do something

    jump at da sun

    another good video of Hearing Parents being interviewed about their experiences with their Deaf son and the system – it pertains to AB 2072 but pls just focus on the issue of CIs etc

  106. Candy
    Nov 30, 2010 @ 00:40:02

    Patti..

    I will blog about that soon. You’ll see what I mean. There is NO concrete fact that ASL is a language. That is why it is debatable. It does not mean what I say is a fact. Neither does it mean what you believe is a fact either. It is all debatable. There is no absolute to this issue. Not yet so far. Because there are people that were able to discredit what others have theorized about this topic. You choose to believe so and so and I choose to believe so and so. Who is right? That’s debatable.

  107. handeyes
    Nov 30, 2010 @ 00:43:38

    RLM – i moved ur comment to trash as u were trash talking (ie a bit of name calling here and there)

    u can always find folks u want to communicate with via facebook email or ur own blogsite

    we aint moving backwards at patti’s place – we be moving forward

    this here thread is now reserved to talk about CIs and ASL + English as they relate to CIs and FACTS or the lack there of

    i dare ya folks – i dare ya to stay on topic

    (yes i know previously i begged u but since that didnt work im taking out the big guns)

    i still come in love and positive peace folks – i do love u all

    love, love, love – all we need is love love … love is all we need

    much positive peace (MLK defined positive peace not as the absence of tension but rather the presence of justice)

    patti

  108. handeyes
    Nov 30, 2010 @ 00:46:37

    candy

    before u blog – u might want to check out AG Bell Association’s position statement in which they recognize ASL as a REAL language and all the other tons of scholarly books, articles, and studies that have proven beyond proof that ASL is a language

    but heye i bet ya there are still folks out there who say the world is flat and the earth is the center of the universe

    we do agree tho that some folks will and can debate anything

    that is not debatable (but shall i try…. nah got better things to do – off to paint pottery with me pal)

    its ur bed – u may lay in it. i shall not be by ur sweetshop to watch the spinning of that windmill

    peace

    patti

  109. Candy
    Nov 30, 2010 @ 00:47:54

    Patti..

    No one knew who was making that threat to your home. You know that.

    I kind of suspected who It might be, as did finlake, but that was not enough. Who was “we” supposed to make a “shout out” to? Really.

    You also knew that I wasn’t cool with that, neither was anyone else who was aware of that threat. So, what happened with the investigation? Did you find out who? I bet many others here aren’t even aware of it.

  110. finlake
    Nov 30, 2010 @ 00:53:05

    PDurr, thanks for recognizing and respecting those who has a preference for using pseudonym names. I appreciate it, and I’m sure others do, too. ‘sides the topic of pseudonym is quite a deviance from your original blog entry.

    I apologize for the sheer density of his inability to read the entry and comments CAREFULLY and his tendencies to go off the point by making a preposterous claim of -EYE- shot him first (cued cough) as well as making an ass out of himself by assuming.

    ——

    Now, back to the topic, patti, it was real good to see you today and after my visitation to the book store on campus to find out the cost of my book, I casually observed a great number of d/Deaf students with cochlear implant. I’ve made my decision. No more bashing towards the C.I. usage, because in the past, I have felt the C.I. usage was somewhat “threatening” to our culture. Now? It’s 2010. Time for me to get with the programme and accept the inevitable. We could pass on our culture to those future d/Deaf generation, as well.

    As for the device recall/risks, I find it interesting and patti, I would be interested to go for stem cell whenever my HA fails on me. So far, it has not in 30 something odd years -knock on wood-. And yawp, it will be my -last- resort. I will _NOT_ succumb to the evangelistic movement to go completely 100% all the way DEAF (or was that DAFT?) in a largely dominated hearing world, considering my work environment has a very heavy dependence on communication largely for safety measures.

    —–

    BTW, Barb DiGi gives you her regards. -wink-

  111. brenster-
    Nov 30, 2010 @ 00:56:48

    your original topic… pretty much on same page. there needs to be more findings on different areas – not just focusing on “poster kids with CI.” Not surprised about AGBell. Typical to see the sweeping things under the rug on their side. All about marketing & money.

    Your comment thread… nothing much to comment except the claim that ASL is broken English, that ASL is not proven a language, that whether ASL is language or not is debatable is completely absurd! One reason to suggest that ASL is broken English is based on how some ASL signers mouthed in English sure brought a big laughter out of me! Sorry, but it is a poor argument! See, many ASL signers were influenced by the ideology of oralism – they were forced to use speech all time. That is why! At the same time, it’s mind-blowing that this notion that ASL is based on English still exists. It is 2010! Still? Wow! On the other hand, this coming from Candy, I’m not totally surprised but am amused.

  112. handeyes
    Nov 30, 2010 @ 00:57:04

    candy –

    all ya needed to do was to put a little comment in that thread saying “not cool fool. threatening someone’s home just aint cool”

    i aint upset that u didnt

    i just find it curious and contradictory

    the only reason why i bring it up here is to note how rough the waters are here in the world wide web and how tangly things get

    mighty tangly

    peace

    patti

  113. handeyes
    Nov 30, 2010 @ 00:58:16

    comments coming in rapid fire but i must fly

    see ya latter alligators ; )

    peace

    p

  114. DeafSweetMind
    Nov 30, 2010 @ 02:46:55

    All I am seeing is that you all argue over nothing since you already saw that there are many failures with Deaf babies/children’s mental and physical health. These are damaged or destroyed by being forced to use English (spoken language). After all they were not having our ASL first – where it should be. So, what’s your damn point?

    Which side are you on? NO more neutral sides; that would not be fair at all.

    I’m here to support ASL plus English; that is all I can ask for Deaf babies/children because they are actually Deaf if you mind. We understand the concept of ASL that is very important for us to get it first before the concept of English language because it helps us get many light blubs. You forgot that there is a real huge Hearing disorder or not being able to understand the spoken language with HA or CI hearing devices. So mind you people! Read the term of “DEAF” itself then tell me what does it means to you, HUH!! “Speech impairment with Deaf voices” – what does it means to you? No one can hide our being deaf; so be it.

    I don’t appreciate that this is going on ever since we knew that devices are the DEATH WARRANT of our Deaf humanity, and you denied it very badly. You don’t give a damn about our natural method that works so well and is priceless. We are not rich or making money to make our living because we are going to be disabled. There are too many deaths going on with Deaf babies/children/adults for years. No matter what you are saying in here. Here is HA/CIs are gonna make us more disabled than ever. I’m just fed up with your audist and dysconsicous audist attitude. Enough is Enough!!! That is what the CI industry wants though then they can claim to be able to “cure” the disability and it cannot be cured. I dont want to be “cured” because I am not broken if you mind.

    I’ll get fixed what’s broken but my deafness (I dislike that term) is not something that is broken. It’s natural causes by the original disease that has nothing to do with Deafness. Deafness itself has no disease at first. Mind you! As well as you cannot fix it by natural causes of the disease like nerve disorder or Meningitis

    I do not trust Frances Parsons because she was the sly one who disrespected their true native sign language by other Deaf people of Deaf community. And this was in their different cultures. I disagree with the idea of wiping out their own Deaf language in their Deaf community of Deaf cultures.

    What’s more I might or might not be a Deaf militant because I came from hearing family, and I have had many frustration experiences in a real world that they created. This world had more communication disorders so be it. You cannot point at me for having the Communication disorders if you mind. You are reading what I’m writing to you so does it tells you that I have the communication disorder because i am deaf? What a big joke of your own audist/dysconsicous audist attitudes! All lies about us and our intellectual skills by their own audist bias all along.

    So where is our Deaf civil human rights? our Deaf rights? Hearing people make money off of us and left us more plight of sufferings. So who you think you are? CI industry is full of BASTARDS and ABUSERS.

    I cannot sign ASL fully, I cannot speak fully, and I cannot write Advanced English fully. So that’s the three things are very important; however I don’t get them all. So I’m not that stupid as you think since you all have college education or higher education degree . You don’t think straight like I do. Deaf babies/children’s basic needs must be met whether you like it or not.

    The answer is ASL because it works for Deaf and Hearing babies/children. So the basic language needs of Deaf babies/children need to be met just like the basic language needs of hearing children.

    Ears do not think but Brain does! Deaf Eyes are for us to see to be heard and Deaf blind are for them to feel by their hands to be heard by our American Sign Language. Get it?

    LOVE AND PEACE!!! 🙂

    Diane Lowery aka Deaf SweetMind and SweetMind

  115. Dianrez
    Nov 30, 2010 @ 02:49:35

    Patti, I’m sure all the people here aren’t cool with egging your house or the talk that went with it, and thought I had said something.

    Just for the record again for posterity: talk that intimidates, threatens a person or threatens damage to property ain’t kosher. It’s verboten by any law or convention. It’s a serious bodderation that someone booger-ups your house, ain’t cool nohow.

    Now that I’ve exhausted all the Yiddish and Pennsylvania Dutch in my vocabulary, let’s hope that all agree publicly. Did you identify the culprit? Hope whoever it is gets egg on the face.

  116. handeyes
    Nov 30, 2010 @ 03:15:45

    heye finlake

    since ur apology contains some insults towards another – i cant really accept it. thanks but no thanks on that one and another comment like that and ill be clicking trash ur way too – good sir ; )

    gotta play fair me

    re: ur preference for stem cells – im told it will be 20 years out and of course if and when it does materialize there will be lots of need for adults to test on so take a number if and when and they will surely call ya

    re: keeping ur Hearing Aids – i be fine with that, wanna get a CI or two i be fine with that, wanna do the brain stem thingy i be fine with that, wanna do the stem cell groove – i be fine with that

    what i aint fine with is the extraordinary profit behind the HAs and CIs and accessories

    they paint it like its philanthropy but it sure is not

    it is NO NO NO accident that Sovona spun that press release a mighty fast to all of the business outlets – sharing with the share holders the limited, carefully selected, drafted and spun (ie competitive intelligence – ie Alexander Graham – no not the original but rather the current CEOs – expertise)

    its called damage control folks and its just the iceberg but lets rather waste our time on something that happened several decades ago in foreign lands and really is a case of “better than nothing” or better yet lets waste our time debating whether or not English is a language

    now that would be fun since everything is now said to be debatable

    shall we dance?

    ur spin

    or maybe we shall debate whether or not it is a “largely dominated hearing world”

    why not

    seems everything is up for grabs here at people of the eye

    nah lets not – instead lets talk about wanting the CIs to be safe

    i really have no idea why folks r still minimizing, dismissing, defending, deflecting, and distorting FACTS

    myth maker myth maker make me a match spin me a…..

    i have not said all CIs are bad, broken and bonky

    i have not said all CIs are good, great, and gorgeous

    i have said – GEEZ look at this bloody recall YIKES what happened in those cases – isnt it freaky?

    and yikes looks like Sovona is regretting the day it ever rescued Advanced Bionics

    and yikes how to babies indicate that the inside of their head is zapping when the parents are instructed “they might cry at first – that is NORMAL…..”

    and yikes facial paralysis is no fun (even if now they can treat some of the cases with steroid shots what about the old timers – u know the test subjects that didnt realize they were test subjects – read the lit and u will see we have learned a plenty from past cases that warranted explanation)

    and yikes about the vertigo (yes i do know some folks get CI to treat their vertigo and irony of irony some folks end up GETTING vertigo after they get CIs – kinda like the meningitis – is this the laws of nature saying ta ta? who knows)

    and yikes about AG Bell Association Circle Alliance Founding Partnership being two companies (Advanced Bionics and Cochlear Americas) who have gotten HEFTY fines for faulty CIs (many not just one) and / or unethical dealings (kick backs anyone???)

    and yikes about how much flashy, glossy, prutty videos, brochures, kits, paraphernalia is out there promoting the world of sound and the miracles of CIs while there is NO NO NO oversight or obligation to report and show the not so pretty pictures

    odd odd odd

    but u know what is required when corporate deviance is at work????

    whistle blowers folks

    somebody with a moral compass that is not set to profit – cha ching cha ching cha ching

    somebody with a conscience

    sooooooo we shall see what we shall see but in the meantime – ya all can be puzzled why there is such a DEAFening silence in terms of actual facts and data about how many folks stop using their CIs 5 -10 years out or once they hit an age where someone is not saying must, must, must

    now i know there are plenty of folks who will keep using theirs and would run for the newest upgrade surgery etc etc but we also know there are those who dont and wont

    who speaks for them????

    i did ask someone once – why is it u dont share this and they said “cuz it will hurt my parents”

    yep – im crying

    peace

    patti

  117. handeyes
    Nov 30, 2010 @ 03:31:16

    brenster

    thanks for ur comment

    re: candy – well i am surprised and shocked that she really has the mind that ASL is not a language

    linguicism aint cool

    but i am totally thankful that she outed herself on that one – certainly makes a lot more things self-evident to me

    getting clearer now, getting clearer now…..

    can u hear me now???

    how about now????

    yep coming in loud and clear – gotcha and thank u

    peace

    patti

  118. Shel
    Nov 30, 2010 @ 03:48:59

    It seems to me that many who support CI (and hear-speak-ONLY ideology) are either NOT aware of ASL or plainly REFUSES to recognize ASL as a bona fide language . THAT explains in part why professionals feel no qualms in withholding ASL from Deaf children and encourage the monolingual mono-modal approach, to the detriment of MANY Deaf children’s language and cognitive development and mental/emotional well-being.

    That, coupled with the profit motive of CI companies, makes for a disastrous combination. Yet, people defend these companies?! People defend the monolingual mindset, when it’s been proven that multilingualism (bilingualism, trilingualism, etc) have benefitted children more in general, let alone Deaf children?

    For benefits of multilingualism and bilingualism, all one has to look to European countries and Canada, respectively.

    And people remain in the dark ages of imperialistic monolingualism with profiteering in action? Monolingualism and profiteering in the name of an ideology that has its roots in eugenics( social Darwinism at its finest, ladies and gentlemen).

    Never mind the cost to children, to governmental coffers that are reduced due to increased welfare payments to recipients that have been cheated out of their language, and decent education.

    But this isn’t of importance to the CI industry. Like others have mentioned: glossy brochures, flyers, and websites have been created to make CI attractive especially to an implant-crazy country (breast implant with silicone that leak comes to mind)

    The profit is more important than the dameage to a few children, especially when said company has money to hire propaganda machine that includes PR teams that specialize in damage control.

    It is up to consumers AND people in general to be inquisitive as to why it is acceptable to:
    a) produce defective devices and put them into humans, especially the little ones,
    b) refuse to remove said devices when there is a great will to implant those same devices (regardless of a CI company’s reputation)
    c) have a concerted effort to get parents to implant children and direct them to damaging monolingualism (and mono-modality) where acquisition of language is NOT guaranteed
    d) have a concerted effort to HIDE those who have NOT benefitted from the CI behind glossy models of poster children

    So, why are we going after red herrings when we should be analyzing the above and the information that Patti presented in her blog?

  119. handeyes
    Nov 30, 2010 @ 03:49:34

    Diane Lowery aka DSM

    no lopping the “audist or dysconsious audist or bastards or abusers” at anyone in this thread please – u can refer to an attitude or a statement or an action as audist or an example of dysconscious audism but the name calling – nah me no like

    now regarding ur whole comment – im lost as to who u are addressing

    if u r addressing me – i think ive made it clear i am not a fan of neutrality either. i think i have made it clear that i do not think CIs and HAs are evil incarnate. i think i have made it clear that i dont want extremist rhetoric

    impassioned sure – ill allow it cuz others have had their day in the sun here in this space also but big club bang u over the head with some statements that r too broad and unsubstantiated or simply “your right to debate” take it elsewhere

    i really abhor falsehoods – dont care if they are directed at AG Bell and co (i have defended them against false attacks a plenty) or if its directed at the big bad wolf (while i have challenged him a plenty i have also defended him against false and unjust attacks)or little ole me (well ok i havent been great at defending meself but its mostly because i dont like folks DISTRACTING US OFF TOPIC BY ATTACKING, DEFAMING, OR JABBING – ie see the very first comment in this thread)

    so if u gotta trash talk me at least come from truths and we will see if it bears any fruit

    i have not changed one iota on my stand about CIs

    i love folks who have them, want them, love them, rejected them, removed them, oppose them, question them, etc

    i want answers

    i want us to question why the answers are so hard to come by

    i want us to think deeply and tread kindly and lovingly while we go about this hard business

    re: civil rights – make a march Diane. would somebody please just stop yapping and tapping and start ORGANIZING – make a march and start PEACEFULLY demanding civil rights for all Deaf folks

    in terms of Deaf children having language rights – i like alot of what lawrence siegel has to say re: the 14th amendment and a Deaf child’s right to a fully natural and accessible language

    now some folks aint so keen on Siegel and Hands and Voices but i think its a step in the right direction

    u see for all the ASL first cries – there simply is NOT the resources out there to implement such a demand

    it does NOT mean we should not be demanding a fully nature and accessible language and English for Deaf babies – it just means we need to be just fair and right when we do that and acknowledge that for many the best that can be achieved is gonna be some variation of signed English cuz out way in the various hamlets of this big ole nation ASL is pretty much non-existent

    still dream and still jump at da sun but dont be soo purist and dogmatic or dig a trench that entraps rather than liberates

    and Diane – i totally understand ur point about being semi-literate / intelligible in ASL, English and speech etc – many folks have ended up being semi-literate in ASL and English and that is the dangers of a 2nd wave of Oralism but i want to tell u

    u have GOOD ENGLISH and u have GOOD ASL, (your speech i can not judge sorry)

    do not let ANYONE tell u otherwise for if they do they r wrong

    ur English is very very very good

    ur ASL is very very very good

    ur heart is very very very good

    u have been hurt

    u have been beaten upon

    but u r not broken

    not in ur ears

    not in ur mind

    not in ur spirit

    not in ur heart

    stand proudly and strongly and send forth LOVE

    we were made of love

    we r a miracle

    it is time for us to shine out of peace, joy, hope and love

    this is not an us vs them

    this is a do the right thing time

    advocate for answers

    advocate for justice

    advocate for civil rights

    advocate peacefully

    truthfully

    endlessly

    without name calling

    without becoming what we hate

    without demanding of others things we do not abide by ourselves

    without hatred

    come from love and know u r loved

    peace

    patti

  120. handeyes
    Nov 30, 2010 @ 04:11:35

    Dianrez

    how do i love thee – let me count the ways

    u totally rock

    i mean this word bodderation – this is gonna be a totally useful word in me lexicon – i thank u thank u thank u thank u

    now when i was saying “NONE of you…..” (NOTE: i went back up to that comment and did a strike through of NONE and added some of you did not….) did a shout out about me house – i was directing that at the folks who were crying big ole alligator tears and demanding shout outs while simultaneously not doing so for others or at others

    u did express that u hoped it was an empty threat and u did check up to see if all was well. u is good egg dianrez

    i was just pointing out since finger pointing seems so dandy these days and since lots of this sh#t that be flying is intended to befuddle, distract, distort, dishearten truth seekers

    so nope they havent identify who the culprit(s) was/were and i pretty much care not

    the intent was clearly to intimidate and threaten and ultimately SILENCE

    yep yep yep

    that is the name of the game these days in the wicked web

    didnt like when bad stuff was being done to others and dont like when its being done to little ole me

    why? cuz FEAR sucks folks

    FEAR is the most debilitation and disabling thing going in the Deaf community

    so its F#ck everything and run time folks or its Face everything and rise

    (did u catch the acronym there???)

    me ill go with the later

    Dianrez – i do thank u for acknowledging that bodderation is not cool and attacks and threats should be forbidden

    amen amen amen

    of course for some that is debatable for us – we agree

    peace

    patti

  121. finlake
    Nov 30, 2010 @ 04:24:33

    Hey, patti, you oughta know me well enough I’m not the type of person who would run away with my tail between my legs. Yep, you know me well enough I would stand up with my hair all brisk in full fluff. You’ve seen it with your own eyes. 🙂 However, I acknowledge the fact about your intelligence to actually read between the lines of what I said. I’ll try my best to refrain my fury when I’m feeling threatened. I will _BITE_ back if anyone whatsoever tries to bite me.

    Well, like I said, I wouldn’t consider CI for a very long time for my hearing impediment has been relatively the same over the years, except that -ONE- day when my left hearing just went … silent. I completely freaked out on that day. That’s when I knew I strive to be able to hear the music being played with my family as well as dancing with my 101 years old grandmother to the old country western fiddling that has been in the family for several generations.

    I also was told the stem cells do exists, but are not available per se via the FCC (if I got the right agency or was that FDA).

    And sweetheart, you know fully well United States of America is a heavily a capitalism country/society, hence profit -IS- the name of the game. ‘sides I do acknowledge CI and digital HA are quite outrageous in terms of the cost, BUT it is quite an engineering feat as well as biomedical electrical engineering and naturally the cost of R&D would incur the cost to the consumers to maintain the R&D amongst variety of cost overhead business as well as pleasing the stockholders (IF the stocks are hot in the market).

    With that in mind, it’s no difference as opposed to Toyota making a recall for the failure of the gas pedal mechanism (or electrically, for I cannot reckon correctly at the moment) after several shout-outs/deaths (if I’m not mistaken on the death part).

    As for “ASL ain’t no stinkin’ good English” paradigm, I’m staying out of that one for I -KNOW- ASL cannot be quite comparable to English.

    If I may add, it _IS_ largely a dominated hearing world.

    Anyhow, I get the gist of what you’re trying to say. It’s no easy feat for a company to make a “perfect” product with 0% return rate of failure. Impossible, I’d dare say so by making an ass out of myself by assuming.

    I’m not gonna get into that argument about babies and parents. I would strongly opine it isn’t a good idea for the parents to implant the babies, but the babies aren’t mine but theirs. Who am I to argue against that? God? I don’t think so because Homey don’t play that.

    Of course, not all of the corporates are “angelic” in nature.

    I know a friend who wouldn’t hesitate to upgrade her C.I. She had to get the strongest one. Unfortunately, it’s quite heavy and does hurt her head/ear at times. She says her wanting to hearing is an uppermost priority for her as opposed to the discomfort they give her at the moment. She acknowledge the technology will get better.

    By no means am I endorsing the C.I. industry for I do know about the kickbacks fiasco amongst a couple ball-busting bust by the authorities to the C.I. industries, too. On the other side of the same coin, the C.I. do have some benefits, too.

    Can’t have it both ways, ya know?

  122. RLM
    Nov 30, 2010 @ 04:27:44

    Patti,

    You done me pretty injustice by allowing other individuals to smear me, ex. Jean Boutcher, Candy and Finlake.

    You are really not being objective and neutral.

    U have the issue with me about Gandhi’s sexual peversion.

    Nelson Mandela also urged historians to dig up his past history of infiedility before he got shipped to the prison.

    How come didn’t you remove others’ slanderous intentions toward me?

    I am going to get the lawyer to sue you, Jean Boutcher and Candy.

    RLM

  123. finlake
    Nov 30, 2010 @ 04:29:44

    Knock that crap off, RLM. This is NOT your blog, but her blog. Respect -HER- blog.

  124. handeyes
    Nov 30, 2010 @ 04:32:16

    shel

    my goodness u got ur thinking cap on dont ya

    especially re: the last mighty question

    i thank u

    re: monolingualism- u have probably already read the article by marrku in the link up above but in case not – check it out. think its right up ur alley in what u have been discussing re: monolingualism-monoculturalism and CI

    http://books.google.com/books?id=eo47KkIfD8IC&pg=PA209&dq=tove+skutnabb-kangas+cochlear+implants&hl=en&ei=vunzTPG4GsOqlAfqu7yLDQ&sa=X&oi=book_result&ct=result&resnum=1&ved=0CC8Q6AEwAA#v=onepage&q&f=false

    it is very interesting that when ive traveled the ocean blue and hung in Europe a bit and Sri Lanka – me signing did not phase folks – it sent no one into deer-in-the-headlights shock stance (no this is not a tai chi move) why were the so aplomb about me difference cuz they immediately took it for a different language (no im not speaking of the folks in Northern Ireland and the UK – sorry me brits friends but those folks did respond a bit “reserved” – hope im not reinforcing a stereotype but i think it is more cultural than linguistic) with the other countries – especially those that have more contact with more languages and also see hand waving as a NATURAL part of human expression – my hand flapping was fine and dandy

    i remember walking out of a deli in amsterdam taking a bit out of me sandwich and stopping DEAD in my tracks thinking – wow not one word was uttered, not one word was pointed at, not one word was written- it was all signed and the guy GOT IT

    like THAT

    so it is doable and i have had some similar experiences in Rochester

    so its something we can aim for – just like the baby signs being all the rage and ASL classes popping off the charts at schools and universities – we gonna see a plenty of folks signing

    seems i really cant escape it in the general population these days so little by little but still there is that greatest irony eh

    good for the Hearing babies to learn but not good for the Deaf babies to learn – for you NO

    hmmm

    re: social darwinism – not sure if u have read Forbidden Signs by Baynton but it is a wow book – a just amazing book

    many folks dont realize but darwin himself probably would have totally objected to social darwinism – his theory was about NATURE selecting not about man hurrying up things and selecting for nature (ie eugenics)

    the fact that Deaf folks still exist on this planet pretty much shows that there is a need to have this biodiversity and trying to eradicate them off the space is not really wise, just right or good

    thank u for stopping by and for ur comment and wow wow wow on topic

    wow

    peace

    patti

  125. handeyes
    Nov 30, 2010 @ 04:59:06

    RLM – i am sorry you feel i have done u an injustice

    i have been trying to steer folks away from slamming people to no avail

    i have never pretended to be neutral

    i am no island

    i dont even support the claim of neutrality

    re: allowing them to say some things about u – i did allow it because i had allowed u to say some things about others a few times then i gave ya the warning then i pulled the comment

    i also wanted to give u the opportunity to respond to any claim since it had been up already while i was out and some folks may have seen it

    re: Gandhi – i do love the man and what he worked for. the claims re: his sexual behavior – i do not know if they r true or false

    vengeance on his behalf would be totally in congruent with all he stood for so i tell u truthfully i have not even thought of what u think of Gandhi in this thread at all today

    i fear that your accusing me of such further reflects badly upon u and not me or Gandhi and im sorry to bear witness to that

    re: suing. i wish u well with that. Libel is very hard to prove. I dont think Slander applies here

    however, if u can pinpoint specifically which comments are libelous – i will look them over and XXX them out if i am of the same mind.

    Much peace,

    Patti

  126. handeyes
    Nov 30, 2010 @ 05:00:47

    im closing comments cuz im going beddie bye

    peace all

    p

  127. handeyes
    Nov 30, 2010 @ 15:16:15

    heye all

    i THINK i have figured out how to set the word press to have all comments come in for my approval and to block a certain commenter who has stated a threat to several folks here in this thread

    i am not sure if the application will effectively apply to this thread or if it only becomes active for NEW threads but we will see see

    re: the “now patti has to approve” i will tell u honestly i hate this but in re-reading this full thread – yes i actually re-read stuff my heart is heavy – it is just sad how we talk at each other sometimes

    and no i dont mean all of ya all – some of u r golden – u shine and rise above it all and talk about ideas and good stuff and dont come dragging in b.s. or crap or deflecting or “-isms”

    but some of us get testy and dodgy and cagey and MEAN – oh goodness mean

    so this is why the moderation is set – boo

    re: RLM – u can email me via FB or youtube.

    to the person i got an email from this a.m. – i thank u. u have sustained me and yep i did see u doing a shout out of not cool re: me house threat (eggs, oil and toilet paper)

    yes we r talking juvenile city folks

    yes we r talking reACTING left and right – with a name here and there – audist / traitor / extremist / fanatic / terrorist / jihadist etc etc etc

    psst – ya all did u know we got TWO major wars going on?????
    Did ya know that the bi- UN – partisan mess is gonna sink the good ole USS US of A lolly pop ship quicker than any terrorist threat

    but heye lets get back to arguing about the height of a letter – d or D for Deaf folks

    remember i already covered that it was actually the last letter that we should be arguing about d or f folks

    as in death of the spirit

    got soul?

    got heart?

    got love?

    then stand up and do a shout out for love and truth and facts

    say it loud and proud

    American Sign Language is is is a language – ya hoo

    Deaf culture is is is a Culture – ya hoo

    Zapping Cochlear Implants are not cool – boo hoo

    Having a circle alliance founding partnership with a CI co that has had numerous recalls and a bit ole fine is not cool – boo hoo

    folks with CIs are great and grand and good – ya hoo

    folks without CIs are great and grand and good – ya hoo

    corporate deviance aint cool – boo hoo

    threats (empty or full) aint cool – boo hoo

    love peace and justice rock – ya hoo

    faith hope and love – rule supreme – ya hoo

    much love all

    p

  128. RLM
    Nov 30, 2010 @ 21:26:02

    Patti, I am okay now. I am cooling down since last Monday night.

    I just got upset that my last comment being unjustifly deleted. I did not make any name callings, but urged one particular individual to make the sincere apology to that decent individual regarding the “monopoly money”.

    I explained to the individual that I did not receive any kind of bribes or $$ from anyone to do the rebuke with someone else. Nor seeking the attention from the Deafhood people or get some kind of award.

    I just want to make an announcement what recently happened in France with the AB 2072-like bill. Both houses, the Nationale Assemble (Assembly) and Senat (Senate) introduced the bill to cochlearize all deaf newborns after the newborn hearing screenings.

    I did not make up this one. Check out Buck Rogers and Deaf France. Okay? Take care, everyone.

    I want to apologize for blowing up my temper last night. 🙂

    Robert L. Mason

  129. handeyes
    Nov 30, 2010 @ 22:30:42

    325 views today but no comments?

    is the settings set wrong or r folks signless or did the threat of a lawsuit silence ya?

    or has the flaming and water tossing run its course and now we dont know what to talk about????

    let me know what is what

    peace

    patti

  130. Joseph Pietro Riolo
    Nov 30, 2010 @ 23:11:21

    I really want to make a comment on some points but do not have the time to do it now. Hopefully, I can do it this weekend. No promise though.

    The threat of lawsuit is very ungentlemanly. While I don’t claim that I am well versed in laws, I believe that there are absolutely no grounds for the lawsuit.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  131. handeyes
    Nov 30, 2010 @ 23:33:06

    heye joseph

    thanks for ur comment

    re: the lawsuit – i think we have made peace on that

    just dont want it to achieve the aim of silencing folks

    glad u showed up to comment – if even just to say will comment more later

    re: ungentlemanly – oh goodness very few of us have managed to act like ladies and gents lately eh

    all our halos be a bit off kilter

    forgive love and move forward

    again thanks for stopping by

    Face
    Everything
    And
    Rise

    folks
    peace

    p

  132. Larry H
    Dec 01, 2010 @ 00:47:04

    The one some of them who had cochlear implant in 1996, & they was very sick. They lost their balance and they now have balance disorder, lost half taste sense, double vision, pass out loss of wage at work and they do get ear infection that never go away always swollen then fine back and forth. They had ci in 1996 then remove in 1999 after remove ci they improve their health but they still get sick many time they did tried to sue but layer say can’t sue and they don’t understand but they need help person.

    Deaf child with implants in ICU, for eye wide open… Wednesday, March 26, 2008. Deaf child with implants in ICU, fighting for life on Easter Sunday of 2008, a deaf child was in the intensive care unit at a hospital. One month ago mother rushed to the ER after she discovered that deaf child’s ear was bleeding. The Doctor quickly unwrapped the make shift bandaging and discovered that there was a ci in deaf child’s left ear. One of them the doctors discovered a clot in left ear. he is now blind in left eye and colorblind in right eye. He will never again see the color of the landscape of the world. He’s stuck with needing to have gauze pads covering his eye, otherwise he will throw up every time he open his eyes. He can’t walk, has completely lost his ability to balance himself. And he is still experiencing intermittent bleeding in his ear. Internal bleeding in the brain is a dangerous possibility. his mother has a ci, but her implants is broken and she hasn’t used it for many years. The boy himself put pressure on mother, claiming that it supposedly wasn’t fair that other children were being implanted but that he wasn’t. the grandmother’s rationale was that ci technology has improved and that it will keep improving. (SCOFF…I don’t doubt it) Then mother made the unfortunate decision to go ahead with the operation. Because of that decision, he is now in the ICU fighting for his life, he may not like to see the world. It break their heart. When he was younger they didn’t have to worry about whether or not they would die or become physically damaged. But today, they have to worry about which one of their children will be next to fall into the put of physical and emotional dispair, with their future being destroyed and take away from them. How could they ignore the fact that the risk involved in ci surgery is unacceptably high? A certain percentage of children will experience life-altering and sever complication and this is supposed to be acceptable?

    By Unknow person who got the reported was come from on the website.

  133. Jean Boutcher
    Dec 01, 2010 @ 01:57:29

    Hi Patti:

    Testing:

    Diane,

    Most Americans are not aware that the term, “Pennsylvanian Dutch,”
    is atually a misnomer. It should have been “Pennsylvanian German” (Deutsch means German in German). It was to Pennsylvania that Germans emigrated between the 17th century and the 18th century while Dutch people emigrated to New York City in 1600s (my father’s ancetors).

    Dutch people emigrated to New York (my ancestors’ home in 1600s).

  134. Dianrez
    Dec 01, 2010 @ 02:02:24

    These are terrible stories, but we need links, facts, documentation. I believe stories like these are hidden away or left in the realm of hearsay so people don’t believe them.

    From reading postings on the Yahoo Groups listserv “CI-Problems” (closed to all except those who have CI’s or are considering them)I know there are stories like this. Just need evidence. While the majority will still opt for CI’s and most will win or at least have neutral experiences, the few that do not have good results need to be heard.

  135. patti
    Dec 01, 2010 @ 02:58:40

    Larry H – can you cite the source of this info?

    truths need to be told and shared – just need stuff verified as lots of false stuff gets spread or exaggerated and that is not cool

    re: families – i have learned of some situations where CIs are causing rifts within families and that is very disturbing also

    Jean – oh PA Deutsch – yes yes that – this is basically what Amish folks speak? sorry im pretty ignorant here

    Dianrez – totally agree – need documentation and first hand accounts and that these stories need to be told and shared just as all the others stuff is out there – this stuff needs to be heard.

    Just the facts folks and a caring heart

    much peace

    patti

  136. Dianrez
    Dec 01, 2010 @ 03:23:42

    Jean and Patti, yes, Pennsylvania Dutch is what Amish speak at home. They were a German sect who were invited by the Pennsylvania founders to find religious freedom. Jean, we share a common ancestry…my father’s people also were Dutch who settled first in Western NY.
    Amish saying: We grow too soon old and too late smart.

  137. Shel
    Dec 01, 2010 @ 03:56:18

    The trick is getting people to open up about those terrible stories. I don’t understand the silence. I mean… if I had a child implanted and something terrible happened to him or her due to the CI device, I would be making a stink and contacting the media and the whole hoopla.

    Why the silence? Why is it so hard to get documentation and first hand accounts of these stories?

    People like Dianrez and yourself, Patti, know of those stories but cannot get them verified via links etc.

    Again, why is it so hard to get verification? Why are the serious issues from side effects of CI being swept under the rug so that little is known?

    OK. Sonova is a bit more transparent than the other companies. Why the lack of transparency?

    Why is all this shrouded in secrecy?

  138. Larry H
    Dec 01, 2010 @ 04:46:10

    Pain and Shocks Prompt Ear Implant Recall
    By Cole Petrochko, Staff Writer, MedPage Today
    Published: November 29, 2010

    WASHINGTON — Makers of a cochlear implant device have issued a voluntary recall of the device due to malfunctions that may cause severe pain and shocking sensations within a few days of activation.

    According to Advanced Bionics, the HiRes 90K cochlear implant had to be removed from two patients after they experienced pain, overly loud sounds, and/or shocks eight to 10 days after the device was implanted.

    The cause of the malfunction is not known, but a company statement says it is investigating the problem.

    Advanced Bionics, based in Valencia, Calif., stressed that the risk of adverse events is remote and that it is working with the FDA to make changes in the product.

    The company is also working with the agency to respond to patient questions and concerns, the FDA said in a statement.

  139. handeyes
    Dec 01, 2010 @ 19:22:36

    From Advanced Bionics
    Tuesday 11/23/2010 at 9:30PM EST (Wednesday 2:30AM UK)
    from The Hearing Blog http://thehearingblog.com/archives/54

    —————**** Recall Notification****—————

    Advanced Bionics HiRes 90K Cochlear Implant

    Dear Cochlear Implant Recipient or Parent,

    Our mission at Advanced Bionics is to improve the lives of the hearing impaired, and the safety and well-being of our recipients is our first priority. Because we are committed to ensuring that our products are as safe as possible, we are voluntarily informing you that we have become aware of an issue with the HiRes 90K cochlear implant. The issue can result in pain, overly loud sounds, and/or sudden shock sensation in the implanted ear while the implant is receiving power.

    Thus far, our investigation shows that of the more than 28,000 implanted HiRes 90K devices, only two explanted devices have been confirmed to have this issue. There are 9 other patients with similar symptoms which our investigations have not yet ruled out as related to this issue. For the two confirmed cases, there were no symptoms upon initial activation of device. However, the patients experienced symptoms after 8-10 days of use. Both recipients were re-implanted with HiRes 90K devices and their clinicians report that they are progressing well.

    We are conducting an extensive investigation of this issue using an independent scientific research organization. Their current analysis suggests that, if present, the issue will first occur within 90 days of device use. However, the onset of symptoms may be delayed after initial activation, and they may continue to occur intermittently. In the unlikely event that this symptom occurs, continued device use may lead to damage to the inner ear and/or the auditory nerve. If you or your child experience pain related to implant use, remove the external equipment immediately and contact your cochlear implant clinician to schedule an appointment. If the evaluation of your device identifies this problem, device replacement is advised.

    It is important to note that it is not unusual for cochlear implant recipients to experience overly loud sounds. Most of these cases can be resolved with standard troubleshooting, such as the replacement of external equipment. The vast majority of these cases are not signs of the issue described above and do not require explant of the device. We will notify you again as more information from our investigation becomes available.

    We sincerely regret any concern this notification may cause. Advanced Bionics assures you that we will correct this issue and continue to improve our product reliability. If you have any questions regarding this letter, please contact an Advanced Bionics representative at 877-577-4628 (telephone) Monday – Friday 5:00 a.m. – 7:00 p.m. PST or http://www.advancedbionics.com (live chat) Monday – Friday 5:00 a.m. – 7:00 p.m. PST.

    In order to assure the effectiveness of this communication, please complete the enclosed acknowledgment form and return it to us at your earliest convenience by using one of the following options:

    E-mail: confirm@advancedbionics.com
    Fax: 661-362-7621
    Mail: Self-Addressed stamped envelope

  140. Candy
    Dec 01, 2010 @ 19:54:24

    Has anyone ever considered that those that wonder why these things others are claiming happens (all that horror stories) are not out there being exposed, is due to all of it being a HYPE.

    Secrets? Really? You believe there is a conspiracy? If so, show proof of that conspiracy.

    Are these stuffs you hear/see by word of mouth? Is that all there is to these stories? No evidence but by word of mouth?

    We know Meningitis had happened, they took care of that via vaccination.

    We know facial paralysis has happened. The 3% I threw out was off the top of my head, I do recall the surgeon saying it is “almost non existent”, meaning the numbers could be lower..maybe .3%? I was told from the horse’s mouth that this is not an issue because they now know what to look for.

    The picture posted by someone on DVTV is another example of hype. Where’s the scar? I looked up close, nothing. It looks more like a really disfiguring skin condition, nothing more.

    Hype

    That is all it is, unless there is something factual.

    I hear things like how AED, if used can kill someone with CI or burn their heads. I spoke to a EMT friend of mine who laughed and said no, that is impossible because the charge goes from one end of defibrillator to another, it ain’t going anywhere. I checked online and found several references to that which says NO to that claim.

    There is a lot of HYPE going on out there.

  141. Candy
    Dec 01, 2010 @ 20:02:50

    And, Larry H can’t even provide cites.

    Shel..

    you said:

    “Why the silence? Why is it so hard to get documentation and first hand accounts of these stories?”

    Maybe cuz there’s nothing to show. Exactly what are you hearing about? What makes you come to this conclusion that there’s secrecy about all of it. Maybe it would make more sense if you explain why.

    you said:

    “Why are the serious issues from side effects of CI being swept under the rug so that little is known?”

    What serious effects? Do you know specifically?

    And, if you have “heard” of these serious effects, whom did you hear it from? And whom did your source hear it from?

    Maybe we can get down to it and decide once and for all whether all of it is pure hype or not.

  142. Dianrez
    Dec 01, 2010 @ 20:38:12

    Candy, hype may not be the right word when it comes to CI failures.

    It is hard to get documentation because the factories are not reporting them unless it becomes a legal issue, which means we are not hearing about the minor problems or non-life-threatening failures that do not affect health to a great extent. People have amazing capablities of tolerance and for accepting trade-offs, but they have the right to know what chances of problems they may get into.

    Candy, there are places such as the Problem-CI listserv where parents and implantees discuss THEIR OWN experiences, the acquaintance that admits to less than optimal experiences, and the occasional admission such as the recent recall which frankly admits to severe pain and electrical shocks.

    To minimize those is hiding one’s head in the sand. These are not hype. Hype is when glossy brochures and grinning professionals promise the miracle of hearing as if it can be easily obtained with no risk at all.

    This is not to express opposition to the CI itself or to negate the positive experiences that people have had with it. This is only intended to give voice to those who have not had happy experiences with it. They deserve to be heard and to be helped, not hidden away or shushed up with money or neglect.

    Candidates deserve to know the truth, ALL of it, and base their decisions on actual probabilities and hard numbers. NOT HYPE. Not optimistic projections, not on glowing promises, nor on model successes. Just the facts and numbers.

    I imagine the truth will turn off some people and they will drop the idea altogether, figuring it is easier to go with a known problem than to chance the probablities. By the same coin, there will be others who are reassured by the percentages based on truthful reports and go ahead because they are willing to take on a known risk.

    Note: I have not touched on corporate deviance, or the calculated acceptable failure rate in manufacturing medical devices. This is a whole other topic that people deserve to know.

  143. handeyes
    Dec 01, 2010 @ 21:53:17

    a friend sent me these links of folks sharing their experiences with CIs

  144. Candy
    Dec 01, 2010 @ 22:00:46

    Dianrez..

    you said:

    “It is hard to get documentation because the factories are not reporting them unless it becomes a legal issue, which means we are not hearing about the minor problems or non-life-threatening failures that do not affect health to a great extent. ”

    So, you’re interested in minor problems? non-life-threatening failures? Why? Why does it matter to you? You’re not planning to get an implant. These things, I can find out because I know where and whom to go to. And, I do because I am interested. But you and others? What’s the purpose of your and other’s interest?

    I beleive these minimal occurences is just as common as it is with any other surgical devices because not everyone is alike and they share it because there are always certain things that people have questions about. I don’t see how this reflects the danger of CI.

    I don’t see anything yet. So, yea, I see all of it as hype.

    Got anything life threatening? If nothing at all, then it is all a hype.

  145. Candy
    Dec 01, 2010 @ 22:05:19

    The first video Patti provided a link to, the person looks well and healty. No major health issue. She has seizures which is NOT a result of CI. She need to have it removed so she can use MRI. I am not sure when she got implanted because there are CI which can be removed and put back in (the part under the skin), but…since she has health issues NOT related to CI, she need to remove it so she can have MRI’s.

    That is nothing. This has nothing to do with danger of CI. She looks healthy.

    I will go on to the next video later tonight when I have time.

  146. Candy
    Dec 01, 2010 @ 22:29:31

    The second and third video is by the same person: Emele That is already clear, her seizures has nothing to do with CI.

    Fourth video is by Seek Geo. He never had CI. What does that have to do with dangers of CI? He has every right to decide not to go for it. I don’t understand what you’re trying to say here Patti.

    The fifth video is interesting. I have questions for her. She said she got implanted in 1988 and she was 16. If anyone has followed Rachel Chaikof’s story, one would know that Rachel was implanted around the age of 2 and she was one of the first among the 200 kids who were implanted in 1989. So, there are questions that need to be asked. She does not seem to be benefiting from CI and she looks healthy. Her life wasn’t threatened. Again, to better present YOUR argument,I woudn’t go that far back. Really. 1988 is a long time ago and CI have gotten so much better since then.

    The sixth video seem to have been removed by the user. Wow.

    On Cochlear Implant Online…there is a link for Rachel’s cochlear implant failure.

    http://cochlearimplantonline.com/site/?page_id=652

    Even Rachel wasn’t about to hide things. These things CAN and do happen. She was willing to share her story.

    Secrecy? I think it’s all hype.

  147. Candy
    Dec 01, 2010 @ 22:43:54

    Here you will find experiences about CI failures.

    It does happens but not too often. So, in general, CI are safe for the most part.

    http://deafness.about.com/cs/cochlearfeatures/a/reimplantation.htm

    There’s no secret about failures.

    Google “cochlear implant failures” and you’ll see some abstracts and some information. Do stay away from these scum lawyers site, they’re just out to make a buck. These lawyer sites are very common, just as common as spotting ambulance laywers in the ER.

    No secrecy.

    Unless I see something credible, I think I’m done here.

  148. Larry H
    Dec 01, 2010 @ 23:30:26

    UNK COCHLEAR IMPLANT NONE

    Event Type Injury Patient Outcome Required Intervention;
    Event Description

    Cochlear implant is dangerous to deaf children and needs to be taken off the market. FDA have no deaf workers and therefore lack the understanding to protect deaf children. According to research cochlear implant cause communication confusion, disorderly conduct, risk of brain damage which can kill. Yes, I have a deaf granddaughter, who is so special. My mother’s uncle and brother are deaf, but they are condemning the deaf culture. I am the only one who is excited, and they can put me in jail for the American Sign Language. So MD needs to stop cochlear implant and leave my granddaughter alone. Yes, I will need for FDA to suspend all cochlear implant immediately till further notice. Do you know that cochlear implants have killed total of , maybe more and 50 or 100 cannot play sports, isolated at home not able to play sports? that means they are not a success. American sign language help deaf children to increase in higher intelligence. Md’s are making money from these implants for their fancy homes and drive BMW’s. Back in the 1800’s, ASL was thrown out for more than 150 years till 1950’s. Cochlear implant is not with wealth the trial. Cochlear implant is for people who could once hear that is it. It is not for deaf children.

    http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfmaude/detail.cfm?mdrfoi__id=899875

  149. John S.
    Dec 02, 2010 @ 00:38:18

    Candy, CI failures are not hype. Especially when they are admitted by the inventor. The failures get rationalized as something “OTHER THAN” the CI. So when the companies admit to the failures then this includes not only that which they admit to but includes that to which they attribute the failure to something else. This is pure rationalization. When event “B” directly follows event “A” (with confounding factors controlled for) the nature of the cause-effect relationship between “A” and “B” is rather obvious.

  150. Candy
    Dec 02, 2010 @ 01:22:09

    John S

    The hype I am referring to is all the claims about how CI are very dangerous to a person’s health and that these things are kept secret from the public. In this comment section, there are repeat mentions of injuries and deaths related to CI that is being kept secret. What they claim are “secrets”, I have seen nothing except what is known which I have mentioned above. These claims are, to me, all hype. I hope this clarifies. I am not saying the failures are hype.

  151. Candy
    Dec 02, 2010 @ 01:35:34

    OMG

    Larry H, do you realize that anyone can type in a report and some unknown did that back in 2007. I consider this an abuse, submitting a report that has nothing to do with adverse event of CI. This is not even valid at all. This adverse event report is for people who have experienced adverse reaction to a product. Here you are showing me a report submitted by someone who does not even have a CI but submitted that report because of his/her opposition of CI. What a joke. Larry H, you need to do better that. Obviously you don’t have anything to make your case.

    I guess the question here is, why are people like Larry H doing this sending me something that is irrelevant? Why do people do people submit an adverse event report to opine how they feel about CI, and not only that..but also state statistical information without any cites to support that claim? Let’s get real.

  152. Candy
    Dec 02, 2010 @ 01:43:06

    This is a valid adverse event report:

    http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfmaude/detail.cfm?mdrfoi__id=1885396

    And, in that case there was an infection. Twit happens. I mean, I do expect to see things that can happen as a risk factor for surgery as with any surgery and infection is one of them. So, that site, you’ll find many adverse event report related to cochlear implants. So, as I have said, it’s not secret. It’s out there.

    I’m done. I think I really am wasting my time here. And, I believe I have made my point.

    Ta da

  153. patti
    Dec 02, 2010 @ 01:44:40

    re: the video links – i didnt say they were about horrific failures – i said i got them from a friend and they r of folks sharing their experiences with CIs

    every voice counts – no?

    re: hype – oh there is hype on both ends of the rhetoric rainbow aint there?

    kinda like ASL Mafia ; )

    nah – i aint looking for the exaggerated or the overrated or the hyper-sensationalized

    im looking for the truths and the facts

    and there is plenty out there that we still have to uncover and find out about

    and we gotta listen and see

    Larry – re: the “complaint” u lifted –
    the playing of sports – i know several young people who were told they can not play foot ball and even one had to stop running because she got dizzy and they said it was a result of the internal device shifting a bit while she ran and jumped hurdles so she had to stop her passion

    these are first hand accounts i have personally witnessed

    i also know of many folks who say they can do anything except for skydiving and scuba diving (air pressure thingy)

    i do know things have gotten better but are still not perfect – that some folks experience:
    injuries
    complications
    failures
    dissatisfaction
    lack of success

    i do know that Dr Pisoni in his AG Bell conference keynote address said that the FDA needs to push for measuring effectiveness and not efficacy (does the CI turn on and register sounds)

    want all the answers

    and yep i know larry has some declarative statements in the “complaint item he shared” that are opinion based but since i allowed up ur many many many comments that are opinion based im gonna let up his and trust folks to use their discretion

    just as u have the right to declare the wrong thing (ie ur falsehood that ASL is bad English and ASL is not a language based on your personal observations and no research or facts) Larry has the right to declare his opinions or share a complaint he found cuz they clearly are opinions

    CI failures are serous i agree

    like horton said “a persons a person no matter how small”

    be a who in whoville and give a mighty yelp – we want facts and nothing but the facts so folks can make fully informed decisions because if they happen to be in that percentile of errors it is significant and because we care

    again – i aint calling for a moratorium on CIs but i do know plenty of folks who feel their should be one until all the facts are out there and i think it is within their right to call for one

    i also know that i have turned a blinds eye on some of the significant issues revolving around CIs because i did not want to hurt, offend, or confuse parents or folks with CIs and that was wrong of me

    presently i just aim to see how much true truths we can get out on the table so we fully see and hear what has been going on from beginning to present cuz it is all important and it helps us to determine where we are going

    we should all want these answers

    if we truly want to scream about hype – then u best be willing to examine how CIs are marketed and sold

    hype: “publicize in an exaggerated and often misleading manner”

    hype ain’t hip

    re: ta da – i believe if it is meant to be a bye bye it is ta ta

    if it meant to be “ta da” as in “there ive proved it” im thinking nah not yet

    and re: secrets – well what do u think about the Cochlear Americas case where a WHISTLE BLOWER had to help the Dept of Justice bust them for kick backs and jacking up the price of CIs????

    and what about how the Sovona press release was kinda vague but the release to the recipients and parents illuminated a much more serious nature of the hot failures

    even the Hearing Blog seemed to sense some shady stuff there

    peace

    patti

  154. Candy
    Dec 02, 2010 @ 02:19:46

    Two things here..

    The money thing, which I think is pretty typical of many big corporations. So, that’s something you seem to be big on. Fine. Not getting into it.

    But, as far as painting a picture that cochlear implants are very dangerous, that..I’m willing to prove that it isn’t.

    You said in response to Diane lowry in the email subscription, I don’t see it here. Did you retract it?:

    “many folks have ended up being semi-literate in ASL and English and that is the dangers of a 2nd wave of Oralism”

    I’ll be honest with you, I have seen many people whom are from CID and St. Joseph’s in St. Louis who’s English is way better than many whom went to a residential school for the deaf. Are you blaming semi-literate in ASL and English on oralism? If so, you are misled big time. Seriously.

    There are many kids in mainstream in the Chicago area who’s English is awesome. They all sign very well too, wheter it is ASL, PSE or Sim-com. Many are very involved in the deaf culture within that city.

    So, if you blame that on oralism, can you state how you have come to that conclusion? Provide cites if you can.

    Patti, Larry H did not provide any truth about playing sports. He provided no links or cites to that effect. You obviously did not check out that link because if you did, you will see that there’s nothing there that is valid. Do check it out.

    You want truth? Go to that link Larry H provided. Click on search (to search other adverse event). Click on simple search, type in Cochlear Implants and pick a year, there are plenty of adverse events listed. There is your truth which was out there all this time, you just didn’t know about it. There’s no “secret”. And, because I suspect you did not check out Larry H’s link, I have concluded that I really am wasting my time.

    For me, Ta da means see ya later…

    😉

  155. John S.
    Dec 02, 2010 @ 02:24:18

    Candy, that is two separate statements – 1. claims about CIs being dangerous, and 2. things being kept secret from the public. Should someone research the first issue they will find ample evidence of the danger of CIs. Both the *physical* danger (much of which is unknown in that what we know about the human body is less than what we actually factually know), and the *emotional/psychological* danger is that the Deaf human being is now seen as a “DISABLED” Deaf human being. This carries an emotional cost to the person who has not looked upon themself as *disabled* – until they are told this. If they are NOT told this by parents and/or society then they will NOT believe this.

    Issue #2, I find hard to believe that things are being kept secret from the public. There are many orgqanizations that seek the facts and if they cannot get them directly with requesting them, they can get a court-order. Should anyone wish to they can spend time in a major university library and/or online to gather divergent information.

  156. handeyes
    Dec 02, 2010 @ 02:52:00

    heye ta da candy

    re: the funny $$ – u dont gotta get into it. i know u be selective. but to me its part of the big picture and one of those questions i gotta be asking and a friend enlightened me that the CI for her kid is about 8 X the cost of a pacemaker

    hmmmmm

    just noticing

    re: “as far as painting a picture that cochlear implants are very dangerous, that..I’m willing to prove that it isn’t.”

    im all eyes girl

    i got a bet that this will come down to values

    again – when we tango it almost always comes down to values dont it

    meaning that u will say – not so many deaths for meningitis as a result of the CI with spacers problem and i will say – did u read the link about the little girl who died from it

    she counts

    i care

    it was dangerous and it is one too many

    cuz it wasnt needed in the first place

    but…. i will still defend the parents right and the Deaf adults right to choose a CI – im just gonna hold the corporations responsible when they mess up

    oh yep i am as best i can – so that when they make those quiet out of court settlements so things dont go public someone has a wee measure of their moral compass saying hmmmm what about the other folks???

    re: the “2nd wave” comment – it is still up there. i aint touched it.

    well i based me statement on:
    babbidge report of 1965 – oralism is a dismal failure declaration – this was a congressional study and report by the way – not an informal study by me looking over at a bunch of kids from here and there and it was a study after oralism had been the law of the land for half a century in the US of A

    COED 1988 another congressional report that basically said that TC failed and mainstream was leaving kids drowning

    this is where u say but that was before CIs

    ah – yes i have seen the sound and the fury part II no worries there girl

    i do know the thing works for some just as i do know some folks got the knack for being oral and some DONT

    im talking about the DONTS – care about them too i do

    i also know that many of the “successes” regret not having signing at a young age

    so my opposition has been with any system that says – a Deaf child can NOT do what comes naturally – uses their eyes and their hands

    that is my objection when it is banned

    i also object to any system that says a Deaf child can not learn to speak or use their Hearing

    yep i think if i kid wants to and has the aptitude for it – let them

    just dont exclude the other from their lives

    oh my gosh candy – for goodness sakes – smile – im just trying to imitate ur tone here

    i do knw that he provided no FACTS or PROOF and i even said i see that he didnt provide any facts or proofs but i was ALLOWING it cuz i ALLOWED u to say that ASL is not a Language

    remember that????

    and i also said that i know first hand of some folks with CIs who have been told they can not play sports but i also know of some folks who have been told they can

    that is a fact

    i also know that they are not sitting at home in the dark pining away but neither are the Deaf ASL folks (despite what the AG Bell letter to Pepsi tried to convey)

    so yep that is why i talked about the hype in both directions

    re:suspect – u may suspect all u want

    my thingy about the truths being out there refers Dr. Pisoni’s concerns, refers to how often things dont get reported, refers to how these adverse events are not reaching the general public, refers to how things get deep sixed within the industry, refers to …

    lots of stuff

    re: ur conclusion – r u saying u have run out of ur hot air?

    if yes – that’s ok – maybe u will get a 2nd wind?

    Candy – i believe if u listen carefully – u will see we r probably more in agreement than in disagreement but sometimes u seem determined to “disagree to agree”

    for example – i do not like hype either, nor hypocrisy, nor hysteria

    i do not circulate images of a baby that appears to me to have NOTHING to do with CIs or brain stem implants and until proven that it does – i will challenge and question when it crosses my path

    i do not support folks spreading myths or dissing anyone with a CI or parents who have chosen CIs

    by the way – just found this on Advanced Bionics website:
    “The Harmony™ HiResolution™ Bionic Ear System (Harmony) is the most reliable, best performing cochlear implant system in the world.”1-3 (cites some studies at the bottom of the page)

    guess they are not factoring in the recalls?

    peace – ala martin’s peace (not the absence of tension but the presence of justice)

    patti

  157. Dianrez
    Dec 02, 2010 @ 02:53:30

    Candy is certainly entitled to her view, and there are MANY who will also defend the CI just as we question it. This won’t be settled here nor for a long time. Plus, Candy is studying the CI for herself. She may not be seeing the same things as others do.

    What might be more productive discussing is WHY people put such value on hearing, other than it being a useful sense.

    Is the attraction of the CI tied into this valuation of hearing? How much are the CI industries playing to this?

    How honestly are they “meeting the need” as opposed to “making a business decision”? How EFFECTIVELY are they doing this, apart from the bottom line?

    So much of the arguing that is going on is due to failure to separate the issues or to dig deep enough into exactly WHAT are we arguing about.

  158. Larry H
    Dec 02, 2010 @ 03:13:35

    Reverse Planet explores the discriminations which occur between the two worlds of “hearing culture” and “deaf culture”. Taking place in the future, roles are reversed as well as experiences. The deaf become more privileged socially, medically, educationally, and economically as members of the majority population. this experience is designed to provide the hearing viewer with an understanding of what it is like to be silent, misunderstood, and oppressed.

    http://reverseplanet.blogspot.com/2007/09/video.html

  159. Candy
    Dec 02, 2010 @ 03:25:53

    Your tone is fine.

    😉

    I think you need to stick to relevant stuffs that’s all.

    Did you check out the link Larry H provide? I would suggest you do your own search there. Look elsewhere online too, you’ll see that there are a lot of information which indicates things are not being kept a secret.

    I’m getting from you: One is too many. Well, hey, it ain’t a perfect world. You know it. It’s easy to turn in a perfect assignment, but when it comes to manufacturing things, there’s always lemons.

    I wonder how you feel when you pass many students at NTID with a CI? What goes through your mind? Do you ask them questions?

    Just curious.

  160. handeyes
    Dec 02, 2010 @ 03:40:15

    john s

    ah u speak deeply there pal

    re: #2 – not everything is within court records or covered by FOIA right? There are some exceptions eh (at least that is what i see at the bottom of the FDA MAUDE thingy

    furthermore the reporting is for dire medical stuff and not the quasi stuff eh? or the stuff that may or may not be causal or spurious or correlative cuz it hasnt been studied yet

    also things that we think are safe now later turn out not to be – asbestos, nicotine, BPA etc etc

    hence Dr. Pisoni’s call for not just studying if the CIs cause any physical problems and does it turn on and off but how effective is it

    hence some folks looking into does it actually contribute to language DELAY in some kids instead of language gain like it does for others

    harder to prove than whether or not the wound heals up or whether or not the child is getting intermittent shocks

    i do not want folks to go hysterical over it and think CIs = bad

    just as i do not want folks to say hearing = bad

    or Deaf = bad or Deafhood = bad or ASL = bad English

    that aint cool

    nothing is ever always anything

    but i do want us to know the facts and i do want the folks who have had CIs fail on them to know that they themselves are NOT failures

    and i do want the parents to know that they are NOT failures

    and i do want the parents who have decided not to do CIs that they are not failures and their kids are not failures

    i do want folks to know it is ok to be Deaf and it is ok to have CIs

    and it is OKAY and an OBLIGATION to ask questions

    so this may be the real sense of the shroud of secrecy we are combating – this metaphorical gag order that has been placed on the Deaf community – this taboo subject (in addition to some of the stuff within corporations and the health “care” industry that we know is not kosher but happens)

    this taboo of:
    “u can not inquire about CIs because if and when u do – it tells us u r rejecting folks who have CIs”

    and that is a falsehood – i do not and will not reject folks with CIs (candy i do not go up to folks with CIs and ask them about them but many many many students and adults spontaneously share many and not just at NTID but out and about – signers and non-signers)

    we need to be able to put our questions and our known truths and facts on the table and come from love and discuss them openly and honestly

    having folks jump up and down on either end to chant:

    CIs are W O N D E R F U L – says the girl with the flowing hair running through the meadow of flowers

    CIs are E V I L – signs the Deaf man with fake blood running down the dolls ears as he runs up the steps of Volta Bureau

    no thanks

    seen the film – it don’t end well

    what we need to do is put it all out there and seek and find and most likely we will see:
    1. it aint as rosey as they paint it
    2. it aint as bad as they paint it

    it is somewhere in the middle and that is what we need to know and see

    we also got to CARE about those folks who got theirs 10 years ago and 15 years ago cuz it is still in their bodies and to say that is not important or relevant or current is NOT NOT NOT NOT respectful

    it is important relevant and current to them and thus it is to me and u too

    they are our brothers and our sisters and i care

    i also care about how the CIs are really causing deep rifts within families

    deep

    not cool

    (we havent even touched on how some folks have told me – first hand accounts here and i am NOT making this up – i do not lie – have told me how they even considered suicide as a youth because they felt so pressured to get CIs – i have not stated this before because it is a VERY strong truth and i dont want any one to grab it and run with it for abusive reasons but it is a truth and it has been VERY much on my mind since so many of the gay / lesbian / bisexual / transgender youth suicides were made more public recently) this is a truth that has been too painful for me to speak of but when more overt truths are public and i see folks try to minimize them as if they are not merit-able because they are a small number – it pains me because im like – well how r u gonna see the deeper stuff if u be paddling so hard down the river called de nile

    when i ask folks why dont u share ur stories – they say cuz it will hurt my parents

    i have seen this

    i have even seen this from 40 + year old Deaf adults

    im learning sign language but my mothers doesnt know
    i dont go home for holidays – i tell them im too busy with work simply because i dont want the communication hassle (this from an oral signing Deaf many with CIs)

    and for those who do be brave and be strong and sing their truths – what are they greeted with sometimes?

    well u dont look like ur really suffering
    well my CI can come out easily so i can do the MRI thing
    well i doubt ur headaches are from ur CIs and sorry they cant do any testing on u cuz u have the old model and cant get it out
    well u r just angry and bitter cuz u didnt work hard enough with ur CIs

    theres more – theres more

    i have witnessed more and i dont even ask to know

    it just gets plopped in me lap often

    and still i will acknowledge that some folks love their CIs and i want to ensure that it is safe (all around safe)

    walk me pup the beddy pie so will be approving comments tmw

    sorry that feature is on – will think about disabling it tmw

    peace

    patti

  161. Karen Mayes
    Dec 02, 2010 @ 11:57:08

    Okay.

    I will leave a comment detailing my experiences with my son’s CI.

    I have to be honest that it has been a very positive experience for both of us… my son and me. Yes, making the decision has certain ups and downs, but we are glad we made it. My son is happy with it.

    My question is the cost of CIs. I knew it had a HUGE price tag. I was shocked when I got the hospital bill… everything, including the surgery, recovery, etc… cost $87K. Out of $87K, only $11K was for hospital (surgery, medication, room, etc.) That left the CI product… $76K. Wow. But for my son, it was worth it.

    Both of us KNOW that CI will wear out over time, just like computers and other machines… my son KNOWS that he’d need upgrade, replacement, etc., once it happens. We have discussed it. The audiologists WARNED us about it. They also outlined the complications of CI surgery and afterwards, side effects, etc. They did not keep anything from us. They did warn us not to expect a lot. Might not work. Might work. Etc. No pressure from them to force us to make the decision. One thing that took us by surprise was that half of people receiving CIs found listening to music not pleasant (luckily, my son ended up loving music more.)

    Anyway, what bothers me is the prices. Out of curiosity, I checked the heart pacemakers out. Saw that the pacemakers were cheaper than CIs. Hm, you could Google the prices of pacemakers… ranging from $1K to $30K… depending on the companies making this kind of products. Guess it has become common so the prices of pacemakers are not that high? I also checked the history of pacemaker recalls… yes, there is one.

    http://lawsuits.lawinfo.com/Guidant/index.html

    I don’t know if there are more recalls for the pacemakers, I have not checked more. But it’s a good comparison, since pacemakers surgeries are more risky than CI surgeries and yet cheaper than CIs.

    Ahhh… I believe it’s the attitude that is affecting our views of CIs. So, the word “CI” is emotionally provocative. My big question is the cost of CI. I don’t know where $$ goes and I have not investigated this. Gene therapy is in the future, and stem cell therapy as well… genetic birth defects (deafness is considered one of them) screening is on the horizon, what would it mean for us?

    Sorry for a long winded comment… just musing.

  162. Karen Mayes
    Dec 02, 2010 @ 12:28:48

    Oh by the way… our health insurance covered most of it… we only paid around $2K.

  163. handeyes
    Dec 02, 2010 @ 13:07:35

    Dianrez –

    as always thanks for ur comment

    deep, deep, deep – we gotta dig deeper with love

    yep

    re: valuation of H earing – yep that is a big huge part of the development, marketing, and movement – or shall i say revolution – yes there is an article in the volta review reviewing Oral Deaf History and the concluding section is entitled The Cochlear Implant Revolution

    (and they call us radical and fanatical – and dont be thinking im all anti- AG Bell Assoc cuz i aint – i just want them to do right and not be advocating for oral / aural only via AVT and their AG bell academy and i dont want them to be complicit by having circle alliance founding partners (Cochlear Americas and Advanced Bionics) and not know that both of them got fined a plenty by the US Dept of Justice and on behalf of the FDA

    yes the CEO Alexander Graham told me he was not aware of those suits and no i have not called him to ask what he thinks of the latest recall and hot failures of Advanced Bionics HiRes 90K and why they dont have anything up on AG Bell website about the recall

    i will challenge AG Bell association but i wont demonize them

    i understand the $100,000 from Advanced Bionics to be AG Bell Circle Alliance Partner probably comes in mighty handy for AG Bell Assoc but if folks r gonna challenge me about neutrality and bias before we even start having a conversation – ya might wanna follow the $$$$

    and it dont lead to my place – it does lead directly to Volta Place

    now i aint saying there is a huge ugly conspiracy the likes of Watergate or Ford Pinto or the Cigarette industry or Haliburton

    but i am saying there is some MIGHTY questionable conduct going on

    mighty way up up up – can u look all the way up at the top of that ole fortress and read those Roman numerals up?

    yep look up and ask hard questions with a loving heart

    and even AG Bell association at A L L bad and evil – i like to think they r just misguided and havent joined the 21st century in terms of knowing:
    1. biodiversity is a must
    2. language diversity is a must
    3. lingucism is not cool
    4. audism (or we shall say oppression for the folks who have an aversion to the a word or can not spell it correctly to save their life) is not cool

    the minute AG Bell association retracts the offensive Pepsi letter, officially and publicly removes the ban on signing and lip reading in AVT guideline #3 and signs on to the ICED 2010 Vancouver New Era Deal (yep it is being circulated and signed by various organizations) and does not have circle alliance partners who have been fined for faulty CIs and unethical dealings

    then u will see me do a mighty happy dance and tell them how much i love them

    and i do love them

    i would sit down with Alexander T. Graham again and chat

    he seemed workable to me but a bit misguided and ignorant and i dont say this to be insulting to the bloke but he did himself attest to his own newness to the post and the field and too why it might be important to have a Deaf CEO of AG Bell association and that he had no idea of what his circle alliance partners had been up to lately

    this is very odd considering he is an expert in competitive intelligence but heye i am a believing and trusting and open gal so im gonna cling to ignorance over arrogance until he starts showing his more true colors

    oh wait a minute – i forgot i so so so forgot – they did show their true colors when they issued a press release while we were still having our peaceful rally in front of their place in which the AG Bell association denounced the exercising of the 1st amendment – free speech and free assembly

    oy!

    i forgot

    hmmm

    so maybe it is arrogance

    or maybe it is audism – the belief that to hear and speak is superior to being Deaf

    which is pretty much what the volta bureau is founded on

    hmmmm

    and should we look into where that original $$ for the volta bureau and AG Bell Association came from???? u know A G bell and the Telephone Gambit (see seth shulman’s highly acclaimed factual book)

    and should we look into the aims and goals and actions of AG Bell Association since its founding????

    oh dear i dont want to go there but some day i may have to

    why?

    cuz Catherine Murphy (the communication director at AG Bell Association who just got hired to be the PR gal for Gallaudet hmmmm interesting) said “i think you need to study history more because you dont seem to know about what AG Bell did”

    something to this effect

    im sorry i cant lift a direct quote but AG Bell Association banned (geez they r good at banning aint they) Audism Free America AFA reps from having any type of recording of the historic meeting – no video, not transcription nope but low and behold when we walked into the room there was CART (computer assisted real time transcription) for the 2 AG Bell Assoc Deaf members at large

    we immediately asked – can we have a copy of that to which Catherine Murphy (Hi Catherine – i know u read this stuff and congrats on the new post – is this a dual type of appointment thingy AG Bell and Gally simultaneously or r u leaving AG Bell association – just curious. Ya know i like questions and answers) to which Catherine said when asked – can we get a copy of the transcript also – “ill take that under consideration”

    and after the meeting which in hindsight we should have refused to say anything until they gave us a written assurance that either we would also get a copy of the transcript or that they will ensure that the CART record was destroyed and no one got it – not them or us – fair is fair but instead we went forward on good faith that they would give us a copy

    yes i am CONSTANTLY exercising good faith only to be a disappointed Deaf dame

    oh well some day me will learn to be completely jaded but for now ill keep hoping

    NOTE: the transcript is a historic document and does belong to the community. AFA has received no confirmation as to whether or not the transcript was destroyed and there is not record of it left. Have no idea why they wouldnt share it in the interest of transparency and all that. They wouldn’t say. Odd eh?

    so yes dianrez – oh pls pls pls do do do start asking those deep and probing questions

    if u do anything over at ur place – can u post a link here to direct folks there??

    and THANK U

    peace

    p

  164. handeyes
    Dec 02, 2010 @ 13:43:01

    Karen

    thank you for all you shared

    it is VERY VERY VERY important and i think also it is very brave because I know that parents that have chosen CIs for their kids do get beaten up a bit in the blogsphere – especially Deaf parents

    So i thank u very much for sharing your family’s story

    it is VERY important

    i am totally glad that ur son is happy with the CIs and no complications

    that is VERY important to me

    I also really appreciate the questions u r asking

    They are very important

    it is also very good to learn that u got full and just information from the audiologist

    while i have seen doctors and audiologists push certain things i have also seen doctors and audiologists not push but rather recommend and lay things on the table for folks to see and decide and we should sing their praise as well as reveal the bad and ugly too

    ive had really good doctors and really bad doctors cross my path and i have had really good audiologists cross my path and really bad ones i have had really good speech pathologists and really bad speech pathologists cross my path also

    one thing that NEVER crossed my path though during my upbringing via any professional was ASL

    it wasnt banned – it just wasnt available to deemed necessary

    i had to go find it in a library book

    yep

    seek and ye shall find

    the thing i notice about Deaf parents who have Deaf children who get CIs – most of them make that decision later in the child’s life and they make that decision:
    1. after the child has a fully natural and accessible language ASL and they have acquired English
    2. they add the CI purely as an accessory and not as a salvation
    3. they dont go into it with a missionary zealousness
    4. they do not reject their child being Deaf nor does the child reject her/himself as being Deaf

    The have a language, cultural and identity foundation – solid

    so this is why (i think) Tove Skuttnab-Kangas has said CIs in and of themselves are not a tool of cultural and linguistic genocide but CIs coupled with AVT and pure oralism is

    many Deaf parents and many Hearing parents ARE ARE ARE ARE giving their children ASL and CIs

    i think when we polarize – stretch and distort things to be black and white and binary – this or that we get bonky

    it is also important to note that even the Deaf kids raised with CIs that do not have any exposure to ASL or any sign system – many of them still see themselves as Deaf and they should NEVER be told they are not DEAF

    now some of them will prefer to call themselves Hearing Impaired or a CI person (yes i am seeing this term emerge now) but by and large the folks i see with CIs still see themselves as Deaf people

    now Deaf culture folks might argue otherwise and i if they do i would say the distinction is Deaf ASL person vs Deaf person

    and Deafhood says – both both both are part of the Deaf-world

    some may choose to stand outside of it and remain fully in the Hearing-world with no contact with the Deaf world but no Deaf person can stand outside of the Hearing world fully – it is the nature of being a minority

    the majority can live its whole life without any contact with a “different” person and even the minority person can live their whole life without any contact with a person like themselves but a Deaf person (ASL or not) can not live their whole life without any contact with someone from the majority culture

    i have seen some Deaf folks talk of nationalism – similar to the Marcus Gravey ideal of a Black nation – this was doable but never manifested

    for Deaf folks this is much more difficult to manifest due to the frequency of Hearing offsprings but it is possible to have an ASL ashram or kibbutz or a town

    there are merits to it – many many many groups set up physical spaces to be and to congregate

    i would just want to make sure its a space that is loving – welcoming to folks who share those values, languages, norms of behaviors, traditions and possessions etc

    the trickest thing with CIs is:
    1. there are some hard questions about them that we havent been allowed to ask or get answers to
    2. when CIs are coupled with pure AVT mandated lifestyle for a child – most scholars agree this is unethical and we have a moral obligation to be doing shout outs against that practice with love
    3. while some folks who get them are REJECTED by others (that aint cool), folks who dont have them may feel the getting of them is a REJECTION of Deaf culture
    (values conflict)
    4. they can seem to lead to a bad case of “cake and eat it too”

    item 4 deserves a lengthy discussion so if someone wants to tackle that GREAT – its a thorny one but an important one

    again karen – i totally thank u for your good courage and ur good heart

    peace

    patti

  165. handeyes
    Dec 02, 2010 @ 13:52:13

    Larry H

    thank u for ur comment and the link to that video

    its a good one – re: trying to show role reversals etc

    kinda like the Eyeth folklore

    once i saw a short Deaf-world kinda video in which Deaf was the majority and they showed folks going for pre-implantation screening results – Deaf Dr Deaf couple and the invitro embroyo was determined to be Hearing and thus the Dr smacked the test tube and broke it

    it was a role reversal type of thing to dramatically show what the UK Human Fertilization and Embryo bill was all about – see the stop eugenics campaign for more info (note the UK HFEB passed and ruled that if a pre-implantation embryo was determined to be Deaf – it could not be used for implantation)

    media is mighty powerful for communicating complex issues in condensed form

    the most most most important thing for any disenfranchised group to be mindful of is that in the process of trying to educate and emancipate we do not become oppressors ourselves

    that is very very very important

    it does not always pan out to be that way

    examples a plenty –

    white women suffragist advocating for the right to vote before the Black man because they felt they were too ignorant and illiterate

    Jewish slave owners having their slaves serve them during a Passover seder

    these are cases of where some folks once they get a wee measure of privilege or are coming close to some might turn around and oppress their more oppressed brethren

    sometimes folks with CIs or more h earing or speech will use and abuse it over Deaf ASL folks – not cool

    sometimes folks with more ASL skills and Big D ness will use and abuse it over Deaf oral folks – not cool

    but by and large (compared to other minority folks who are all fighting for a wee bit of something) we r pretty dang civil (yes i know it can get might nasty, irksome, and ole but i have studied and seen far worse)

    MLK jr said “injustice anywhere is a threat to justice everywhere”

    no matter how small or large

    oh and re: karen’s point on genetic therapy – oh goodness that is the new frontier yep and what does it mean for us as a people – huge questions

    important questions and unfathomable to me that it is even up for debate – a question of whether or not someone has a right to live – YIKES – War Against the Weak meet the 21st century – yee haw

    peace

    patti

  166. handeyes
    Dec 02, 2010 @ 14:10:35

    last note for me today until much later but we havent really discussed the issue of consent neither and that is real important

    i just finished the book The Immortal Life of Henrietta Lack by Rebecca Skhoot

    awesome awesome awesome book

    all true

    facts – wow facts wrapped around human stories and some inhumane underpinnings

    and complexities

    complexities and open for questions conundrums

    really important stuff re: medical ethics and consent and more

    and …. several of the folks are Deaf – non-signing, non-really knowing what it fully means besides just having to say WHAT alot and living more amongst self than others in their midst but had an impact on their lives definitely and also the question – geez if my sister had learned some sign language….

    hard questions

    forever to remain unanswered

    heartbreaking stuff really – examining racism, sexism, audism, classism etc

    but just skip that line if u dont care for the detailed naming of “-isms” and know it is basically a true story about medical science and the oppression of the folks who contribute to it

    and it is a must read

    saw the author speak at RIT – she is one of my latest heros

    skloot – she is a gem of a human and im glad she is out there writing, researching(“Research is formalized curiosity. It is poking and prying with a purpose.” Zora Neale Hurston), questioning, caring and loving

    and to all – im sorry im so long winded this morning but dang u all got me thinking a plenty – stop that would ya ; )

    peace

    p

  167. Candy
    Dec 02, 2010 @ 15:09:29

    Like you, Patti, I once thought that that maybe it might be possible for AVT and ASL to work together. That is, until I realized I made an ass out of myself for not really understanding AVT. There is NO way you can use AVT and ASL together. No way. No how. It might be possible tho if the child already knew ASL prior to implantation, but during AVT there is no way ASL can be incorporated. This is not even debatable.

    AVT is nothing like the speech therapy most of us have experienced.

    Having said that, I will not attempt to explain why to you. I figured, in order for you to understand, you will need to seek out that information on your own.

    So, how many stories like Karen’s will it take before you decide you’re satisfied with the questions that are in your head?

    Just curious.

    FYI, it was the many stories I have heard like Karen’s son that makde me look at CI differently. These were firsthand accounts compared to some of the crazy hype I hear from deaf people themselves who have never had a CI.

    Good day…

    Karen..

    It’s like how some PX are, the newer they are the more expensive they are. Like car parts too, newer car parts are more expensive than the ones that have been around for a while. I think CI price will come down later.

  168. Jean Boutcher
    Dec 02, 2010 @ 15:27:45

    Candy,

    Not like now, cochlear implant was the hottest topic at the NAD in the late 1980s. What I know for a fact is that, prior to developing a position paper, the NAD consulted the FDA for details, including warnings on cochlear implant. It was in 1991 when the NAD issued the position paper and distrubuted copies of it to hospitals and clinics. The purport of the position paper was to have all CI doctors READ to both the CI candidates and their parents. As of the turn of the 21st century, the NAD “softened” and told an interviewer of Gallaudet Today (Fall 2000) that one of its Board members was implanted (!) two years earlier and that his wife was implanted (!) a year later. At the writing, I do not know if CI doctors still comply with the famous 1991 position paper of the NAD. Or if the NAD has made some changes in the position paper following the Board member’s cochlear implantion, for that matter.

  169. Jean Boutcher
    Dec 02, 2010 @ 16:47:59

    Karen,

    What an intereting journey you and your son have had following the cochlear implantion. Did the CI doctor read the NAD’s position paper to you and your son? Just curious. Once again, thank you for the informational and educational comment!

  170. Candy
    Dec 02, 2010 @ 17:35:05

    Jean..

    Yes, I have heard about NAD changing their position on CI at some point, but had no idea or didn’t take heed of that part where CI doctors were supposed to read the position statement to the parents/CI candidates. I’m curious, was that enforceable? If so, by what means? If it was just a position paper that was “recommended” that CI doctors read them, I don’t see how that is enforceable. NAD’s position does not make them an authority on CI. I find it interesting, neverthesless.

    I think what’s really important is that the CI surgeon make an effort to explain all the risks involved, no matter how small they are. All the pros and cons. When I met with a CI surgeon, I felt very comfortable with how he was forthcoming with every questions I had and he did not hestitate with the answers. Just in case you’re wondering, It is more likely I will go for it, am just taking my time (I procrastinate with a lot of things as it is). I intend to use a hearing aid in my better ear (saving it for stem cell or whatever) and implant my bad ear. I hope that I will enjoy music with that ear. I hope that it will even work for me, there are accounts of some people who recieved an implant and it just didn’t work, it’s not the implant itself. So, that is something I am aware of…it might not work at all for me. I’m willing to take that risk because there are days where I just put one hearing aid on instead of two. So, that is something I can live with should things don’t go right. In life, we weight things, we make decisions based on being informed. As a parent, I cannot imagine any responsible parents not doing the same. I believe most do ensure they are informed. Surgery is not something to take lightly, and I’m positive most parents are of the same mind when it comes to making decisions for their child.

  171. Karen Mayes
    Dec 02, 2010 @ 17:50:12

    Jean, no one read NAD’s position to us. Instead we discussed the nuts and bolts of CI brands, surgery, complications, side effects, therapies, etc… we did not discuss culture nor speech nor language because my son already had language, already having very good listening/speaking skills. You could say it was all medical/technical talk.

  172. Karen Mayes
    Dec 02, 2010 @ 18:55:59

  173. Larry H
    Dec 02, 2010 @ 20:13:08

    “At Increased Risk”

    Children with Cochlear Implants at Increased Risk for Bacterial Meningitis

    Injuryboard.com, July 30, 2003

    Children with a cochlear implant have a greater risk of developing pneumococcal (Streptococcus pneumoniae) meningitis compared to children in the general population, according to a study conducted by the Centers for Disease Control and Prevention (CDC), the US. Food and Drug Administration (FDA) and others published in the July 31 [2003] issue of The New England Journal of Medicine (NEJM). Additionally, children with a specific type of cochlear implant that had an extra piece called a “positioner” had 4.5 times the risk of developing meningitis compared to recipients of other cochlear-implant types. The manufacturer voluntarily recalled the device with the positioner last year.

    The CDC and FDA began investigating this possible link between the implants and meningitis in the summer of 2002 after receiving reports of bacterial meningitis among recipients of cochlear implants. As soon as the FDA became aware of a possible association between cochlear implants and bacterial meningitis, the agency issued a public-health Web notice and began working with manufacturers of cochlear implants to determine the nature and scope of the problem. As a result, the company that made the implant with the extra positioner voluntarily withdrew that product from the market.

    “This study is the result of excellent collaboration between the CDC, FDA and health departments of 36 states, Chicago, New York City and Washington, D.C,” said HHS Secretary Tommy G. Thompson. “The government quickly identified a health problem, took immediate steps to find the cause, and alerted individuals with cochlear implants and their physicians to measures they could take to protect against it.”

    The study authors note that individuals who are candidates for cochlear implants may have factors that increase their risk of meningitis compared to the general population even prior to being implanted with the device. However, the study was not designed to determine the risk due to these pre-existing factors.

    “These findings have important implications for children with cochlear implants,” said Dr. Julie Gerberding, CDC Director. “Most bacterial meningitis is vaccine-preventable so children who have a cochlear implant, or who will receive one, should have all recommended childhood vaccinations, including age-specific pneumococcal vaccinations for high-risk children.”

    “Working closely with CDC’s network for monitoring infection outbreaks is an important part of how we monitor the safety of medical products in use in the population,” said FDA Commissioner Dr. Mark. B. McClellan. “In this case, we identified a heightened risk of meningitis that demanded prompt action, and the FDA was able to take it.”

    Nearly 10,000 children and 13,000 adults in the United States with severe-to-profound hearing loss have a cochlear implant. The implant is an electronic device containing electrodes that are surgically inserted into the cochlea (inner ear) to activate nerve fibers and allow sound signals to be transmitted to the brain. It can help children with hearing loss perceive sounds and learn to speak.

    The study group involved 4,264 children who received a cochlear implant in the United States between January 1, 1997 and August 6, 2002, and who were younger than age 6 at the time of the implant.

    A total of 29 cases of bacterial meningitis were identified in 26 children (three children had two episodes of the illness). Fifteen children had meningitis caused by Streptococcus pneumoniae. Less than one case of the disease would be seen in a group this size, during the same time period, based on the rates in the general population.

    Nine of the 29 cases occurred within a month following the cochlear implant surgery, the remaining 20 occurred up to 36 months later.

    Originally posted (in a slightly different form) on Injuryboard.com, July 30, 2002.

  174. patti
    Dec 02, 2010 @ 23:14:37

    Candy

    wow you just keep adding statements that u have yet to prove:
    – ASL is bad English
    – ASL is not a language
    – Cochlear Implants are not dangerous
    – Gotta be AVT only

    while simultaneously hollering at folks if they dont back up claims with REAL STUDIES and not just their personal observations or experiences

    while simultaneously bringing links that really are not fact based or even at times related to what is being discussed

    but no matter i have been learning a great deal here

    Much indeed

    oh forgot to mention “the questions in my head” – first off thank u for caring about them. Karen’s son’s experience does give me peace of mind. but my questions for the other cases that i know of still remain – remember i care about everybody – including u. i feel confident that if and when u get ur CI it will all go fine and good. U clearly desire to be able to hear more and have a disdain for ASL and i want u to have what u want. hence i do not advocate to take away your right to get a CI

    at the same time i am not going to abandon the folks who came before u nor the ones who may come after who have less than rosy experiences nor would i abandon u if issues crop up many years later down the road

    a person’s a person no matter how small

    Peace

    Patti

  175. patti
    Dec 02, 2010 @ 23:18:52

    Jean

    here is the NAD 1991 position paper on CIs
    http://audismfreeamerica.blogspot.com/2009/06/nads-1991-position-statement-on.html

    here is the NAD 2000 position paper on CIs
    http://www.nad.org/issues/technology/assistive-listening/cochlear-implants

    i dont believe they have any newer one since then

    peace

    patti

  176. patti
    Dec 02, 2010 @ 23:19:40

    Karen

    many many thanks for sharing the links

    Peace

    Patti

  177. patti
    Dec 02, 2010 @ 23:21:47

    Larry H

    Thanks for putting up the info re: CI related meningitis cases

    We are amassing some very important links and info here folks

    many thanks

    peace

    patti

  178. Larry H
    Dec 02, 2010 @ 23:31:06

    @ Patti, Thank you so much and appreciated it.

  179. Karen Mayes
    Dec 02, 2010 @ 23:43:47

    Larry H.,

    Since 2002, people undergoing the CI surgeries are expected to get meningitis vaccination. My son did get one.

    http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5231a5.htm

  180. Karen Mayes
    Dec 02, 2010 @ 23:52:24

  181. Candy
    Dec 03, 2010 @ 01:06:32

    Patti..

    you are confusing things here. You have selective hearing or selective sight.

    – ASL is bad English – This is my observation and I said I will cover this in my future blog. You’ll just have to be patience.

    – ASL is not a language – it is a form of langage in which deaf people use to communicate just as much as PSE and SEE. Again, that is my opinion based on my observation which I will cover later…

    – Cochlear Implants are not dangerous – I have stated that from what I have seen, it is not dangerous. Meaning it is as safe as it can be. There are always exceptions and that applies to any surgeries and any devices that are implanted in man. You’re saying they’re dangerous, yet you have not really made your point. The burden of proof rest with you because you brought it up on this blog.

    – Gotta be AVT only – I didn’t say that. Re-read what I said above. There are recommendations to parents if they wanted their child’s CI to result in their child being able to speak and listen without relying on lipreading or gestures, then the parents are encourage to use AVT only. That’s the recommendation I have seen. Yet there are parents who incorporate ASL along with AVT, but definitely not at the same time. But what you are misunderstanding is that when I say there is NO way anyone can use AVT and ASL at the same time, there is truth to that. It’s impossible. Which of course makes me wonder whether you really understand what AVT is.

    Don’t be putting words in my mouth, girl.

    Why don’t you do some more research on your own instead of relying on your readers to submit links here because a lot of links here are irrelevant and doesn’t even make sense at all.

    Who cares if there is a video by a person who talks about thinking about getting a CI and changed his mind. That is not even relevant to your discussion at all.

    First, do me a favor. Find out what AVT is. Second, find out if ASL can be used within AVT.

    My major question to you now is: Do you know what AVT is?

    You have so many topics which you have covered here. You had originally talked about the safety of CI, that you have to provide links for.

    Then when getting into topic of ASL and Language, that my friend, isn’t absolute when it comes to facts. All of that is still debatable. Just because Harlan Lane says it is so, does not make it so.

    You can argue that CI’s safety is debatable, I’m not going to have a problem with that.

    I find your long winding comments complicated because you tend to touch on a lot of things at the same time. Granted a lot of people did go off topic so, it’s your blog. I know, sometimes I let it go off topic and sometimes I try to steer it back to the topic at hand on my blog. This here ain’t my blog. You’re in charge here.. Not me.

  182. Candy
    Dec 03, 2010 @ 01:11:28

    Meningitis isn’t an issue anymore so, I kind of wondered why that is so important to you Patti? Maybe you would do well to focus on the issues that are current that need to be looked at rather than on issues that have been resolved?

    Like maybe instead of going all over the place where it is MESSY which is what your blog looks like now, how about listing the concerns you have and work from that.

    What are the concerns you have about CI?

    Clearly meningitis is not an issue anymore…
    facial paralysis is not, according to my surgeon – you can debate that by providing me with links that shows it is still a concern. Burden of proof rests with you. 😉

    What else?

    List them. I think you’ll get somewhere better that way.

  183. Dianrez
    Dec 03, 2010 @ 02:01:40

    Candy, there have been research citations given on various points here and I believe you are choosing to overlook or dismiss them because they don’t fit with your conclusions.

    That’s okay, really, as there are no absolutes.

    You are in a phase where you are gathering evidence and anecdotes to support your decision to have the CI. This is not a time when you appreciate different viewpoints. That’s normal as you do not want to vacillate when the time comes.

    Interesting is the involvement of ASL–despite using it since childhood, you are now crusading to prove it is NOT a language and is poor English. I think you are laying the groundwork for a greater identification and hopefully a fuller integration with the Hearing community. That’s ok, too, just try not to burn bridges on the way.

    Maybe the questions being asked here will hit the right people and eventually result in a safer, more reliable product for you. I hope so for your sake. You’re valuing hearing an awful lot and the alternatives don’t look acceptable to you. You’re also hoping the CI will give you a better quality of life. All the best, and good luck. Chances are you’ll get it.

  184. Jean Boutcher
    Dec 03, 2010 @ 04:40:49

    Candy,

    “What else?”, you asked. Yay, I do have a question to ask you about CI. I have of late read in various printed matters that there is toxin in cell phone or mobile phone that is “danger to health” or “danger to the brain”. It just so happened to occur to mind if the same is with CI. Perhaps you would do the sleuthing on the Google or ask your doctor if there is any toxin caused by the chemicals of a magnet (in the head) and a metal microprocessor (behind the ear) would produce toxin.

  185. Larry H
    Dec 03, 2010 @ 05:21:46

    “The only good is knowledge and the only evil is ignorance” – Socrates

    While revisiting “Breaking the Code,” an educational video on Cued Speech produced by Jennifer Bien, I went through the recent comments on the YouTube page and realized just how much negative comments there were in comparison to the positive ones. I wasn’t surprised at the fact that there were negative comments, after all Cued Speech was created at Gallaudet University by Dr. Orin Cornett in the middle of a bastion of ASL Culture.

    What’s interesting though is the content of those negative comments. None of these comments indicate that Cued Speech has had a harmful impact on any of the commenter’s lives, yet all these comments are derogatory in that ignorance allows them to claim Cued Speech is not an “official language” or that it is an “oppressive method.” Another claim made was that Cued Speech and ASL “cannot exist in harmony.”

    I’ll just quote the most recent comment, made by Tar2006.

    “If I were Board of Education for that school. I will throw Cued Speech program out of the window in big time. I DEMAND put ASL in that program period! This is just disgusted me to see how much you abused their Deaf children’s education by using Cued Speech which is unofficial recognized as language. Someone please delete this video…”

    This comment reeks of ignorance and extreme prejudice. Unfortunately, this is a common theme that repeats throughout most of the negative comments posted over the course of the past year. Jennifer Bien, the producer and director of the video, responds to those comments in a polite manner, indicating that in the video an ASL interpreter is visible for those who prefer sign over captioning. Also, quite a number of the individuals in the video know ASL.

    I have observed a pattern in the negative comments. A large number of these comments seem to be ridden with grammatical errors, suggesting that those detractors could have had an arduous academic experience, harboring resentments against those who had a role in their education. On the other hand, they may have deep roots in the ASL culture and resent any thing that might seem to present a threat to their culture. Either way their comments reiterate the need to improve the literacy levels of deaf and hard of hearing children, which Cued Speech addresses specifically.

    Myths:

    1. “Gallaudet does not support Cued Speech.”

    Cued Speech classes are offered each semester, with the primary audience being speech language pathology students (HSL 690 Introduction to Cued Speech and HSL 712 Cued Speech Seminar). Dr. Carol LaSasso, a faculty member of the Hearing, Speech, and Language Sciences department, leads the research on Cued Speech with published articles in various journals related to deaf education. There is also a virtual library of bibliographies hosted by Gallaudet’s library with a link to the R. Orin Cornett Memorial Cued Speech Collection.

    2. “Cued Speech and ASL cannot exist in harmony.”

    At each board meeting for the National Cued Speech Association, both transliterators and interpreters are provided for the deaf board members. Quite a number of native cuers also know ASL. In fact, at the last board meeting three other deaf board members and I went out to eat at a nice Italian restaurant. We all switched between signing and cueing, often cueing a word that we didn’t know the sign for (or didn’t want to fingerspell). At Cue Camp New England, I saw a native cuer interpreting Cued American English into ASL for a child who did not know Cued Speech. Native cuers that also sign learned ASL in different ways. Some chose to go to Gallaudet or RIT, while others grew up in a large community of signers. The rest learned ASL either in the classroom or through later exposure in the community (like me).

    3. “Cued Speech is torture.”

    Where this came from, I do not know. Growing up, I don’t remember feeling tortured. Waterboarding is torture in my opinion, but that’s a debate for Congress to take up. Speech therapy can be troublesome for children who have therapists that focus on negative reinforcement instead of positive. Yet, Cued Speech is something to be learned for parents and something to be absorbed for young children. Torture is defined as “infliction of severe pain as a means of punishment or coercion” or “excruciating physical or mental pain.” Doesn’t seem like a definition that could be applied to Cued Speech.

    4. Cued speech is “one of the most oppressive teaching methods.”

    Unlike AVT, where children are urged to utilize their speech to the fullest and communicate verbally, Cued Speech doesn’t require a child to utilize his speech. It is simply a visual mode of expressing spoken language. At the same time, cuers can utilize their speech while cueing simultaneously. I cannot recall a case where a native cuer was admonished for using sign language or refusing to cue. Another point to make is that Cued Speech certainly isn’t a widespread method like AVT and ASL are. In Minnesota, there are a few programs that incorporate both Cued Speech AND ASL together, as showcased in an episode of Reading Rockets, titled “Signs of Literacy.”

    5. Cued Speech is “not a language.”

    Well, Cued Speech is not a language, but a visual communication system that expresses spoken language verbatim. Instead, we refer to “cued languages” as the visual languages that native cuers are exposed to. Consider cued languages as a visual mirror of spoken languages. The concept of Cued Speech is to break down spoken language at the phonemic level so that each phoneme is visualized consecutively as a “cuem” to create a cued language. My first language was Cued American English in a Southern Dialect (i.e. my parents were from the South so they would cue to me the way they pronounce it in their distinct accent).

    In the end, there’ll always be animosity from people who don’t understand or fear Cued Speech. The reality is there’s no excuse to leave unsubstantiated derogatory remarks for people to see. These negative comments are a reflection on the detractors’ character, and everyone can see plain and clear that those individuals are ignorant and prejudiced.

    https://handeyes.wordpress.com/2010/11/24/sonovas-shares-shake-and-ag-bell-quakes-or-rattles-and-rolls/#comments

  186. Larry H
    Dec 03, 2010 @ 05:34:13

  187. Candy
    Dec 03, 2010 @ 06:10:50

    Larry H

    you must be RLM’s brother. You both would hit it off well, since you both do think alike.

  188. Candy
    Dec 03, 2010 @ 06:13:56

    I left a comment in response to Diane which seem to be either in spam or blocked. Can’t imagine why since there’s nothing dangerous in that comment.

  189. Candy
    Dec 03, 2010 @ 06:32:27

    Here’s a video that was posted on Miss Kat’s site.

    There need to be videos and stories on ASL and Bilingual education. We see so many stories on CI/AV but so little on ASL.

    Parents should be equally informed. For three years, I waited for such videos and stories on deaf ASL/bilingual child. They’re hard to come by. Why?

    Enjoy this video

    Nite

  190. Ann_C
    Dec 03, 2010 @ 06:55:50

    dianrez,

    You said, “Perfection is within technological possibility. We must demand it, and complete accountability at every step of the way.”

    This world is not perfect and so is technology which continues to evolve every 2 to 3 seconds in my estimation, lol.

    Yes, we should demand accountability at every step of the way, but twit does happen, as Candy says, that’s why RISKS are outlined in every surgical procedure by doctors and in the consent forms signed by the patient or the patient’s family. That goes for EVERY surgical procedure, be it an elective procedure, or an emergency life-or-death procedure.

    An elective procedure affords a person the time to conduct DUE DILIGENCE by educating himself about it. One can ask doctors, specialists, biomedical companies such as CI manufacturers about their products, audiologists, speech therapists, etc and pursue research online through support groups and others who have undergone the procedure, etc to make comparisions and know what kinds of problems can arise.

    You forget, dianrez, that anyone who has a CI is still D-E-A-F.
    Take the processor off, that person is deaf. If Candy chooses to have a CI, she will still continue to use her ASL. After all, she is DOD and will always be DOD. Burning bridges…lol.

  191. Dianrez
    Dec 03, 2010 @ 06:56:47

    Candy, that’s a good point. Why don’t we have bilingual materials as well-designed and professionally produced as the JTC video?

    There’s some, but not to their extent. The money isn’t there. JTC and AGBell, etc. are wealthy, well-endowed, effective fundraisers with lobbyists and friends in influential areas. People have no problem donating or earmarking funds to charities that selflessly make deaf children miraculously hear and speak. Let’s also not forget that the programs are also free to parents or there are grants available to those who can’t pay.

    It’s telling that although Deaf culture and ASL have become popular in recent years, the professional fundraising and endowments haven’t reached this community.

    It’s mainly a grassroots parent and Deaf community effort at present. Perhaps our Deaf filmmakers and scriptwriters can come up with a low-cost production or two for new parents at the same quality.

  192. Candy
    Dec 03, 2010 @ 07:03:24

    Yeah, I find it interesting that my response to Diane is still not showing up. It’s where I explained to her basically that I need to know of ALL viewpoints in order to be informed. But the problem with this thread is that I am not seeing anything credible or relevant. And, I also explained that getting a CI will not change anything, and I explained why.

    Thank you Ann_C, You’re right. There wouldn’t be any burning of bridges. People shouldn’t assume things, ya know. Once a DOD always a DOD. yup.

  193. DeafSweetMind
    Dec 03, 2010 @ 11:37:58

  194. DeafSweetMind
    Dec 03, 2010 @ 11:39:26

    « Photo: Immense Mars Canyon Shows Evidence of Ancient Water
    First Patient Is Injected With Embryonic Stem Cell Treatment »
    How a Deaf Brain Is Rewired to Boost Vision
    submit to reddit . .
    0diggsdigg

    deaf-brainA brain is a terrible thing to waste–and your brain knows that. A new study of congenitally deaf cats has shown that some parts of their brains which would typically work on hearing are repurposed, and instead help out with vision. As a result of that clever efficiency, these deaf cats have superior peripheral vision and motion-detection abilities than cats with normal hearing.

    Researchers say the human brain may perform the same trick.

    For years, researchers have known that deaf people often have superior peripheral vision and motion detection, but just how the brain creates these advantages was unclear. “Over the years, we’ve speculated about how these changes might be taking place,” says neuroscientist Helen Neville of the University of Oregon in Eugene, but a clear cause has been elusive. [Science News]

    For the study, published in Nature Neuroscience, the researchers first determined that the deaf cats had augmented peripheral vision and motion-detection abilities, and then set out to find out why. They used a tiny cooling device that temporarily deactivates very specific parts of the brain.

    The scientists found that when they cooled the part of the deaf cats’ auditory cortex involved in peripheral hearing, the animals lost their peripheral vision advantage. Likewise, when the scientists deactivated the part of the brain normally involved in discerning which direction a sound was coming from, the deaf animals fared no better than normal cats in visually detecting motion. [National Geographic News]

    The results show that parts of the auditory cortex have been pulled into the visual processing system, but the researchers can’t yet say whether the brain rewiring of these congenitally deaf cats took place in the womb or during development. Since the brain loses plasticity as it ages, it’s not clear if the brains of people who lose their hearing in the course of their lives can make similar compensations.

    It certainly is a useful trick, though.

    Dr Stephen Lomber, who led the research, said: “The brain is very efficient, and doesn’t let unused space go to waste. The brain wants to compensate for the lost sense with enhancements that are beneficial. For example, if you’re deaf, you would benefit by seeing a car coming far off in your peripheral vision, because you can’t hear that car approaching from the side — the same with being [able] to more accurately detect how fast something is moving.” [BBC News]

    Related Content:
    80beats: The Eyes Have It: Lab-Made Corneas Restore Vision
    80beats: The Part of the Brain That Lets the Blind See Without Seeing
    80beats: Specially Modified Music Can Rewire Brain & Alleviate Tinnitus
    80beats: Stem Cells Could Regenerate Inner Ear Hairs—and Hearing
    DISCOVER: Lingua Ex Machina tells of deaf Bedouin children who created a completely new sign language

    Image: Amee J. McMillan. The brain diagram on right shows the slivers of the auditory cortex (in yellow) that are involved in vision processing.

  195. Candy
    Dec 03, 2010 @ 12:33:57

    DSM..

    No, I don’t mind at all. 😉

    Checking to see if Patti has responded to my question or even publish my response to Diane. Nothing yet…

    Have a great day…thank god it’s Friday….sigh

  196. handeyes
    Dec 03, 2010 @ 13:36:17

    heye all

    on the 2nd night of hanukah i gave my true love a date to a museum and chocolate and wine cafe – sweet

    it was nice

    hence i missed ya all yest

    re: the missing comment – no idea. i didnt have moderation set last night and in my spam folder i found something for viagra and some comments from RLM, myself!, jean, and larry H – no rhyme or reason for why they went to spam except for the viagra and rlm is blocked after the posted threat. now that there is an apology (sorry i didnt know it was there – i thought it would come to my inbox) ill see about unblocking

    candy is it possible that u left a comment at a different blogsite and thought it was here?
    i am not seeing any comment from u in any of the folders including trash accept for the approved folder

    to all – i have a busy day and busy weekend (latke parties!) so this thread is pretty much open and seems the cats are dragging just about everything in for discussion

    we have entered the twilight zone folks

    and the quagmire of Deaf education, Deaf bodies, Language rights, equality, and my way is the best way so there ; P

    yawn

    i dont care for the constant extremist statements on either end of the rhetoric racketball

    i especially dont care for being dissed and misrepresented

    yep i see u girl – gosh when u spin and twist dont u get dizzy?

    the more folks put out here the more we understand and see

    now many a folks have told me Candy aint sweet and i seen it and i know it but a persons a person no matter how small and i will continue to defend her right to get a CI or two and all the other latest and experimental things to come down the pike that she so desires and ill defend it by wanting to make sure it is as safe, affordable, effective, and ethical as possible

    call me crazy but that is me way

    verity is clarity

    re: all the other chit chat here – i think it has value and merit and i thank EACH of u

    candy – i will tell u if i see a lot more digs and jabs at folks from u i will block u

    one thing i have learned is that words hurt big time and they leave their mark on folks

    u can not keep saying u have a right to ur opinion and then diss or mock others for expressing theirs (u slammed both Larry H and RLM in one comment and yes u used just a few words to do it but i keep being lengthy in the hopes that u will get it)

    civil discourse

    i got a high tolerance when folks diss me but i aint got it for when they diss others.

    if we cant be aiming for the better angels of our nature we should at least be able to aim to “AGREE to DISAGREE” instead of constantly “DISAGREE to AGREE” – it gets us no where, it makes YOU look really bad, and its yawn

    re: my questions – i have been clear girl. all it requires is reading glasses and an open heart and an open mind

    a person is a person…. and verity is clarity

    peace

    patti

  197. Dianrez
    Dec 03, 2010 @ 15:16:07

    Candy, sorry your comment somehow disappeared. I’ll take Ann’s comment and your later comment to heart…that you’re still DOD. Sometimes people get a different impression of your intentions from your playing the devil’s advocate or taking the hearing position, and I got the wrong picture. Whatever you do in deciding on the CI, I’ll wholeheartedly support it and wish you well.

    Somehow the cat dragged in cued speech. It’s well as long as it is for speech therapy. That’s a difficult subject to teach and if anything helps, do it. However, there is a real concern that it could introduce a Babel to the Deaf community and to general coursework discourse. We saw it already with SEE signs–people ridiculed them and its users, people misunderstood each other, and bad feelings arose around it. The current feeling today with linguists and teachers is to arrive at a standard ASL with clearly understood rules and use it to bridge to English in a logical way.

  198. Candy
    Dec 03, 2010 @ 20:53:56

    Dianrez…

    Too many stuffs being dragged in here…

    No problem, re: your original thought on my intent w/ CI.

    On the JTC video… really, all it takes are parents sharing stories on raising successful deaf kids. That is a start. These kind of exposures can lead to bigger things. Protests and rallys only hurt the ASL community.

    Are there a community of parents online to discuss ASL and Bilingual Ed? if not, why not? It doesn’t cost a thing. Yahoo group, for one.

    Me thinks DBC is done for, they dug their own grave.

    It’s never too late to start another organization..or maybe parents should be involved with Hands and Voices. Learn from history.

    I think this thread has gone off it’s original purpose. So..i’m going to bow out.

  199. handeyes
    Dec 03, 2010 @ 22:02:49

    Well fortunately – i just happened to be logged in and saw a comment come in from Larry H – not cool chap not cool at all

    seriously – why cant we all dialogue in ways that dont involve dissing each other

    do it again and u r booted

    if folks r gonna act juvenile or invest in snidely remarks at each other or drag in way off the point stuff then discourse is not meant to be

    its a pity

    big time

    candy – if u want to diss folks for going off topic u might have to look at how some of the stuff u dragged in and done have contributed to this – ie Francis Parsons’ ASL Mafia and JTC (which is not really about CIs or AVT – its just about JTC program) and now u have exited (for real or not – not sure cuz u often say ta da or say “im out of here” only to return for a few more hits) with a proclamation against peaceful civil disobedience “Protests and rallys only hurt the ASL community.”

    Id much rather see folks do peaceful demonstrations, protests, and rallies than what i have seen happen on the other extreme

    im a green peace kinda gal vs an eco-terrorist

    now if i go up up up to the blog entry – i see me points and me questions

    if i look at the first entry i see some judgmental stuff tossed at me right off the bat – i let it roll and flow cuz we be unleashing the dam PEACEFULLY = we be trying to let folks bring forth truths peacefully

    and the truths are:
    1. that most folks undergo CI surgery without any complications later

    2. that for some folks CIs work better than for other folks

    3. there have been recalls of certain CIs

    4. there have been some deaths as a result of CIs

    5. there have been some complications and injuries from CIs

    6. CIs are very expensive and one company (Cochlear Americas) was fined for kick backs and jacking up the expense – truth was told via a whistle blower

    7. Another CI Company (Advanced Bionics) has had several recalls and one mighty big fine

    8. Both these companies are AG Bell’s valued Circle Alliance Founding Partners and give AG Bell Assoc up to hundreds of thousands of dollars

    9. there is no sound reason to deny or forbid a Deaf infant or child or adult the right to a fully natural and accessible language

    10. there is no sound reason to deny or forbid a Deaf infant or child or adult the right to using speech and/or hearing

    11. coupling cochlear implants and other assistive listening devices or future medical intervention (stem cells etc) with a purely oral method that bans the use of sign language violates the ICED Vancouver 2010 New Era agreement as well as the United Nations Persons with Disabilities declaration

    12. some dolphins are getting dead cuz they were made deaf by sonic pollution and for THEM sound is vital for survival but clearly some deaf dolphins probably do manage to survive through adaptive behaviors

    13. deaf cats expand parts of their brain normally used for hearing stuff to utilize it for visual stuff

    14. the old WARS of the communication methods are upon us

    15. the old WAR AGAINST THE WEAK is upon us in the form of the push to document and implant every infant and to legislate and/or mandate by a judge when i child must wear her CIs regardless of if they are working or hurting
    NOTE: i say “push to….”

    16. folks on both end of the spectrum feel rejected at times
    not cool not cool

    do do? not sure me

    re: bi bi videos – just a quick search and what i found – not sure how good any of them are but fyi

    http://www2.edc.org/NCIP/library/v&c/Hanson.htm

    clerc children

    smart hands
    http://www.youtube.com/user/SmartHandsCA (Hearing child – baby signs)

    DBC Minn. Chapter just raised $3,000 so they may be producing some stuff soon
    http://www.dbcusa.org/

    peace all

    patti

  200. Larry H
    Dec 03, 2010 @ 22:55:40

    @Handeyes,

    i just happened to be logged in and saw a comment come in from Larry H – not cool chap not cool at all

    Let me asking to you, why are you removed my commented off of listing, uh-huh? Do you know why? Because candy are smart mouthful to Diane, RLM, or other else and me.

    Are we on our way to becoming “Borg”? Are we in danger of being “Assimilated by the collective”? Candy mean a government collective much like the Borg of Star Trek.

    like it or not, you will assimilated. Don’t fight it. It’s already happening. They’ve got cochlear implant to restore hearing. Pfft! Absolutely 100% not truly….

  201. Candy
    Dec 04, 2010 @ 01:09:25

    Jean…

    Hey..forgot to comment back at you. I will check into that. Have never heard of magnet having toxins. But, I sure will ask. Probably not till after the Holidays. I’ll let you know, either here or on my blog or maybe on FB.

  202. Candy
    Dec 04, 2010 @ 01:54:55

    Patti..

    Not dissin people for going off topic, just pointing it out. It seems like too many topics kind of create messy discussions. Yes, I did go off topic as did many. It takes skill by a blogger to steer people back to the topic at hand. Like I said, it is your blog. If you’re okay with it, then all’s cool.

    And..

    Regarding Bilingual videos, yeah Barb made one involving hers and Karen Mayes kids, that was cool.

    We need more of that.

    I’m thinking something like parents blogging and vlogging on a regular basis like we see so many parents of CI kids do. So, advocates of ASL/Bilinguals might want to start to encourage parents doing this. There is one parent I see all the time on DR that blogs about her son using ASL but currently is mainstreamed – Mel aka Haddy2dogs. That’s one example, be nice if there’s more. This way we have not just a lot of CI blogs but also ASL/Bilingual.

    Miss Kat is another child whom I believe we’ll see more of.

    I believe the bottom line is to make sure parents are informed and that whatever choice they make is theirs. I personally do not see how ASL can take away the ability to speak or listen. Perhaps with CI, ASL is a distraction in the beginning but, I do not believe it takes away speech. It didn’t with me. I had some hearing friends of mine who were upset when I decided to to to a state school for the deaf, they told me (their parents told them) that I would lose my ability to speak. Well, they’re wrong.

    As for the listing you have above, (no links!) one where you listed deaths. You’re referring to past deaths as a result of Meningitis, correct? Any more deaths as a direct link to CI since vaccination started?

    And the one where you referred to the Judge mandating that girl to wear CI. I think in that case, it’s due to a custody issue. And, many people suggested the child be seen by an audi for further mapping. That child was okay with one CI but had issue with the other one. And,…ugh, anything related to custody battles can be ugly. I see it more of that than the issue of CI.

    I have had issues with my HA where the mold was painful. Solution was to get a new mold. Even new molds takes “breaking in” at times. I think in the older days, the materials that molds are made of can be hard on the ear. As long as there are solutions, that’s an avenue people should focus on. Rather than using it to “justify” why it is “bad.”

    No one should be telling parents what to do. Deaf people who are anti-CI are not experts in CI and there are many things they do not know. So, they should not be going around acting like an expert. They should be talking about the benefits of ASL without putting CI down. Take that JTC video, do you see any dissing of ASL directly?

    I can only do so much by pointing out the obvious. The rest is up to “them.”

    You didn’t really list all the concerns, you mixed it up with some facts that are not really “concerns.”

    Then you didn’t share with me your knowledge of AVT.

    So, I dunno…it seems like we’re not getting anywhere in that aspect (listing concerns and defining AVT). 😉 But, this has taken up so much of my time…I’d rather stop and see if we can pick up on where we left off at another time. That is, if you’re willing.

    Have a great weekend, Patti

  203. John S.
    Dec 04, 2010 @ 03:12:01

    Patti,

    Interesting entry you have there. I’m not trying to convince you to change your mind about any of your points, just offer my view. My views (for what they’re worth) are that with a diverse group of persons replying it’s near impossible to keep everyone on a specific topic. That having been said, I agree that there ARE boundaries in a topic that need to be observed and respected.

    It has been my experience on different boards that many Deaf have posted valid objective information as well as subjective opinions. One’s experiences includes both in that how they interpret the experience is based on both subjective values/experiences as well as objective information. We have tried to inform both parents and deafies of the nature of the Deaf community as well as resources that they may use. However, this information was trashed by certain individuals who not only trashed the information but the person posting it. Because these rude individuals often lied and mislead while – at the same time – advocating implanting ALL deafies it is fairly easy to associate the rudeness with the advocates of CIs. On the boards where this happened there was not ONE exception to this. Which led me to not only question the validity of CIs but to also associate anger with them. This was almost a 1:1 relationship.

    Not being OK with one CI – but not another – leads to question the validity of both proceess and product.

    The concept of vaccinations misses a point – if the object was not implanted there would be no need for the vaccination in the first place. The vaccinations confound the issue. If something does not work, to fix the damage caused by it, does nothing to prevent the damage the next time it is done. All that it does is make fixing the damage a further part of the so-called “norm” complicating the issue that much further.

    The HA was not surgically attached to you like part of a CI is. It is that surgical attachment that complicates the issue beyond the idea of making Deaf now “disabled” when we are NOT “disabled”. Because we are not “disabled” we do not need surgery nor attachments.

    Agreed, no one should be telling parents what to do. When someone advocates a healthy view of a Deaf child that is not “telling the parents what to do”. Further, because the parents may know little about deafness it seems to make reasonable sense for Deaf persons to offer a resource.

  204. Larry H
    Dec 04, 2010 @ 03:22:09

    I do not accuse the whole hearing population of practicing this

    basic= those who have had very little or no contact w/ deaf citizen

    probably have the least basic. I suggest that when hearing people

    become involved w/ deafness for the wrong reasons & w/ unhealthy

    attitudes toward deaf people, their prejudice becomes more

    pronounced in direct proportion to the amount of time they spend in

    conduct w/ the deaf population as well as the closeness of the

    contact. Prehap the most common problem between deaf & hearing

    people is the practice of a double standard. Hearing people who

    would probably be well mannered, open minded, conciliatory, &

    generally pleasant w/ other hearing people undergo a subtle change

    in their conduct when they are w/ deaf individuals. Then they are

    likely to be more paternalistic, overbearing, reproving, &

    inpatient. It is sad to relate that we also find this double

    standard among some deaf persons toward their own people!

    This is more apparent among deaf persons who have achieved

    positions of leadership or other distinguished roles in the deaf

    community, who have distanced themselves from those in lesser roles

    & become impatient w/ the deaf “person on street”.

    The attitude described above is usually unconscious & unrecognized

    by the offenders. I would like suggest that before you being

    communication w/ a deaf person, you should pause & review what is

    on the tip of your tongue. Would you express yourself excatly the

    same way w/ a hearing person? If you are convinced that the answer

    is yes, then you can proceed w/ a clear conscious. I am quiet sure,

    however, that many times the answer would be no. If so, you should

    give yourself a mental shake & try to perceive the other person as

    you would a hearing person. Then the correct words to lips (or

    rather, the hands!). I am certain that conscious offenders will

    improve w/ this kind of self-monitoring & eventually express

    themselves in the same manner to both hearing & deaf people.

    When hearing people who are ignorance of the ramifications of

    deafness encounter our disability, they are most likely to regard

    it as pathology, something to be fixed or cured. this attitude

    entails an emphasis on therapy & or prostheses. therefore, when

    small children are found to be deaf, they are immediately fitted w/

    hearing aids & given oral rehabilitation therapy. No though is

    given to the great need of these little tykes for communication

    that is truly effortless & that provides them access to the great

    world of concepts, & later on, to the school curricum.

    Instead of being exposed to input from their environment, as

    children w/ normal hearing are, the deaf & hard of hearing kids are

    given sounds they cannot hear & moving lips they cannot read. Their

    ignorance & bewilderment continue beyond the normal threshold of

    understanding & reasons. The blocking of development & access to

    knowledge is another aspect of unconscious discrimination against

    deaf people by a hearing public that is unaware of the real need of

    deaf children to learn about their environment & how to cope w/ it.

    This is evident when one compare the deaf children of hearing

    parents w/ the deaf children of deaf parents, who have had no

    communication problems since they were born. These fortunate young

    ones are, for the most part, earlier & better able to cope w/ life.

  205. Candy
    Dec 04, 2010 @ 04:36:37

    John S..

    I saw a study where they noticed many of the kid who had meningitis were likely to get it if they had not had the implant, something to do with already having higher risk factor. I will need to look for it again. But, you’re right…You said:

    “if the object was not implanted there would be no need for the vaccination in the first place.”

    However, in this link..it says:

    “Children who received a cochlear implant with a positioner were more likely to get bacterial meningitis than children with other types of cochlear implants. 3) Children with a cochlear implant who had congenital inner ear malformations alone or in association with cerebrospinal fluid leaks were at increased risk for bacterial meningitis. ”

    And, interestingly I see the reference to what I mentioned:

    “Although this study is vitally important, there is one major weakness. The study infers that children with implants are at a 30-fold increased risk of meningitis compared to a normal child. This is misleading. Hearing-impaired children are at increased risk of meningitis, even without implants. In the New England article, 11.5 percent of the implanted children had an inner ear deformity that put them at risk for meningitis, with or without an implant. 23 percent of the implanted children in the study had meningitis BEFORE receiving their cochlear implant. In another report of a child who developed meningitis after a cochlear implant, the non-implanted ear was found to be the source of the infection. The implant and the implanted ear were in no way involved.”

    So, there you have another thing that is debatable. I think they should do more studies on this.

    And, if a child is vaccinated, the parents will not have to worry about their child getting meningitis. That link way up there, where a 7 year old girl died. It’s unfortunate, and preventable.

    I’m not really clear or well versed on this “positioner” and am not clear which models or brands uses it.

  206. Candy
    Dec 04, 2010 @ 04:39:08

    oops, forgot to include the link to what I referenced above:

    http://www.umm.edu/otolaryngology/cochlear.htm

    scroll down a bit and you’ll see header “Cochlear Implantation and Meningitis”

  207. Candy
    Dec 04, 2010 @ 04:46:21

    Deaf kids are at higher risk of getting meningitis whether they are implanted or not.

    Not all deaf kids have inner ear deformity. I wonder if they were able to determine those who had implants and had meningitis also had inner ear deformity?

  208. Dianrez
    Dec 04, 2010 @ 04:52:43

    Barb Digi posted this link in Facebook. I’m reposting it here as it’s on topic. It’s saddening.
    http://www.oprah.com/community/message/1314592

  209. Candy
    Dec 04, 2010 @ 05:18:42

    Lots of questions need to be answered before anyone can really say that death was related to CI directly.

    Did you see the questions she is asking?

    Embolism tend to be the cause of brain death.

    Clearly there’s a lot of questions and no hard fact connecting that death to CI, Yet.

    From the looks of it, it seems isolated and not related to CI.

    You know how many times I have read in the paper about young, vibrant kids who are athletic and one day collapsed or had heart failure and there was no warning at all? These things happen. So, she had a heart attack during surgery. Related to CI? I doubt it. Me thinks she had blood clot and that is Embolism, it can happen suddenly.

  210. Dianrez
    Dec 04, 2010 @ 06:14:57

    The tone of the mother’s essay seems to be that the child was healthy and had undergone all testing prior to surgery, and that her child’s death was related to the surgery. She doesn’t say that it was connected to the CI.

    This is especially tragic since this was an elective surgery, not lifesaving or medically necessary to improve health.

    Yes, there was mention on this blog about acceptable risks and “oh well, win some, lose some. Twit happens.” Imagine how responsible that mother feels. You see, I don’t take a distant view of mortality statistics.

    Personally, that’s not an acceptable risk even if the odds were in my favor or my child’s. It’s highly personal, but you’ll see many Deaf people also thinking this way since they KNOW hearing is not absolutely necessary to health, independence or success. Nor is parachuting, but there are people who consider the tradeoffs and go for it with the risks clearly in mind. Twit happens.

    Like abortion, I don’t support it, but will support those who feel they must undergo it. Would I feel an ethical conflict? Yep. But stuff it due to respect for boundaries.

  211. Candy
    Dec 04, 2010 @ 06:34:26

    Right, it is elective surgery and there are risks involved.

    You’re entitled to how you feel about all of this. Entitled to decide what is an acceptable risk and what isn’t.

    These parents are entitled to determine what are acceptable risks as well.

    You’re not these parents and these parents are not you.

    Who are people to try to impose their views on others?

    Who are these people to judge parents?

    I’m sure these parents are aware of the risks involved.

    I don’t support abortion but I sure ain’t gonna go around telling people abortion is wrong. I’m not about to judge and I think when it comes to parents deciding on CI for their children, we should not judge.

    They’re aware of all the risks.

    The numbers when it comes to safety of CI comparable to many things, is still very low.

    One is more likely to die in a car accident than an airline accident, right? But, there are risks in flying neverthelses. One airplane crash too many. So, let’s just stop flying people!

    We all make all kinds of decisions in our lives and that is our decision to make for ourselves or our children, ours and no one elses.

    We discussing safety of CI or are we getting into something else?

    This thread is going all over the place, amazing.

    I think I’m done. No, I know I’m done with this thread.

    😉

  212. Ann_C
    Dec 04, 2010 @ 07:21:31

    I read the link about the Filipino case that Candy included in a comment. First of all, an embolism is an obstruction of a blood vessel by a foreign substance. That plug can be an air bubble, amniotic fluid, a globule of fat, a clump of bacteria, chemicals, and drugs (primarily illicit ones), or a blood clot, which is the most common cause. Anyone can google meaning of embolism and get similar info to what I just described here.

    An embolism to the brain causes stroke, and in more serious cases, brain death. So, if I’m interpreting what the mother stated correctly, the cardiopulmonary arrest brought on an embolism, a blood clot most likely, that traveled to her child’s brain. The symptom of seizure usually indicates brain trauma, after brain disorders are ruled out.

    Blood clots are a risk in every surgery. Apparently blood clots have occurred in different surgical procedures enough times to warrant describing blood clots as a risk of ANY surgery. For another, anesthesia during surgery can do strange stuff to different patients undergoing the same procedure and how much of a factor it’s involved with cardiopulmonary events or blood clots, one does have to wonder. Moreover, unknown heart ailments have been known to present themselves at the worst timing, sometimes during a simple surgery. Lastly, a patient’s weakened immune system from fighting one disease can cause other body systems to go hay-wire when being treated surgically for other ailments. I’m no medical expert, but I’ve lived long enough, seen some relatives/ friends die from what seemed inexplicable causes either during surgery or shortly after to know that the human body is the MOST unpredictable factor of all in surgical procedures.

    CI implants can fail or cause unpleasant side-effects, but other than meningitis, cause death directly? It seems the human body can throw more “iffiness” into a surgical procedure than bionic products do.

  213. DeafSweetMind
    Dec 04, 2010 @ 11:25:39

    http://deafnotes.com/ubb/ubbthreads.php?ubb=showflat&Number=500#Post500

    Quote:
    The Harm of Noise Pollution for Human Health

    The Harm of Noise Pollution to the Health of Human’s body and mind are as follows:

    1.Loud noises can cause ear discomfort, such as ear ringing, ear pains and hearing loss, etc. Noises above 115db can even lead to deafness. According to statistics, about 50 percent of those who are exposed to the noise above 80db for a long time lose their hearing.

    2.Noises can cause decrease work efficiency . Under the circumstance of noises above 85db,one may feel discomfort and distracted, thus he can not concentrate on his work or study.

    3.[b[Harm to blood vessels of human hearts[/b]. Noise is a dangerous factor for heart diseases, speeding up the aging process of hearts, causing high rate of miocardial infarction incidence. Long-term exposure to noises may lead to high blood pressure. Especially in night, noises cause much higher rate of incidence of a disease.

    4.Noises can make nervous system disorder, mental disturbance and incretion disorder.

    5.Noises disturb rest and sleep. One may feel exausted after one night’s exposure in noises. This condition continuing for a long time may lead to Neurasthenia .

    6.Harm for women’s physiological function. Noises can cause abnormal menstruation, abortion , premature delivery, and even abnormal embryo.

    7.Noises are more harmful for children’s body and mind health than that of adults ,because their organs are still weak. Noises can easily hurt their hearing organs, causing hearing damage or loss.

    8.Noises’ harm for eyesight. According to experiments, when the loudness of noises is above 90db,man’s visual receptor cells’ sensitivity decreases rapidly and the reaction time for faint light is lengthened. When the loudness reaches 95db,about 40% of people get mydriasis and blurred vision. And when exposed to noises of 115db,most people have difficulty to react to lightness.So those who are in the environment of loud noises for a long time can easily get eye strain,eye pain,blurred vision, and tearing. Beside,noise can cause the abnormity in color vision and eyeshot.

    READ IT CAREFULLY, How dare you harm those Deaf babies/chidren s mental and physical health. As for adult, go ahead to harm yourself that it s your damn choice if you think it s not true so therefore you are not smart enough to understand the truth.

    Thank you!

  214. DeafSweetMind
    Dec 04, 2010 @ 11:32:48

    Leave Deaf babies/children alone since this is Deaf babies/children s body properties that doesnt belongs to you. You have no right to invade their mind, soul, and body and destroy their natural body to become robot for hearing people s sakes! I dont agree with this since you cannot face the Deaf reality that doesnt mean you have the right to cross their boundary lines. SO BE IT! That is very cruel inhuman treatment that you violated already, I dont have any respect for your own selfish and wrong reason to conform or manipulate on their own mind, soul, and body that doesnt belong to you. For pete s sakes!

  215. DeafSweetMind
    Dec 04, 2010 @ 11:39:18

    This is NOT a real L O V E that you dont accept the Deaf babies and children for what you are trying to harm or conform them. It s more creating into triple disabilities that is not healthy.

    This is a real L O V E if you learn American Sign Language that is all we are asking for. It s very priceless and no harm toward Deaf babies/children. It s more healthy mind, soul, and body that should be done without any kind of damages.

  216. Larry H
    Dec 04, 2010 @ 15:24:05

    Cochlear Implant

    Posted on Jul 21, 2010 10:11 PM

    This is to report that a patient name Aisha Gail Calantoc here in the Philippines died of Cochlear Implant post operation Cadiopulmonary Arrest secondary to Brain Death.Aisha Gail since birth have profound sensorineural hearing loss, aside from that she was a healthy baby. We had several test for the hearing consist of TOAE, ABR, and ASSR. We had also done urinalysis, ECG, 2D echo and Chest xray ( Just to rule out that she have no other syndrome that had involve with her hearing loss) this test was done also in The Hospital in the Philippines. She was also seen by a developmental pedia to check if she have any autism. Had check her genetics which was stated normal.She was operated last June 1st, 2010 She had her pre- assessment laboratory test which consist of CBC blood count ( with prothime, Na, Cl), fecalysis, urinalysis, chest x-ray, ECG which was cleared. She had her pnuemoccocal vaccine and is a must before getting this type of surgery to prevent her from meningitis. From the day itself we don’t get it why my daughter Aisha Gail had cardiopulmonary arrest. It took them 37minutes to revive her.Had took her also to radiology for CT scan to check if there where hematoma in the brain but she was cleared. She started seizure that last for 12 hours.She was then announced to have brain death. The only thing that she have is using a ventilatory machine and a dextose aside from that no medication was given. We stayed in the hospital for almost 1 month and 12 days (June1 – July 12, 2010)and the only thing that is functioning was the kidneys, bowel movement and the heart (which they said had a malfunction after the surgery).The only response to the brain was her spinal reflex which is a lower motor neuron. Upon researching here in the internet their are no such cases that a patient with this surgery had cardiopulmonary arrest… The most cases which i had read is with meningitis or defective electrodes. they should have brought up this case to other new recipients so that they could have further test. This is not to harm them form getting this device, but to be studied that their would be possiblities this problem would occur.Our family is still in grief and very devastated on what had happen to my daughter. I a single mother who took good care of her since her birth would never imagine that with this kind of surgery would took my daughters life. And with this case they have never reported. I myself would ask for justice to over look this case for further help to other recipient to vivdly open the world that in this minor surgery must take extra precaution that won’t happen again..

    Questions:*
    1. Where their reports of death cases with regards to this kind of implant?
    2. Would their be any reports on what adverse drug effects would happen to a patient who undergo with this type of surgery?
    3. With patient with congenitally born with hearing disability would their be any test for their sensitivity of the drugs aside from skin test?
    4. Before starting an operation what would be the other pre- assessment test that could extend precaution measures?
    5. Is it true that on the surgery itself an air could enter and it would be a cause of death?
    6. An anesthisia given would harm with minimal or more that what had given to a patient would cause cardiopulmonary arrest?
    7. Would a leakage of the device or malfunction of the device causes death?
    *8. What is a D-dimer?what would be other embulisam that would occur from getting this?

    Hey you, Candy. see, see, see, see!?!? Told ya!!!!

    I am asking to you, Are deaf child on our way to being becoming “Borg implants”? Are deaf child in danger of being assimilated by the medical practicing collective?” She mean a government collective much like to the “Brog” of Star Trek TV series.

    Candy, do you like it or not? You will assimilated. Don’t fight by yourself. It’s already happening. They’ve got CI to death sentence.

  217. Candy
    Dec 04, 2010 @ 16:10:21

    Larry H

    Did you not see Dianrez and I talking about that? There’s no proof it is from CI. None.

    You do not seem to understand which information is credible and which isn’t. Which information is factual and which isn’t.

  218. handeyes
    Dec 04, 2010 @ 18:35:51

    heye all

    just a quick note –

    re: the link about the Filipino child – first i would ask can we all bow our heads and hands (off the key board folks) and give a moment of silence for this child and her mom and extended family

    and for us

    the world has lost some one

    and that is a loss

    and a sadness

    i assume but that is an assumption and not a fact – that it was due to the surgery and not the CI. Why did she have the surgery to get the CI – yes true.

    some will argue if she had been accepted naturally as a Deaf child she would still be alive today

    u may argue this just dont confuse it to be that the CI itself caused the death (unless that is proven further down the line)

    it seems rather that the desire to make her less Deaf contributed directly to her death

    re: the CIs with positioners that contributed to the meningitis cases in the US – Advanced Bionics is the co.

    from FDA “Cochlear implants with a positioner were manufactured only by Advanced Bionics Corporation.”
    http://www.hearinglossweb.com/tech/ci/risks/posthr.htm
    NOTE: not sure if anything has come out since that letter that includes other co. but clearly from this FDA letter Advanced Bionics was it

    Advanced Bionics has under gone alot of changes –
    Boston Scientific Corp buying Advanced Bionics
    firing of Alfred Mann
    several recalls of various CIs
    Meningitis problem due to CI with positioner
    $1.5 fine for faulty CIs
    $75,000 fine to CEO
    Sovona (Swiss Hearing device co. buys Advanced Bionics)
    CEO Jeff Greiner resigns
    Advanced Bionic HiRes 90K CI fails hot in some cases and AB issues recall

    there are more here and there but that is just the big item tickets

    re-read the Wall Street Journal article in the top blog entry and u will see why this is big news

    re: facial paralysis
    http://www.ncbi.nlm.nih.gov/pubmed/12897556

    delayed facial palsy
    http://www.biomedsearch.com/nih/Cochlear-implant-delayed-facial-palsy/19194876.html

    re: the meningitis – one study seems to say the cases were INCREASED due to the AB CIs positioners and other study seems to say say in generalDeaf kids r more prone to meningitis – things we need to ask are:

    who financed which study and why no meningitis cases with other CIs?

    it is good that they r giving the vaccination for all before the surgery

    NOTE: some folks have adverse reactions to the meningitis vaccination (low risk but does happen) hence that vaccination is not a mandatory one for infants and children in the general public

    peace

    patti

  219. mcconnell
    Dec 04, 2010 @ 18:42:14

    Candy,

    Right, looks more to be from the operation itself and perhaps certain medication may have had some adverse effect. Anesthesia is risky itself. There have been cases where young dental patients have died during procedures.
    http://www.nbc12.com/global/story.asp?s=12479185
    http://www.myfoxorlando.com/dpp/news/marion_alachua/042810-boy-dies-afer-trip-to-dentist
    http://www.healthmantra.com/blog/2010/01/boy-dies-after-dentist-visit-best.html
    http://abclocal.go.com/kabc/story?section=news/local&id=6011739
    http://forums.studentdoctor.net/archive/index.php/t-329772.html

  220. handeyes
    Dec 04, 2010 @ 18:47:18

    re: the importance of peaceful demonstrations and protest:

    https://handeyes.wordpress.com/2010/07/21/what-kind-of-extremists-we-will-be-qqq/

    yes i love martin

    peace

    patti

  221. Dianrez
    Dec 04, 2010 @ 19:08:54

    CIs with positioners were pulled off the market as of 2002, according to the NIH database.

    Questions I have are: what were the total number of meningitis cases associated with Deaf children without CIs, with CIs, associated with CIs using positioners, and have they dropped off since 2002? Perhaps there is a report somewhere that gives this info.

  222. Dianrez
    Dec 04, 2010 @ 19:23:35

    Apparently meningitis is still a concern after CI surgery. Immunization does not completely eliminate this risk in every case.

    “Because many of these factors are beyond our control, there is likely to be an inevitable baseline incidence of meningitis, perhaps related to the underlying deafness, but by controlling other factors, we can hope to minimize the incidence.

    “Despite the efforts of multiple individuals and organizations, there continue to be new cases of meningitis, including a small number of fatalities, each year.”

    http://www.biomedsearch.com/nih/Current-Status-Bacterial-Meningitis-After/20818287.html

  223. Candy
    Dec 04, 2010 @ 21:48:39

    Mike..

    Right, so if people are upset that even little kids can die from surgery, whether it is minor or major, should we advocate for bans on all types of surgery when it comes to children? That wouldn’t be smart because a lot of children have benefited from many types of surgeries. These stories, where children dies isn’t easy. But, not a good reason to halt surgeries unless it has been proven that too many kids are dying from a particular surgery. The questions I would ask a surgeon would be how many surgeries have you performed? How many surgeries have you performed that resulted in injury/deaths? (these information can be gotten from other sources as well) And so on. I would ask questions of the anesthesiologist too. They play a major role in surgeries.

    Okay…going back to work on a new post…

    😉

  224. deafa
    Dec 05, 2010 @ 14:15:19

    Some surgeries are worth the risk. Others are not.

  225. handeyes
    Dec 05, 2010 @ 14:53:46

    NOTE: – i have not been calling for a ban – just for answers

    Note; i think i have only seen 3 commenters in this thread who seem to be advocating for a BAN on CIs due to:
    – surgery safety
    – device safety
    – device permanency unless new surgery
    – denial of ASL that sometimes goes hand and hand with CI usage
    – denial of respect for ASL and au naturale Deaf folks
    = creating division within the Deaf community
    – cultural and linguistic genocide
    – conflicting values

    it is their RIGHT to express their opinion just as it is your RIGHT to express your opinion

    however it is NOT THE RIGHT thing to advocate for or against CI by bashing, jabbing, name calling, spreading falsehoods, lies, myths, or hysterics

    Candi – Re: the questions you would ask of the surgeon and the anethesiologist – they are important

    i have sat in pre-op rooms with my husband and also snuck in for a friend – folks in the bed waiting next are often very nervous and anxious. everybody is generally before they go under the knife.

    it takes a leap of faith so asking good questions and having answers is very important – especially of the anesthesiologist and their track record

    link for another report from the FDA re: the meningitis cases from 2002 – if im reading it right it seems to indicate that while there were some meningitis cases with other brands than Advanced Bionics – they were ruled to be for other reasons than the CI – pre-existing conditions etc
    http://www.tsbvi.edu/seehear/winter03/fda.htm

    there is an interesting report from 2001 that is a PDF and can be downloaded – Histopathology of Cochlear Implants in Humans by several Dr etc – while the study has a very small pool it is an attempt at a long-term study and compares the impact of CI on animal bones, deceased human bones and living subjects – when i click the link it just downloads the pdf so i dont know how to link it here – if u copy and paste the title of the article it will show up in google listing

    here is a really expensive report that looks at the BUSINESS of audiological devices etc
    http://www.reportlinker.com/p098388/World-Audiological-Devices-Market.html

    gosh even the reports are really expensive

    now ive got to wondering – why isnt there an easy compare and contrast sheet like with other types of products and appliances – a consumer report type of visual thing to compare and contrast the various CI co and models

    hmmmmm questions

    peace

    patti

  226. handeyes
    Dec 05, 2010 @ 14:57:14

    i’m also wondering why no one has commented about AG Bell Assoc relationship with Advanced Bionic as a Circle Alliance Founding Partner ($100,000), Platinum Sponsor ($35,000) for their conference and a past AG Bell Association website banner bearer – especially in light of the meningitis cases and the recalls and the failing hot CIs

    hmmmmm

    peace

    patti

  227. Dianrez
    Dec 05, 2010 @ 15:34:23

    It’s interesting that no one picked up on the Circle Alliance despite your making a point of it several times in this blog.

    Could it be because no one is surprised at what business bedfellows AGBell keeps? Or that it is futile to expect them to run a clean ship?

    Think this deserves a blog in itself. I’d like to know how common this type of business and professional partnership is, and what other industries have this also. And what implications it has for consumerism.

    And, if it is not too sensitive to explore, what implications it has for health, safety and long-term usefulness.

  228. John S.
    Dec 05, 2010 @ 18:58:06

    Candy,

    That would be an interesting study to read. Correct, persons *do* get meningitis without having a CI. The issue that concerns me (and many other deafies) is that after being implanted there is a greater risk of contracting meningitis. However, it is not clear whether this increased risk is due to the surgery, the implant, or both. The bottom line here is that a deafie stands a greater chance of being physically disabled AFTER implantation. This is devastating ethically because the negative effects occur AFTER actions based on intention to help are taken. And many – esp children – are not afforded the opportunity to make this choice themselves.

    A second issue is that of the attitude that *because of being deaf* someone is disabled. This too is debilitating because this is more opinion than fact.

    A third issue would be that with the variety of types of deafness, causes, confounding factors, etc… it is hard to believe that *one* method of treatment would solve the total number of issues. Especially when the so-called “disability” of deafness is more opinion than fact. There have been times when being deaf has been an asset!

    Because 11.5% of those with an inner ear deformity had a greater risk of meningitis with or without a CI the question I have is what happened with the 88.5% without the inner ear deformity or greater risk because of it? Correct, more studies need to be done. However, when considering research ethics the conclusions from these studies need to be examined carefully. And there needs to be back-up studies performed by independent researchers.

    On a more personal level, deafies are not labratory animals. When dealing with human beings the complexity of the human body is such that simplistic treatments for what *some* may condider to be a “disability” (until they are enlightened) are more disabling than that which they seek to “cure”.

  229. Candy
    Dec 05, 2010 @ 20:16:37

    John S..

    I’m under the impression that if a child get meningitis vaccine, there is no chance of that child contracting meningitis. I may be wrong, but that is the impression I’m getting. So, if a child get implanted, the child should get the vaccine. The meningitis isn’t an issue at this juncure. I don’t know if this vaccine is optional but if it is, perhaps it should be mandatory for all babies and children who are going to be implanted.

    I think that these risks are something parents are aware of and we all have certain thresholds where we consider some procedures not worth getting into whereas others will take the chance. I think it’s mean to hold parents accountable when something goes wrong. Some paretns will beat themselves over decisions they make while others feel that they did it out of love or that they made the decison at the best interst of their child. Who are we to make that judgement? Parents should not beat themselves over decisions they make and we all should not be doing that either.

    CIs are not experimental. It’s approved by FDA.

    Babies and children are not treated like laboratory animals. What do you base this on?

    You would be surprised at how many other kinds of surgeries parents allow their children to go through. These are not easy decisions for these parents. Not at all.

  230. Candy
    Dec 05, 2010 @ 20:20:01

    deafa

    Exaactly. And, who decides which surgeries are worth the risks? Me? You? Parents? Who?

    😉

  231. Dianrez
    Dec 05, 2010 @ 21:25:12

    Just from the readings cited here, I gather that the meningitis risk is reduced, but not totally eliminated by vaccine.

    Also, it sounded as if it might be a good idea for all d/Deaf people to get the vaccine, because of anatomical differences in some individuals increasing the risk of meningitis.

    However, due to the inherent risk in the vaccine itself, it is not generally recommended except for additional indications such as impending CI surgery. So, the vaccine should be considered an added part of the total risk of CI surgery.

    As for it not being fair to blame the parents, etc. for things that go wrong: nobody is blaming them. After all, twit happens.

    The reality is that parents WILL blame themselves just for taking the gamble if they don’t get what they hoped for.

  232. Candy
    Dec 05, 2010 @ 21:51:03

    Right, twit happens. And, I believe any level headed parents would acknowledged that they knew the risk and if their child are part of the rare instances where twit happens, they’ll accept it and move on. It wasn’t meant to be. There’s this hope parents would not be so bitter which would cause them to say bad things to other parents attempting to influence opinions. Because the truth is CI is as safe as it can be. There are no “alarming” rates involving injuries and deaths related to CI. Just like there are smaller chances of dying in a plane crash. Planes are as safe as it can be. But as it is, those deaf people whom are against the idea of CI are quick to jump to every little things they see that paints a bad light on CI. Look at Miss Kat’s mom and the email she recieved. That was not a person with sincere concern, that was hate. Is it necessary to do that? For what purpose?

  233. DeafSweetMind
    Dec 06, 2010 @ 11:22:06

    You are full of it. Candy. sighs! In a way, she denied after all the fact was proven that can affect those babies/children s weak organs in a long run.? How dare you dont see the truth? that is a real big stupid to deny the facts?

  234. handeyes
    Dec 06, 2010 @ 13:00:25

    good morning folks

    DeafSweetMind when you write “You are full of it.” that is pretty much fighting word

    a jab

    an attack

    it doesnt help the discourse at all

    ive made it clear i dont want jabs here so do it again and ur out

    note i gave the same warning to candy up above

    DeafSweetMind – u are of the mind that there should be a ban on CIs – go forth and make it happen

    re: long term effects of CI – to my knowledge there is not data showing that CIs affect a child’s organs in the long run but since i want all the answers – i advocate for an long term impartial independent investigation of the safety of CIs

    John S – i think u have hit on alot of important points of where the value conflicts take place between folks who support and folks who oppose CIs

    disability model vs cultural / linguistic model

    Candy – i appreciate several of ur comments here re: the CI surgery being no easy decision for the parents – even for those parents who have decided it is not even worth the weeest risk or who say i love my child as is and s/he can decide when they are old enuf what they want or dont want

    it is hard for all of the parents and i totally see that sometimes we and here i mean all of us (the pros and the anti and the in between) make it really hard for the parents sometimes

    we make it hard when we:
    – ignore the issue – the elephant is in the room folks
    – sensationalize the issue and grab at any little thing to distort and dismay (and this goes both ways those who are pro saying look look look she can hear from outside the house, look how happy she is to those who are anti saying look look look how miserable this guy is he hated his CI and he will hate his parents or look at this dead kid (pls folks no more of that – yes bring in facts but make sure they are factual and first and forever more pls pray for the families when we learn of any tragedy – pls) and the do nothing folks who say look look look to each their own without examining the unexamined …

    we should not be turning a blinds eye on this issue

    it clearly is impacting individual lives, families, and our community

    we should not be turning an evil eye on this issue either – trying to demonize folks who have CIs and their families

    we should not be turning an rose colored glasses eye on this issue either – trying to minimize and dismiss questions, facts, concerns, hurts and risks

    i have seen some good souls try to discuss CIs in the blogsphere only to get beaten up so i appreciate that folks keep trying to have this discussion here

    thank u all for that

    i truly have been learning a great deal

    re: Miss Kat’s mom receiving a mean email – that is WRONG and im sorry that happened.

    re: folks being quick to jump at any little thing that paints CIs in a bad light – i have seen this happen at times true – especially when folks dont do fact checking

    the original blog entry here is about Advanced Bionics latest recall because of the device failing hot in a few cases

    to me that is alarming and upsetting.

    it is THANKFULLY not the end of the world (literally) for some folks – it sounds very painful and requires further surgery to explant (which carry new risks etc) but it is thankfully treatable

    we have an obligation to share this news and facts and also to examine the BUSINESS end of CI production etc but we should not over-dramatize and over-sensationalize things

    no blinds eye, no evil eye, no rose colored glasses eyes

    NOTE: recently i learned that CI can be operated by remote control – meaning that teachers and / or parents now have the ability to turn on the implant from a distance

    is this accurate info?

    peace

    patti

    peace

    patti

  235. DeafSweetMind
    Dec 06, 2010 @ 16:52:19

    Full of it is the better word to use instead of swearing it.. So what do you want from me? after all these people are being so selfish and destroy Deaf babies/children s life for nothing. Dont tell me you are on netural sides. Thank you!

  236. DeafSweetMind
    Dec 06, 2010 @ 16:56:25

    Also I m getting fed up with all their BS after people tells me that CI parents or person got threatened email by someone. I do not believe it at all because they attacked/destroy/removed me/ my blog/ comments for the wrong reason by AUDISM for ten years. So be it! What a big joke! All I know they dont want you to know the truth that I handed it a lot on Deaf table to prove you however you chose not to listen.. So what is your problem?

  237. handeyes
    Dec 06, 2010 @ 17:52:26

    DeafSweetMind –

    u ain’t being sweet here, eh?

    i have not claimed to be neutral so pls dont accuse me of that

    what do i want from u? to put ur good energy and ur big heart into an honest effort – if u want a ban on CIs – call for one. Set up a group, a petition, a lobby, a march whatever u deem is just right and good – as long as it is peaceful and based on truths i will advocate for ur right to do so

    to spend ur time on the internet being really ANGRY at folks for things they have done or have not done, just doesnt seem like its fruitful, useful, and loveful

    re: being fed up with BS – i too am fed up with bull$hit – i dont care for it on either end of the spectrum and it does NOTHING to move us forward – it just makes the divide wide r

    re: unkind emails to parents or folks with CIs – i dont like those types of emails or comments. not just right or good

    re: unkind emails or comments to folks who support Deaf centered philosophy or ASL – i dont like those types of emails or comments. not just right or good

    we should NOT be screaming at each other

    we should be loving each other

    i know folks feel antagonized

    i know folks feel pushed into corners

    i know folks feel threatened

    and i will support and defend folks when they aim to support and defend their language and culture peacefully, lovingly and justly

    now for your final question

    “So what is your problem?”

    the hate and bitterness

    folks – i have met Jewish survivors of the Holocaust who have shown forgiveness

    i honestly can not FATHOM why some folks are so married to being angry bitter and hateful

    it is beyond me

    and i means this towards many folks in this thread and out there in the blogsphere

    this is a total war of words and unnecessary

    yes there are some unanswered questions and we should work to peacefully get answers

    I feel very frustrated that this is a never ending cycle of outlandish statements

    Truths that should be told:
    – ASL is a beautiful language
    – Deaf cultures is a beautiful culture
    – English is a beautiful language
    – American culture is a beautiful culture
    – Oppression sucks and should be challenged
    – We hold these truths to be self-evident all men are created equal…

    tread carefully – feelings are everywhere

    and come from love folks – u might just see a miracle

    peace

    patti

  238. DeafSweetMind
    Dec 06, 2010 @ 18:04:51

    Wrong concept of yours if you mind! I m angry for what happened to me and many Deaf kids who are going through with their bad health because of those damn deadly devices. No one cares about Deaf kids mental and physical healths that is the whole issue to think about, first.. No wonder there are many Deaf adults died in early age like 50s that I noticed more and more than ever if you mind. No one want to tell the truth if you mind.

    Once you recalled the bad toy that is too dangerous for any kids to have it.. So it s the same thing for deadly hearing devices that needs to be banned.. I have had already asked anyone to let me know before I can make the plans.. Guess what, no one contacted me so what s your point? I ll just have to do it myself as far as I will not tell you when will I do this.

  239. DeafSweetMind
    Dec 06, 2010 @ 18:06:55

    Also i have been very kind and sweet but I m not going to do this anymore after what I get from AUDISM if you mind. They asked for it. I dont care anymore if I am nice or not nice that doesnt matter to me.. It makes no difference after all they are lacking of self respect if you mind.

  240. Jean Boutcher
    Dec 06, 2010 @ 18:19:43

    DeafSweetMind,

    Rest assured: people like Patti Durr who are truth-seekers are not neutral people.

  241. John S.
    Dec 06, 2010 @ 19:16:53

    Candy,

    The ‘experimental’ nature of CIs is that the results of implantation cannot be predicted within the scientifically accepted degree-of-variability. As a result, it cannot be predicted what the results will be nor the level of the results. This degree-of-variability also applies to medication. Like medical procedures, the effectiveness of medication is never 100%. One theory for this is that these ranges of applicability help ensure the survival of the species. If *everyone* reacted in a similar manner to the same medication it becomes quite possible for a threat to the survival of the species to occur.

    The level and results of medically-induced negative results needs to be accounted for in the totality of a device. Not rationalized away. Included with this would be the unpredictability of the negative results. Should the negative results *not* occur then the possibility of side-effects of unneeded medication needs to be accounted for.

    Parents may be aware of risks by reading about them in brochures or other means. However, they would need to meet people who *have* those specific results. That way they would be taking the information from the abstract to the personal. By keeping things abstract they can be rationalized. Rationalization is a bit harder when facing the reality of the negativity. Further, the parents would be better off becoming personally aware of what is in the future in terms of therapies, lessons, social interactions, side-effects, etc… Included in this would be the possibility of damages to the pieces. The parents would also benefit from finding a local Deaf organization so that they can observe first-hand the social interaction of Deaf. Another benefit to them would be starting a pro-active involvement with persons who probably see no negativity in being deaf.

    Deciding on something “out of love” is interesting. I would hope that the parents love their child unconditionally. Which would mean, of course, that their love is not dependent on the child’s degree of hearing, and/or any other factor. Especially factors of a physical nature and social nature.

    I believe CIs are experimental in that it cannot be predicted to what degree that the CI will work – without the therapies. And sometimes *with* the therapies. The question then becomes – “What is the person benefiting from – the CI or the therapy?”

    My statement of treating babies and children like laboratory animals is based on the unpredictability of the effectiveness of CIs.

    True, many parents opt for elective surgery. Insurance companies may not pay for these unless a doctor includes them in a treatment plan. Which would be unethical in that the survival of a deafie – regardless of age – does not depend on either sound or pseudo-sound.

    As handeyes has it, this is a conflict of disability model – cultural/linguistic model. I reject the disability model because that is based more on opinion than fact. There is no scientifically valid data that supports the disability model. This model is values-based and as such is subject to change over time. This is true both within a specific individual and within society itself (or a segment of society).

    I have met – both online and in person – those with CIs. Unfortunately, many of those online have taken an aggressive and personally derogatory view towards myself and/or others who have a view that the Deaf model is healthy for both the individual and for society. In person, the low effectiveness of the CI is apparent in that 2 things are repeated often by those with CIs – “Huh?” and “What you say?”

    Therefore, my choice is the cultural/linguistic or community model. I have yet to see valid information that supports the disability model.

  242. finlake
    Dec 06, 2010 @ 20:11:16

    Still going at it on this particular blog post? Dayum. That’s quite a healthy discourse (from the looks, so far, I’d think)!

    I’m not sure if I posted a comment or not, but if I did, I reiterate what I said before — I’m not gonna bash them CI folks anymore. I’ve return to RIT after two decades and it’s quite an eye-opener. Why? The new generation’s got quite a hefty numbers of CI than I saw 20 years ago. ‘sides, I wouldn’t like it if somebody dissed me because I have considered opting for stem cell approach CI whenever it’s available and when I need it.

    Before you go asking me why I stated “when I need it,” I’ll answer the question. It is merely because of the career choice I chose and it has a very high demand on clear communication via the radio considering safety’s a major factor. I’m not going to let my hearing impediment keep me in the padded room with a strait jacket in regards to that career choice I made.

    However, being hearing impeded has its advantage, too! Why? I get to sleep-in and snore in a building next to the major interstate highway without hearing the damn noise. -smirk- I speak with experience.

    Anyhow, the golden rule applies here, there… hell, everywhere. Treat others as if you want ’em to treat you. Simple as that.

    Otherwise, I would personally retort in same kind. In this blog, it will be with civility. Patti knows me too well, for I do growl if somebody intentionally steps on my foot. Thank god I’m wearing steel-toe boots, because it’d come in handy as well, if you get the gist.

    So, for now, you folks have a good day. Back to Pre Calculus. -sigh-

  243. Ann_C
    Dec 06, 2010 @ 22:49:56

    John S,

    I know your reply was for Candy, but I felt compelled to address a couple of your statements.

    It’s a truth that BOTH the cultural/linguistic model advocates and disability model advocates have criticized the other online many times. It’s not all one side. Many CI wearers or parents of CI kids have reported Deaf ppl attacking them via their own blogs or private emails. Many culturally deaf v/bloggers have reported CI ppl who criticize their choice for sign language.

    The problem is a LACK OF RESPECT for one’s own decision, either for oneself or for their deaf child, be it Deaf culture and ASL or CI and speech.

    I respect your choice to remain culturally Deaf and the desire to use sign language, and in turn I hope you have respect for my choice to remain HOH, using a hearing aid and my desire to speak. I was born profoundly deaf.

    I’m a successful example of what you call the disability model, as I’m fully immersed in the hearing world. I speak with a Southern accent because I grew up in the region and don’t have a ‘deaf’ voice. And for you folks who want to scream “Audism!”, hold on here, realize that hearing/ speaking is my experience and background. I ain’t putting anybody down here.

    “I have yet to see valid information that supports the disability model.”

    Well, I’m here.

  244. Dianrez
    Dec 06, 2010 @ 23:06:54

    Interesting that the “disability model” was challenged to prove itself and Ann_C used herself as an example. To her, the disability model means using hearing aids, etc. to make a successful adaptation to the hearing norm.

    In fact, the disability model harms those who are at a disadvantage in the hearing norm even with aids. Because of this, they question the necessity for a hearing norm at all and compare this to having a Japanese norm, a tall person norm, a female norm and so on. Utterly irrelevant to living a full and productive life.

  245. Karen Mayes
    Dec 06, 2010 @ 23:49:37

    I have been following the comments with an interest, because I am a Deaf parent of a Deaf son who chose to have a CI. No, he did not receive therapy after receiving the CI. He chose to go to a Deaf school. Hmmm… He talks pretty well. He is on a swimming team, with hearing kids. And, no, he’s not a “failure”. He’s what people would call a CI success story, with a twist… he insists on going to Deaf school, keeping a firm foot in the Deaf culture which is fine with me. There’s NOTHING “audist” about this. Right now, I highly doubt that my son cares about the hoopula over CI… he’s just being a kid going through his life, not too thrilled with homework assignments, chuckling at his Deaf classmates’ antics, listening to his Ipod classic, etc. Oh, he signs ASL much better than I do 😛

    I am fully aware that people will have different views on the hearing devices, disability vs cultural models. So, following my son’s example, it’s best that I leave this discussion. People with CIs do have life.

    Happy Holidays, folks.

  246. finlake
    Dec 06, 2010 @ 23:52:50

    ok, there’s quite a fat chance my upcoming statement might stir the hornet’s nest.

    I don’t give a flying rat’s arse if they’re gonna call me any of the “ism,” but I’m gonna state I am disabled. No, wait, make that disABLED.

  247. Karen Mayes
    Dec 06, 2010 @ 23:59:20

    Ahhh… finlake. I also call myself “disABLED”. For selfish reasons, as well as in the eyes of the majority.

    But, it’s relative.

  248. Ann_C
    Dec 07, 2010 @ 00:11:54

    dianrez,

    Just as you point out hearing norm for HOH ppl, I can also point out that there is Deaf culture norm for deaf ppl…;)

    There are deaf ppl who have successfully adapted to ‘hearing norm’, just as there are ex-oral deaf who have successfully adapted to ‘Deaf culture norm’.

    What has a norm’s relevance got to do with living a full and productive life? None. You make what you want of your life.

  249. John S.
    Dec 07, 2010 @ 00:58:46

    Candy,

    The ‘experimental’ nature of CIs is that the results of implantation cannot be predicted within the scientifically accepted degree-of-variability. As a result, it cannot be predicted what the results will be nor the level of the results. This degree-of-variability also applies to medication. Like medical procedures, the effectiveness of medication is never 100%. One theory for this is that these ranges of applicability help ensure the survival of the species. If *everyone* reacted in a similar manner to the same medication it becomes quite possible for a threat to the survival of the species to occur.

    The level and results of medically-induced negative results needs to be accounted for in the totality of a device. Not rationalized away. Included with this would be the unpredictability of the negative results. Should the negative results *not* occur then the possibility of side-effects of unneeded medication needs to be accounted for.

    Parents may be aware of risks by reading about them in brochures or other means. However, they would need to meet people who *have* those specific results. That way they would be taking the information from the abstract to the personal. By keeping things abstract they can be rationalized. Rationalization is a bit harder when facing the reality of the negativity. Further, the parents would be better off becoming personally aware of what is in the future in terms of therapies, lessons, social interactions, side-effects, etc… Included in this would be the possibility of damages to the pieces. The parents would also benefit from finding a local Deaf organization so that they can observe first-hand the social interaction of Deaf. Another benefit to them would be starting a pro-active involvement with persons who probably see no negativity in being deaf.

    Deciding on something “out of love” is interesting. I would hope that the parents love their child unconditionally. Which would mean, of course, that their love is not dependent on the child’s degree of hearing, and/or any other factor. Especially factors of a physical nature and social nature.

    I believe CIs are experimental in that it cannot be predicted to what degree that the CI will work – without the therapies. And sometimes *with* the therapies. The question then becomes – “What is the person benefiting from – the CI or the therapy?”

    My statement of treating babies and children like laboratory animals is based on the unpredictability of the effectiveness of CIs.

    True, many parents opt for elective surgery. Insurance companies may not pay for these unless a doctor includes them in a treatment plan. Which would be unethical in that the survival of a deafie – regardless of age – does not depend on either sound or pseudo-sound.

    As handeyes has it, this is a conflict of disability model – cultural/linguistic model. I reject the disability model because that is based more on opinion than fact. There is no scientifically valid data that supports the disability model. This model is values-based and as such is subject to change over time.

    I have met – both online and in person – those with CIs. Unfortunately, many of those online have taken an aggressive and personally derogatory view towards myself and/or others who participate in the Deaf community and/or have a view that the Deaf model is healthy for both the individual and for society. In person, the low effectiveness of the CI is apparent in that 2 things are repeated often by those with CIs – “Huh?” and “What you say?”

    Therefore, my choice is the cultural/linguistic or community model. I have yet to see valid information that supports the disability model.

  250. John S.
    Dec 07, 2010 @ 01:18:43

    Ann_C,

    The criticism between the two advocates has not (in my experience) been equal in terms of topics and of number of comments. From my experiences it seems that those being derogatory in regard to Deaf identification have been personally negative about the “person”. While there has been ‘some’ comments like this to persons wishing to disregard the Deaf community by some within the Deaf community, most of the comments have been to discuss philosophy and/or ideas. Someone posted the following

    “Small minds discuss people,
    average minds discuss things,
    great minds discuss ideas”

    Of course, I respect your decision to identify yourself as HOH. That decision is yours and yours alone.

  251. finlake
    Dec 07, 2010 @ 01:19:34

    Now, wait a minute, John S. Are you implying you reject the physical “functional” anatomy of the disabled model as well, too?

    If yes, then why are the majority of the human species born with ear lobes as well as cochlea, and so forth?

    If not, then your argumentation may be valid in some of the people’s eyes. It is a valid argument in my eyes, and I do concur.

    And yes, I’m that uneduKated with the “disabled” models which you refer to Patti Durr’s comment (ie cultural/linguistic values), and I must have missed that post. I’m stating that
    just in case to cover my arse.

  252. Joseph Pietro Riolo
    Dec 07, 2010 @ 01:28:56

    I am sorry that I could not participate in this discussion as much as I want to. It is somewhat a bad manner to write a comment and submit it and then, leave the table for something else that I have to attend. But, I could not resist the urge to jump in. I noticed that some comments touched on the disability model. I am aware that for some people, disability and cultural models are mutually exclusive. Either one or other can only exist. However, for other people, both models can coexist. I want to share the following that I came across few months ago:

    [start of quotation]

    Fifth, theories of race and ethnicity continue to evolve in postmodern times. Theoretical advancements that have been made by Gans (1979) and Nagel (1996) make it clear that individuals can and do identify themselves in numerous ways without contradiction. For example, Gans (1979) articulated an idea of “situational identity” that frees ethnicity from rigid roles that do not permit a person to be multidimensional. Building on the work of Gans, Nagel (1994) identified what she calls a “portfolio of identities” (p. 154). For example, a person can be Deaf and Ojibwe without having to give up one or the other. When around other Deaf people being Deaf has greater salience. When around Ojibwe being Ojibwe has greater salience.20 Situational identity is also important to Deaf studies because it offers resolution to the issue of whether a person can claim a Deaf ethnic identity and also apply for disability benefits (Social Security Disability Insurance [SSDI]) without contradiction.

    Criticisms of Deaf individuals claiming an ethnic identity while collecting SSDI payments are similar to criticisms of Native Americans claiming to be “traditional” while collecting Relief for Needy Indian People payments from the government.21 Can a Deaf person be both Deaf and deaf? Padden & Humphries (1988) note, “Deaf people are both Deaf and deaf, and their discussions, even arguments, over issues of identity show that these two categories are often interrelated in complex ways” (p. 3). Deafness is most commonly defined according to medical circumstance, administrative decisions, and cultural values (Eckert, 2005; Foster, 1996).22 The three types of definitions are neither mutually exclusive nor synonymous. This compares closely with Snipp’s (1987, p. 28) observation of Native Americans being defined: biologically, administratively, and mystically (Eckert, 2005).

    [end of quotation]

    Source: “Toward a Theory of Deaf Ethnos: Deafnicity ≈ D/deaf (Hómaemon • Homóglosson • Homóthreskon)” by Richard Clark Eckert as published in Journal of Deaf Studies and Deaf Eduation, Volume 15, Number 4, Fall 2010 on page 323.

    Food for thought. 🙂

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

  253. finlake
    Dec 07, 2010 @ 01:46:06

    That’s a hell of a good article/post, JPR. I salute you, good SIR!

  254. Dianrez
    Dec 07, 2010 @ 01:51:05

    All, when I said “norm” I meant that there is a Hearing standard that virtually ignored all those who didn’t fit until the ADA, specialized schools, etc. forced the status quo to accommodate those that fall short.

    Sorry, “norm” is a sociological word that means people in a group mandates an expected behavior. I didn’t mean it that way.

    Reality: this is a HEARING world. At one time not to be hearing meant being shut out of nearly everything on a daily basis.

    I don’t blame people who strive to meet hearing standards and use whatever available devices and accommodations to do it. I do the same, too, in using interpreters, captioning, reading, etc.

    But we MUST question the appropriateness of some of these standards when they exclude any of us. Every time. Whether or not we use devices or aides, because there will always be those who don’t have that capacity to perform according to HEARING ways but who can do just as well on their own terms.

    This is a two-pronged approach: one says to give us every possible way to BE HEARING LIKE THEM, the other says to THROW OUT every requirement that requires hearing that actually has little to do with the function.

    Often this can be tricky. At one time we were banned from most universities because, after all, the lectures are meant to be heard; therefore, hearing is required. A natural assumption, one that can be defended. However, bit by bit, under constant questioning and chipping away, we are seeing barriers fall.

    But we must now prevent the inevitable argument that the CI, etc. RESTORES people to a HEARING standard. We can’t afford to be sent back to the drawing board as long as that is not universally or predictably true.

  255. Ann_C
    Dec 07, 2010 @ 01:57:07

    John S,

    “From my experiences it seems that those being derogatory in regard to Deaf identification have been personally negative about the “person”.”

    Dunno how long you’ve been observing the Deaf blogosphere, but I can aver that the ‘personally negative’ extends to those “being derogatory in regard to”, as you say, deaf, as in small d, identification as well. There has been a LOAD of it, particularly on DR.

    “The criticism between the two advocates has not (in my experience) been equal in terms of topics and of number of comments” is a subjective assumption. I could say the same from my point of view, but I’m gonna leave it be.

    As for the quote you referred to, it’s been mentioned many times on the deaf blogosphere. Ideas!!! I only wish.

    JPR,

    You bring up a very “salient” point, about situational identity. Thanks.

  256. Candy
    Dec 07, 2010 @ 02:01:56

    Wow….

    Where do I start?

    Okay…let’s see, DSM said I’m full of it. But she didn’t really explain why she thinks I am except she stated that CI can affect babies/children’s weak organs without citing any facts. DSM, before you start in on me, how about providing me with facts such as any cites or references to that claim you have just made? Not some hearsay. DSM, can you show me any facts that deaf babies life is destroyed? Show me proof. You said you “handed it a lot on Deaf table.” Well, what is it that you “handed it on”? Rants coming out of your mouth? Or do you really have actual proof such as documents or reference to any first account stories by the parents themselves?

    And then, DSM, you said:

    “I m angry for what happened to me and many Deaf kids who are going through with their bad health because of those damn deadly devices.”

    Really? Ok, let’s go over what you said. What happened to you? You went through bad health because of those damn deadly devices? What devices? Can you elaborate a bit more?

    I have worn hearing aids since I was five and I am thankful my deaf cultured parents are not biased. They were told I am HH, and they understood that it would be cruel to deny me hearing aids.
    ey knew I would benefit from hearing aids and they gave me that opportunity selflessly.

    There is NO evidence hearing aids causes health problems. I’m quite healthy as it is and have been every single day of my life. I have not seen evidence that CI causes health problems or causes weak organs. I don’t know where you got that information from other than..it seems like you’re making it up. That’s not cool. And, then you said “No wonder there are many Deaf adults died in early age like 50’s.” Really? Ya know what? I have been involved with the Deaf Culture all my life, this is the first time I have heard of such claims. Where did you get that from DSM? Either show proof or I am going to accuse you of being a compulsive liar.

  257. Candy
    Dec 07, 2010 @ 02:36:37

    John S…

    First off, please understand that MOST, if not all, insurance WILL NOT cover CI if CI is experimental. Okay? That is why I said CI is not experimental.

    You seem to think that it is experimental because results varies. It is true that results vary and it depends on a lot of factors. A lot of factors can include any of the following: Parental involvement, AVT, whether a child has other disability, anatomy of a child’s ear, etc. I believe you are using the wrong word. Because of the variety results, that does not indicate that it is experimental.

    If one were to argue this in court (theoretically), CI will be deemed NOT experimental. That much I can tell you. Even if you argue “results varies.” To be honest, your argument is weak.

    If there are negative results, it could be because parents did not follow the recommended guidelines. I think this is one of the several reasons why CI did not achieve the expected results for some recipients. Unfortunately, not every parents are involved or follow the recommended guidelines. For that reason, I really believe that parents should be screened before their child gets implanted. That’s my opinion. There are some parents who may think that once a child get the implant, the implant does the work on its own.

    What makes you think parents are not that well informed as far as knowing that CI works differently for each child? From what I was able to find out, while doing my research for possibly getting an implant, I already saw that results do vary.

    Trust me, these parents are much more informed than you are.

    You said:

    “I would hope that the parents love their child unconditionally.”

    What makes you think they don’t?

    Are you a parent? I am curious.

    John S, just because you have yet to see valid information that supports the disability model doesn’t mean it’s not there. I suspect you’re in “denial” and you argue with anything that shows that disability model works. Like what you are doing now. So, my question is what do you want? What do you want to see happen to CI? We all know CI works, we all know it has been successful for many. There’s no doubt about it. I think you know it too, and that is why you’re here.

    I’m one good example of the disability model. And within the deaf culture too! But, I’m not the only one. There’s plenty of them out there too.

  258. Ann_C
    Dec 07, 2010 @ 03:04:56

    “But we MUST question the appropriateness of some of these standards when they exclude any of us. Every time. Whether or not we use devices or aides, because there will always be those who don’t have that capacity to perform according to HEARING ways but who can do just as well on their own terms.”

    I understand what you mean. There was an instance when I had to serve jury duty and asked for appropriate hearing assistance. The court number I called for hearing assistance during jury duty said, fine, we’ll get you an interpreter. I answered, no, no, I can’t use an interpreter because I’m not fluent in sign language. There was this long pause on the other end and then they asked, what would you require? I said, CART service would be very helpful. Another long pause. They came back and said, Sorry, the county can’t afford that service. Slow burn. Well, California is dead broke. They can get me an interpreter, but not CART–go figure. That’s exclusion. Just another example of how hearing ppl mis-construe what constitutes deafness and how loud a voice Deaf culture has in terms of disability rights. That’s a topic for another day.

    Anyway, all of us deaf and Deaf have to advocate for all services we need, whether it’s interpreters, CART services, transliterators, captioning for all media, video relay services, Captel or phones equipped with volume boost features, and so on, because we all have a right to understand what is being said/ signed and to communicate on our terms, not just on hearing terms.

    CI’s don’t restore hearing, not permanently. Heck, a CI implantee is as d-e-a-f as any of us, when the processor is removed. A hearing aid wearer is as d-e-a-f as any of us, when the aid is removed. No child growing up with that hearing technology is gonna claim he’s always hearing, lol. Many of us sleep without the aids/CI’s, have had batts die in the middle of a convo, have had parts go wrong in an aid or CI, etc. Technology notwithstanding, I do believe that those of us who use hearing technology acknowledge that deafness has many advantages, just as hearing has many advantages as well. 🙂

  259. Candy
    Dec 07, 2010 @ 03:15:37

    Out of curiosity and in an attempt to understand people who still bashes them CI folks, finlake..

    you said:

    “I’m not gonna bash them CI folks anymore”

    So, are you saying at one point in the past, you have bashed the CI folks? If so, why? What did you hope to achieve by bashing them?

    Am glad you don’t anymore, that is if you had at one point in the past..

  260. handeyes
    Dec 07, 2010 @ 03:16:35

    heye all

    i want to clarify re: disability model vs. cultural / linguistic model

    i probably should have stated:
    medical / pathological model vs. cultural / linguistic model as this is how the paradigms are generally referred to

    joseph – its cool that u brought in a quote from Dr. Eckert – ill let him know and perhaps he can stop in to chat at some point (no promises)

    Dr. Lane has an article called “Ethnicity, Ethics, and the Deaf-World”
    http://jdsde.oxfordjournals.org/content/10/3/291.abstract

    in which he advocates for an ethnicity model

    Dr. Baynton has an article where he acknowledges that Deaf straddles both paradigms the cultural / linguistic and disability. Disability as a cultural construct not as a “oh poor wittle u, u cant do what i do…”

    disability really is a cultural construct

    previously women were deemed to be the weaker sex

    Native Americans were deemed to be savages

    African Americans were deemed to be genetically inferior

    Gay/Lesbian/Bi/Transgenders were deemed to be a psychological disorder

    Jews were deemed to be a defiled race

    YEP – oppressive systems have used physiological differences to diminish, degrade, distort, and destroy folks (ie Jews during the Shoah, girl fetuses being aborted or infantcides, etc)

    still happens in some space / places

    not cool not cool at all

    so the binary – either or model was for the pathological / medical model that basically said “MUST FIX” and “MUST STOP / REMOVE / REDUCE” vs. a Cultural / Linguistic model that said “MUST ACCEPT” and “MUST LOVE”

    disability framework / model as i understand it from the FIELD of disability studies – i think is still in sync with a cultural / linguistic model – i think it still advocates for a respecting of the personhood of the individual and attempting to change and shift society’s perceptions and stigma towards disabled folks rather than a manifest destiny doctrine of must ALTER and the disabled person

    at least that is how i understand disability studies currently but im not that well versed inn that as i am in Deaf cultural studies

    so whether or not folks want to self-identify as disabled or Deaf or Hard of Hearing etc – i dont think really matters as much as if u feel that folks MUST change themselves to fit in and/or succeed or that folks should be accepted for who they are (and this works for a variety of “forms of who they are” – Deaf ASL au naturale, late Deafened, Deaf with CI, Deaf oral, Hard of Hearing, CODA etc etc etc…)

    in general most Deaf folks are multicultural and many are at least bilingual to varying degrees

    to me the “danger” with CIs culturally and linguistically is if they are coupled with an oral / aural only mandate

    the “danger” for the person with CI may be that they are never fully either (Deaf or Hearing)

    at least this is what seemed to be said at a few presentations i attended on CIs – folks seem to say at best they become functionally hard of hearing and for some that puts them into the limbo land “how low can u go???”

    oh my gosh will this thread ever end??? smile

    just teasing

    i do appreciate all u all r sharing

    peace

    patti

  261. Candy
    Dec 07, 2010 @ 03:25:58

    I would argue against ethnicity model. Doesn’t exist.

    Looks like you have a record, I don’t think anyone has ever had that many comments as you have. Wow. 😉

  262. finlake
    Dec 07, 2010 @ 03:28:06

    Candy,

    Oh yeah, I have in the past — it was not the norm back then 2 decades ago. I felt “why you gotta go frankenstein-ish when you could have use the existing technology, hearing aids?”

    Little did I know for some, the hearing aids will not work at all. I was an ignorant kid back then and did not know better, i.e. did my homework more thoroughly. C.I., in my opinion, was in its infancy out in DC 2 decades ago.

    After a while, when I left school, I sorta wise up and realize the C.I. are the same as I am — deaf.

  263. Candy
    Dec 07, 2010 @ 03:31:08

    LOL

    Patti, I am neither fully deaf or fully hearing. I don’t see nor feel nor sense any danger.

    I think those with CI who do not see themselves as fully hearing are probably handling things well in the world because I don’t really experience much difficulty as it is with my HAs. I’m sure they’re a bit better off than I am, so…where’s the danger?

    What danger?

    It’s safe to be completely deaf and use ASL? It’s safe to be hearing? In what aspect? what is it that makes it safe? What kind of danger are you talking about?

    It’s easy for someone to say these things but, how do you know? You have no idea what it is like to have a CI. How can you determine that it is dangerous to be neither deaf nor hearing?

  264. handeyes
    Dec 07, 2010 @ 03:34:52

    Candy – u?
    u can argue with something? i can NOT imagine!

    smile – just teasing

    re: Dr. Lane and ethnicity – he has a whole new book coming out on the subject with FACTS!

    wow that dog!

    he is so smart doing research and having numbers to back up his points and not just personal observations boy oh PhD boy!

    and a MacArthur genius award winner too and the author of two major books re: Deaf history – When the Mind Hears and Mask of Benevolence and even had videos made in ASL of When the Mind Hears and… more books and…

    but u go to it girl – i believe in ur arguing abilities

    seen ’em in action up close and u may now take a bow for the high number of comments here smile

    without u – this all would gone quiet pretty quick

    funny how that works ain’t it

    re: Dr. Lane’s book title – u will never guess what it is

    or maybe u will

    ; )

    peace

    patti

  265. Candy
    Dec 07, 2010 @ 03:38:03

    Okay, finlake…

    You were a kid. I was ignorant too way back then, but I don’t think I ever bashed anyone. The more I read up on CI, the more I understood it and when i saw how far advanced it has become over the years, that is when I started to consider it. I guess your answer didn’t really help me understand why deaf adults bashes others with CI (they’re not kids.) Except what I have seen lately – maybe fear. Fear that more and more babies and kids will be implanted, which means the possibility of one day CI kids will outnumber deaf ASL signing kids in a classroom. I think it is already happening in mainstream program, not sure it is at a deaf school. What is the ratio of CI kids vs non at RSD for example?

  266. Candy
    Dec 07, 2010 @ 03:39:21

    haha Patti..

    Dr Lane with facts?! Really?! That, I must see.

    😉

    Dr. Lane isn’t that smart, in my opinion. He does not understand deaf culture like I do.

    😉

  267. Candy
    Dec 07, 2010 @ 03:41:58

    Maybe I ought to stop…

    lol

    I think debating is a better word than arguing, but in order to debate one must argue theories. Ya know, Lane never really had that much facts in his previous books. Pretty much everything he wrote was debatable. 😉

    Ok, I’m going to take a bit of a break..let’s hope the comments die down. lol

    ta da (not bye bye)

  268. Candy
    Dec 07, 2010 @ 03:44:04

    Oh, and let you know..I’m watching Eclipse on my computer right now…so, I might not be back for another two hours. I saw the movie without captions at the theater. I read the book, so watching it with FM system (ahh it’s ok) was better than nothing. But, now I’m going to watch it with CAPTIONS! Whoo hoo!

    Twilight RULES.

  269. handeyes
    Dec 07, 2010 @ 03:48:58

    oh candy – ur questions came in while i was typing to u

    gosh its like ichat eh?

    re: “danger” of CI coupled with oral / aural only MANDATE

    read me WHOLE sentence pruty please

    this is based on what many scholars and researchers have written re: human and linguistic rights – if folks are ACTIVELY DENIED or FORBIDDEN from a fully natural and accessible language etc (see tove skutnabb-kangas, cummins, lane, jokinen, etc)

    re: the “dangers” of making Deaf folks more like hard of hearing folks via CI – this is based on what i saw at several presentations from experts on CIs and folks in the field who were working with young kids in mainstream settings

    one slide of a PP said “hard of hearing” Oh NO the FORGOTTEN PEOPLE

    i was like huh??????

    cuz like u – me too is hard of hearing and i didnt know i was a forgotten people but when the presenter explained what she meant i understood it

    the thinner folks – meaning the neither / nor are more likely to slip through the cracks, eh? to be forgotten to sink or swim and kinda just tread water as they go down stream in the current and not really swim

    does this mean ALL

    no certainly not

    nothing is true for all always, eh

    i put “danger” in quotes because it is a concern not a take them out to the field and shoot them kinda thing but it is an educational (as reported by the experts), sociological, cultural, etc concern

    re: ur backgound – well u (and other children with Deaf parents) had some privileges that the average child with a CI does nt have right? u had a fully natural and accessible language at birth, u had strong roots and foundations in Deaf culture (norms, values, traditions, language, and possessions)

    that is atypical

    still it aint the end of the world many Deaf folks do live completely in the Hearing world with no contact with the Deaf world – there have always been folks like that

    there have never been ANY Deaf folks that i know of anywhere on the globe that have ever lived 100 % amongst Deaf folks without any contact in the Hearing world – they are by nature and by birth bicultural beings

    peace

    patti

  270. finlake
    Dec 07, 2010 @ 04:16:53

    Two easy answers, Candy. I was one of those Deaf extremist who would go at all cost to ensure we go Deaf all the way during my high school years and college days, til I was tossed back into hearing world few years later and realize the world DOES NOT revolve around the extremist Deaf’s mandates. Secondly, the other answer is easily this — Peer Pressure.

    Now? I still am proud to be Deaf, yes, but that doesn’t mean I will get rid of my auxiliary devices for me to remain “functional” in my hearing working environment’s criteria.

  271. finlake
    Dec 07, 2010 @ 04:29:11

    By the way, I was an outcast when I entered the big ‘D’ world, and I mean BIG ‘D’ school. Why? I was not fluent with ASL, use SEE, and was “hearing-minded.” Afterwards, I got accepted to be the big D during the high school years eventually. HOWEVER, I became “them” and rejected those who weren’t fluent with ASL, use SEE and “hearing-minded,” too. It did not dawn on me by listening to “them”
    b—hing about how much they were oppressed by the hearing people, and yet i see them (myself as well) oppressing out own people, but it was in my mind at the time. Well, guess what happened when I entered the college atmosphere? I got rejected, again, because I didn’t meet the criteria of the elite big ‘D’ people. I even entered the frenzy of attacking those who had C.I. to a subtle degree.

    Not all of them were cruel, though. Some were actually kind, which stuck to my mind ever since and do admire those people who chose not to conform to the mob mentality.

    Anyhow, the bottom line is once I’m an outcast, I will always be an outcast.

  272. finlake
    Dec 07, 2010 @ 04:29:56

    out = our

  273. Ann_C
    Dec 07, 2010 @ 05:04:34

    finlake,

    What’s interesting is that both deaf and Deaf find themselves as outcasts, as in outcasts from the hearing world. What makes it worse is d/Deaf ppl cutting another d/Deaf person down to size and made to feel like an outcast within his own community. Like we so need to do that, huh? I find that so weird.

  274. Karen Mayes
    Dec 07, 2010 @ 10:24:14

    Wow, still going.

    Candy, there are a few students with CI at RSD…there’s still a strong belief that young people with CIs are better placed in mainstream schools.

    Anyway, I do remember a decade ago, I was very leery of CI, even against them, because I felt it was not a “norm”, like finlake mentioned. But I was not agog, not extremist, etc. I just did not know how to make of CI thingy. Then RSD offered a workshop which I attended… and I learned a lot. I quickly realized that CI might benefit my son, due to his progressive hearing loss. Since then I have been supportive of CIs AS a device… I never saw it as a death knell for Deaf Culture.

    What Joseph said… very well.

  275. Karen Mayes
    Dec 07, 2010 @ 10:47:14

    To answer one commenter way above…yes, I did receive a FEW emails about CI… one attached a vlog to the email about a child whose CI “exploded” out of his skull last year, trying to scare me and an youtube email calling me a murderer of Deaf children’s souls. My son had to endure watching the conversation about CIs from adults who KNEW that he’d be undergoing the surgery… he said that they felt “sorry” for him and that he’d have a lifetime of health woes because of it.

    Not pleasant and not acceptable.

  276. handeyes
    Dec 07, 2010 @ 13:20:09

    jean – i neglected to thank u for your comment re: truth-seekers

    it is very much appreciated because some times folks try to paint me and my actions in a very bad light to suit their own purposes – i have been called just about everything lately but to see u refer to me as a truth-seeker here in this thread when folks r trying to desperately to drag the discussion into the muck is really refreshing

    seriously it was almost like a homing device – made me realize that the TRUE TRUTHS that have been emerging in this thread and not all the hot air, finger pointing, extreme rhetoric on both ends of the spectrum is coming out – it is and so forward march

    i thank u for that label. i aim to earn it.

    karen – ur singing and sharing ur truths and that of ur son’s is also very heartening and brave of ya. thank u.

    john s, jpr, dianrez, ann_c and finlake – i very much appreciate how u share and seek here. thank u.

    finlake – not to discourage u but rather just to let u know that folks i know who have CIs still lament about employment woes (and they dont even work in fields that involve safety issues) they are still experiencing discrimination and misunderstanding and mistreatment in the workplace are at times due to being Deaf regardless of how well their CIs work or how well their speech is. in fact i have learned of a few cases where people were denied access accommodations due to the CI and appearing to “function” so well without it (kinda like the amy rowley US supreme court case – she did not have a CI but since she was faring so well in school without an interpreter or any support services the US supreme court deemed that the school district did not need to provide her with an interpreter despite her parents request for one. Reasonable accommodations were not merited based on her being Deaf but rather based on how well or poorly she was performing in school. seems this premise is now being extended to the workplace despite ADA)

    finlake re: ur being an ex-basher and now not – GREAT and i thank u for making that change. I would not use the word extremist because that should really be reserved for folks who are truly extreme – when we brandish folks with this big labels like “terrorist” we really diminish our argument because there are REAL terrorists out there and REAL extremists and a bunch of kids being mean are not extremists – they might be bullies and it definitely is UNACCEPTABLE – even more so when it comes to ADULTS

    once a young Deaf guy told me of how he was picking on a kid with a CI and his Deaf teacher told his Deaf mother (who also worked at the school) and the Deaf mom came and found the guy and blasted him big time – “you are NEVER to do that again that is wrong – he is Deaf etc….” and i thought sweet – that is how it should work – “it takes a village… etc” and the young Deaf guy was remarking about how he still felt bad about what he had done so im really grateful he has such a good mom

    so really all of us have an obligation of when we see folks mocking or harassing someone with a CI to let them know – not cool

    also when we see folks with CI and / or speech who can sign refusing to using it in front of Deaf ASL folks mocking or harassing someone who is ASL to let them know – not cool

    candy – ur latest dig directed at Dr. Lane – wow that is really heartbreaking for me to witness. I dont agree with everything Dr. Lane has written but when u discredit and diminish him and his work like that it totally undermines YOU. it really makes u look juvenile to keep pulling out the “its debatable…” “i could argue…” “i know because I’m Deaf of Deaf…” cards

    this is beyond grade school pal. this is dissing the person instead of discussing the concept (Deaf as an ethnicity)

    i am allowing it here because the sun is a good disinfectant

    and because even if ur bed is all messy – u seem to like it that way and wish to display it to the world for all to see

    ta da world come see what the cat dragged in
    —–

    i forgot to add this link someone showed me:
    http://www.ehwhathuh.com/2010/12/my-speech-therapist-was-jerk.html

    it shares various experiences with speech therapy and audiology

    Peace,

    Patti

  277. handeyes
    Dec 07, 2010 @ 13:25:05

    in me in box this fine morning i received a lovely list of what each Hanukah candle represents and its very sweet because its like
    light, knowledge, justice, mercy, holiness, love, and the 7th night which is tonight is PATIENCE
    “Seventh Candle: The seventh light is the light of patience. Little worthwhile can be achieved in haste. The soul of men and women grows slowly to perfection.”

    so maybe this is why this thread has gone on so long and so hard???

    we r growing some souls?

    may we each be a light unto the world

    peace
    patti

  278. Deafnicity
    Dec 07, 2010 @ 15:04:56

    Cabdy – I am curious. Is your argument that Deaf are not ethnic based upon a categorical understanding of ethnicity or is it based upon a social scientific understanding of ethnicity as a desription of a set of relations, usually involving some structural inequalities (colonialism?) and ideologies (audism?)that eventually incite adaptive and strategic responses or praxis (Deafhood) by the subordinated population in that set of relations? If you seek to use the misunderstandings popularly consumed by postdeaf apologists such as Davis or Fernandes and Myers (Myers and Fernandes in their companion article) — there is really no point in my responding to your comments. If on the other hand you wish to discuss the content of what Jospeh posted, I would be more than happy to respond to any evidence you provide that argues against ethnicity. The article I wrote gives a historical overview of ethnicity theory that might be assist your understanding of why the Deaf population is an ethnic population, just not a categorical and static identity as Davis incorrectly presumes ethnicity to be.

  279. Candy
    Dec 07, 2010 @ 16:14:09

    Deafnicity..

    You said:

    “The article I wrote gives a historical overview of ethnicity theory that might be assist your understanding of why the Deaf population is an ethnic population, just not a categorical and static identity as Davis incorrectly presumes ethnicity to be.”

    Where’s the article? I’d like to read it.

    I’ll answer your questions later..

  280. Candy
    Dec 07, 2010 @ 16:21:31

    Patti..

    Thank you for sharing Hanukah. I find it interesting. Will respond to some of the things you mentioned later…

    Sorry. Time and I do not mesh well.

    😉

  281. Candy
    Dec 07, 2010 @ 16:28:00

    Deafnicity..

    Just want to make sure, are you referring to this article?:

    “Ethnicity, Ethics, and the Deaf-World”

    I’ll read it later, if not that one, point it out to me. I’ll try to get back to you after work. I do have to work! Thankful that I do have a job too. 😉

  282. finlake
    Dec 07, 2010 @ 17:16:00

    Patti —

    A brief break from Pre Cal; Amy Rowley — must be the same person I knew back in the days. Looks like a very interesting case for me to purview, via Supreme Court. As for the discrimination experience, I would say yeah, I have experienced that at work only once in 7 years of employment. He’s long gone. Good riddance. As for interviewing for jobs, twice I simply couldn’t get the job because the hiring person was actually basing the decision on my auditory issues, which is b.s. I end up having both job with the exact same parameters several years later at the parent company. So totally fked up. As for the other CI people experiencing the same thing; really, the auditory deficiency of our entire tribe has a great variance of auditory retardation. Therefore the definition of functionality in others’ interpretation would play a factor in granting the assimilation of our people to the society.

    As for extremist usage, I believe the word applies in my post because there is an entry which defines it within my parameter/interpretation of my experience:

    extremist: [noun] 2. a supporter or advocate of extreme doctrines or practices.

    extreme: [adjective] 2. utmost or exceedingly great in degree

    practice: [noun] 4. condition arrived at by experience or exercise

    However, you are correct in similar view — it does carry a negative connotation. So, do you know a better word that would describe “them” from my experience? I do not at the moment, and did settle for extremist at one point. I’m just trying to be sensitive and comply to the comfort level of all of our people.

    I’m glad the “picking on another kid” ideal has been nip at the bud via that gentleman’s comme il faut mother. At least we do have decent people striving for the “Greater Good.”

  283. John S.
    Dec 07, 2010 @ 17:55:41

    finlake,

    Of course not; I do not reject functional anatomy. It is precisely the functional anatomy that allows for a human being to adapt to physical/functional/social changes. This would include changes in sensory perceptions. Thus, should one be deaf they have the ability to adapt by learning sign. This gets into the ranking of physical functioning with the brain being primary. It is the brain’s functioning that allows for adaptation. A person can use their brain functioning to learn and use ASL (or whatever is culturally appropriate). Not only that, but their adaptability allows for other shifts such as visual doorbells, vibrating alarm clocks, etc…

    Personally, my ear lobes are very sensitive to cold weather. When it is very cold my ear lobes sting. This may be a warning that unless I take action to keep warm other, more vital parts of my physical being may be threatened in the immediate future. Thus, this warning may help maintain my life. And there are many other functions like this as well. If my toes get cold I know I better take appropriate actions. And it is not just cold. There are other warning systems in the human body that help prevent illness. The taste and/or smell of certain foods tells me that they are safe to consume.

    The human body has the ability to adapt. Just as we have the ability to adapt to temperature changes we also have the ability to adapt to other sensory changes. Thus, as Deaf persons we may adapt by being visual and learning to sign. This learning to sign is at any age. This is an example of our ability to adapt.

    It’s this ability to adapt that is a product of our intelligence.

  284. Deafnicity
    Dec 07, 2010 @ 19:19:58

    I meant my article that Joseph quoted – Toward a Theory of Deaf Ethnos. Lane’s article uses an ethnie model of ethnicity as I used in my dissertation. It works, but too many folks treat ethnicity as a static categorical variable and too many assume that assimilation into hearing society results in great social mobility. The ethnos model also is better for future statistical modeling purposes. Hope this helps.

  285. handeyes
    Dec 07, 2010 @ 22:48:36

    Thanks for the info Deafnicity (let us know if u prefer to be called by a different name). i had read ur dissertation many moons ago but still need to read the Deaf Ethnos article by u that Joseph quotes from. i very much appreciate the info that Joseph did lift because it tied into some of the discussion we were having re:
    Disability identity vs. cultural / linguistic identity

    u have noted three sets that are often interreated and not mutually exclusive – when u discuss disability – is it as a cultural construct?

    Have u read Baynton’s writings on this subject – Beyond Culture in the Open Your Eyes reader and Deaf Studies Kaleidoscope conference proceedings

    Baynton also examines nature / natural and normalcy in depth in his book Forbidden Signs: American Culture and the Campaign Against Sign Language as does Damned for Their Difference: The Cultural Construction of Deaf People as Disabled by Branson and Miller (UK focus but mentions the US situation)

    social darwinism being a big part of it

    those text are in depth historical analysis of facts

    it seems to me ur work and Lane’s latest (with Pillard and Hedberg) are theoretical frameworks with statistical data and analysis to support it

    I have not “read” this paper which is in International sign language but it might have some bearing or be of some interest – Hilde Haualand “Sound and Belonging” in the Deaf Studies Digital Journal Volume I http://dsdj.gallaudet.edu/index.php?issue=1

    peace

    patti

    —–
    info on Lane, Pillard and Hedberg’s new book

    http://www.amazon.com/People-Eye-Ethnicity-Ancestry-Perspectives/dp/0199759294/ref=sr_1_3?ie=UTF8&s=books&qid=1291759881&sr=1-3
    The People of the Eye: Deaf Ethnicity and Ancestry
    What are ethnic groups? Are Deaf people who sign American Sign Language (ASL) an ethnic group? In The People of the Eye, Deaf studies, history, cultural anthropology, genetics, sociology, and disability studies are brought to bear as the authors compare the vales, customs and social organization of the Deaf World to those in ethnic groups. Arguing against the common representation of ASL signers as a disability group, the authors discuss the many challenges to Deaf ethnicity, in this first book-length examination of these issues.

    Stepping deeper into the debate around ethnicity status, The People of the Eye also describes in a compelling narrative the story of the founding families of the Deaf World in the US. Tracing ancestry back hundreds of years, the authors reveal that Deaf people’s preference to marry other Deaf people led to the creation of Deaf clans, and thus to shared ancestry and the discovery that most ASL signers are born into the Deaf World, and many are kin.

    In a major contribution to the historical record of Deaf people in the US, The People of the Eye portrays how Deaf people-and hearing people, too-lived in early America. For those curious about their own ancestry in relation to the Deaf World, the figures and an associated website present pedigrees for over two hundred lineages that extend as many as three hundred years and are unique in genealogy research. The book contains an every-name index to the pedigrees, providing a rich resource for anyone who is interested in Deaf culture.
    Table of Contents
    http://www.amazon.com/People-Eye-Ethnicity-Ancestry-Perspectives/dp/0199759294/ref=sr_1_3?ie=UTF8&s=books&qid=1291759881&sr=1-3#reader_0199759294

  286. handeyes
    Dec 07, 2010 @ 23:11:45

    candy – i understand BUSY

    hope life is not crazy for u right now

    finlake – re: work discrimination

    not sure if this will be of interest but its a Grad students thesis re: Hearing Privilege (similar to White Privilege concept)
    http://facundoelement.com/articles/Butterfly_Effect_Series/3.html
    scroll down for the link to down load the thesis

    i havent read it yet but am familiar with the “privilege” stuff from other readings on colonialism and post-colonialism etc

    also if folks have an interest – check out:
    https://handeyes.wordpress.com/2010/12/07/vote-for-kids-asl-dictionary/

    there is a link about an ASL animated dictionary for Deaf kids via the Deaf Culture Centre and their Pepsi Refresh attempt for a $100,000 grant

    if they get it – to my knowledge they would be the first Deaf ASL project granted a Pepsi award and many of us have commented on the dearth of ASL materials out there for young children

    click away folks – we have until dec 31

    The Deaf Culture Centre – totally rocks

    peace

    patti

  287. Candy
    Dec 07, 2010 @ 23:29:35

    Deafnicity..

    Yes it does.

    I find it interesting that you would claim these post-apologist to be full of misunderstanding. 😉

    As a DOD, I don’t subscribe to colonialism, axdism nor deafhood. And, neither does a lot of deaf people with the exception of a few ASL extremists. And, to be clear, I don’t subscribe to d/D either.

    I find it curious that a hearing person such as Lane would claim to know everything about the deaf world, how could he? Exactly whom did he observe? Where? And, the fact that I and several DOD would even disagree with him should mean something.

    And, my curiosity is piqued, from your article as well as Lane’s.

    In good time, I will write a post on ASL and maybe cover this ethnicity as it relates to deaf culture. My opinions are based on my observation which is part of my upbringing being around deaf people in mainstream America which is very different than those on Gallaludet campus. To be clear, when I say deaf culture, I look at behavioral norms that are part of the deaf way of life, but do not see it as ethnic in nature. I have my own ethnicity and it has nothing to do with my hearing loss.

  288. Candy
    Dec 07, 2010 @ 23:38:24

    Patti..

    The fact that there are other scholars arguing Lane, Stokoe, and other like-minded scholars indicates that nothing is absolute in these areas. All of this is debatable.

    Because I plan to blog about this, it’s probably best if I stop.

  289. mcconnell
    Dec 08, 2010 @ 00:44:00

    Ann, what you said,

    “A hearing aid wearer is as d-e-a-f as any of us, when the aid is removed.”

    It’s true for CI but not necessarily for those who wear hearing aids. There are hearing aids for people with mild to severe/profound hearing lost. For me, I take off my hearing aid, I can still use the phone to make voice calls to listen and speak. I can still hear (and understand) the tv if the volume is sufficiently turned up and I sit close to it. My FIL has a mild hearing loss and wears a hearing aid. He can still hear without it but it would require everything to be a tiny bit louder but can use the phone, etc, without it.

    For me, I don’t equate those who use hearing aids with great benefits as being the same with other people with hearing loss who cannot use a hearing aid as one and the same in terms of how much hearing loss each of us have. .

    Perhaps explain “as d-e-a-f as any of us” on exactly what you meant?

  290. Candy
    Dec 08, 2010 @ 01:14:19

    One more thing, Deafnicity…

    I’d like to read the rest of that article. If I go to one of the UW system library, would it be available for me to view? I don’t subscribe to the Journal of Deaf Studies – but would If I could.

    Also, I can’t help but wonder, do you, as part of your journalistic writings, observe deaf kids from WSD?

  291. Candy
    Dec 08, 2010 @ 01:26:31

    And, one more thing Deafnicity…

    Do you still have dismal view on CI? Interesting stuffs I found online, apparently deafnicity has a habit of calling people he dislikes ‘apologists’ and I guess he was accused of (not sure how many times that has happened) of having ‘militant’ view.

    I also found some interesting stuffs about ‘ethnie’ as it relates to deafhood. I think it has something to do with last chance effort to save deaf culture as we know it cuz it is evolving. Oh yeah, evolving big time.

    This is why there are ‘scholars’ out there making every attempt to paint the deaf community as peole with real language, real culture, etc.

    And, oh, let’s not forget genocide argument these extremists tend to use.

    See where I’m going with this?

  292. Ann_C
    Dec 08, 2010 @ 02:07:12

    Sorry, Mike, I was thinking of profoundly deaf, whether they use CI’s or HA’s. That’s my experience I was speaking of, can’t hear the TV or talk on the phone without a HA. And most CI recipients have to be in the profoundly deaf range to qualify for such technology. Didn’t mean to lump all HOH as deaf. However, I call myself HOH to hearing ppl because they don’t grasp what deaf really means. If I say I’m deaf, hearing ppl assume I know sign language fluently– I don’t, and in the meantime I’m talking to them, duh.

  293. Candy
    Dec 08, 2010 @ 02:16:50

    Ann_C…

    Don’t forget, there are now many deaf people who recently got CI had some residual hearing before the surgery – still have that hearing intact. This is evidenced in how amazing CI technology has come this far. It will get better, much better in the years to come.

    I think I told you once that I could still hear without my hearing aid, can even use the phone with amplifier in my good ear. Told myself you knew that… duh. ;o)

  294. handeyes
    Dec 08, 2010 @ 02:48:10

    oh my goodness candy –

    acting a bit trollish here aint ya?

    remember that little proverb:
    “Great people talk about ideas.
    Average people talk about things.
    Small people talk about other people.”

    i looked up what apologist means as a term and this is what i got:
    n. a person who offers a defence by argument

    kinda interesting

    i think u may have answered Deafnicity’s question re: his “If you seek to…” statement

    too bad – i have been trying awfully hard to get folks to stick to da point and concepts / constructs / ideas / questions but instead u go hopscotching all over the www trying to dredge up dirt and name calling and falsehoods to drag in here

    aint u out of ur hot air yet?

    nah seems not

    another thing that is a bit odd is how in the morning ur kinda chummy and friendly and then in the evening u get all vengeful like

    yikes and gosh and grrr

    and ….

    yawn! pardon me – i am sleepy

    yes yes i know ull be back for another quip

    i got ur number girl

    i see how u spin it and i see how u like to have the last last last word

    no worries i know another chap like that

    this thread got > 250 views today before u showed up to try to bash / malign / implicate Deafnicity in ur Deafhood conspiracy

    since this particular blog entry went up there has been a total of 3,000 views so it can’t all just be folks looking for the cat fight or who is throwing what name at whom – i wager it is some folks who are actually interested in the Advanced Bionic recall and the hot failures and Sovana shares shaking up and the AG Bell Association Circle Alliance Founding Partnership with two major CI co. that have been fined, had recalls, or engaged in unethical dealings

    some folks who are actually READING and ABSORBING the comments are actually interested in some of the I D E A S being discussed here

    so good night Irene, good night Irene – i wont see u in my dreams but im sure ill see u soon

    i know i know that is debatable ; )

    much peace

    patti

  295. Ann_C
    Dec 08, 2010 @ 02:55:36

    Candy,

    You told me that you can hear on the phone with an amplifier without a HA in your good ear? And you’re considering a CI for the bad ear? Hmmm, your bad ear is in what range of hearing loss?

    A~

  296. Candy
    Dec 08, 2010 @ 03:38:58

    Frequency varies around 85-95 db used to be 65-75 db.

  297. finlake
    Dec 08, 2010 @ 03:40:07

    Hmm, I got a friend who lost her residual hearing after CI was installed. She said that doctor doesn’t really “care” for residual hearing, but she wanted the CI nevertheless.

  298. Candy
    Dec 08, 2010 @ 03:43:52

    Patti…

    Had you and I been talking in person, Deafnicity included, I don’t think you or he’d find my comment offensive. Words are easily misunderstood without the nonverbal cues. 😉

    I found his constant use of “apologist” interesting. Maybe it’s his catch phrase or whatever. Typically Theologist tend to use that word often. Interesting choice of word to use in deaf politics.

  299. Candy
    Dec 08, 2010 @ 03:51:41

    The Nucleus Freedom implant features the Contour Advance™ electrode, a self-curling electrode array that allows the electrodes to be placed close to the hearing nerve for targeted stimulation and increased power efficiency, while applying minimal pressure on the cochlear structures. The Contour Advance is the only electrode array designed to protect cochlear structures during surgery, which leading medical professionals say is essential in preserving residual hearing.

    http://products.cochlearamericas.com/news/fda-approves-nucleus-freedom-us

  300. Candy
    Dec 08, 2010 @ 03:56:46

    Retention of residual hearing isn’t always possible for everyone. But, it is possible in some cases.

  301. Candy
    Dec 08, 2010 @ 04:00:28

  302. deafnicity
    Dec 08, 2010 @ 04:06:16

    Candy,

    I’ve read your posts several times to try to figure out exactly what you are arguing. I must admit I see your opinions to be as irrelevant as mine. I prefer facts. I prefer models that have had their theoretical foundations subjected to review by other scholars. That informs me that the author – including myself – has not dirfted off into lala land coming to believe their writings are better than they actually are.

    Joseph posted a quote from my article. I suggest you read it before throwing out opinions about a subject that is is apparent you know so little about. The primary problem with the postdeaf hypothesis is that it isn’t post at all. It is filled with misunderstandings that I document in my article. Not only does the postdeaf hypothesis involve an ahistorical understanding of the concept of ethnicity — it assumes the change it advocates is not already there. It argues that the concept of ethnicity is outdated. BUT it uses an outdated understanding of ethnicity to argue a point that ethnicity is outdated. Follow that?

    The postdeaf hypothesis also argues against binary oppositiions to discredit binary oppositions — silly. Yet, if the postdeaf apologists would update their understanding of ethnicity they would see that there is no binary identity to oppose at all. This is what I was saying in the quote from my article that Joseph posted. Davis’ idea of postdeafness fails to account for the theoretical advancements that have occured in the study of race and ethnicity. He grabbed at criticisms that have been circulated about the concept of ethnicity without checking to see if those issues have already been resolved. In other words he offered a hypothesis without doing his homework. Fernandes and Myers then uncritically echoed Davis’ views.

    The point is a person does not need to limit themself to being deaf or Deaf. They don’t have to trash choices of others in order to elevate their own sense of self. Doing so only expresses an insecure self. You want to be deaf and insist their is no ethnicity or Deaf — go for it. Your choice. But understand that if you ant to play games by mispelling a word and assume that it is rhetorically effective — well go for that too.

    On the other hand it is reasonable for me to ask whether it is possible to be both deaf and Deaf. Sure. Why not? I can be Ojibwe around Ojibwe and Deaf around Deaf. I can be deaf when I sit in that audiological refrigerator they call a sound booth. Why not? I don’t get my ears checked to be Deaf and I didn’t learn sign to see what what my pure tone averages are.

    So I ask you again whether your views on ethnicity are based on some scholarship or whether it is simply your personal opinion. If it is scholarship – please inform of the sources and I will be happy to discuss it with you further.

    Time to go grade 100 essays before sunrise 🙂

  303. deafnicity
    Dec 08, 2010 @ 04:23:10

    oops– I said “The postdeaf hypothesis also argues against binary oppositiions to discredit binary oppositions — silly.”

    It should have read “The postdeaf hypothesis also uses binary oppositions to argue against binary oppositiions –— silly.”

  304. Candy
    Dec 08, 2010 @ 04:25:48

    Deafnicity..

    It is quite clear that my views are my opinions based on my experiences and observation in the deaf world. Never did I stated anything that would infer they are scholarly.

    I intend to read your article in full, soon.

    Your facts are still debatable. Even facts can be disputed with another fact.

    I’m not disregarding your views completely, I intend to look into it with an open mind. Or at least try to, to the best of my ability.

    If you understand the true definition of d/D and how that evolved over the years, you might understand why I have this view. Is it possible to be deaf and Deaf? In the eyes of others, maybe. But, honestly I don’t bother with it. I’m seen as Deaf by many who knows me well. My views here certainly does not put me in the Deaf category.

  305. Candy
    Dec 08, 2010 @ 04:30:59

    However when you get into the area about being deaf in an audiology booth and then when you don’t get your ears checked, you’re Deaf, seems kind of silly to me.

    So, if we do things that are not deaf-like, we’re deaf and if we do things that are deaf-like, we’re Deaf?

    And, that has to do with ethnicity as far as accepted behaviorial norms goes? Commonality?

    Know that I do see deaf people having a culture, only I don’t see it as an ethnic culture.

    I guess I need to read your article. 😉

  306. Dianrez
    Dec 08, 2010 @ 04:50:34

    It requires quite a deep understanding of scholarly concepts to get into Deafnicity’s arguments. Not something I would argue unless I were equally well-read of the field’s dissertations and researched facts.

    To me, the concept of ethnic deaf is important because of its implications in teaching and guiding young Deaf people to a greater appreciation of themselves as worthy people–not lesser or disadvantaged people, but valuable in themselves and in what they can contribute to the world. That is, equal in depth and breadth and value as any ethnic group.

    That’s why it upsets me that some people deny the idea that being culturally Deaf or ethnically Deaf is possible. To me, it takes away an important part of nurturing a person that has a lifelong hearing problem and teaches him to be a disabled member of society, that his friends are also lesser people and need to be buttressed with hearing aids, etc. before they can be accepted.

    It teaches him that Hearing standards are more valid than any he could reach himself. It is a shortsighted and selfish way to think–i.e. if I can hear, that makes me more Hearing-like. It makes me a more effective person than other Deaf people. Maybe that’s not what they mean, but that’s how people see them coming from.

    It is also a valuable concept for parents to be exposed to. Teaching the parent that their child is not disabled, but a living, breathing new human being with a world of experience to offer and appreciate. Whatever that experience is, whether it be a world of audiologists and sound booths and dedicated speech therapists and newfangled devices, or a world of living, breathing, signing and visually experienced people and including the other people also experiencing this.

    In short, the cultural/ethnic model is a psychologically and sociologically healthier model than the more limited medical model. Not to exclude one or the other, combine them if you will. But the medical model alone is like kissing without the love.

  307. Candy
    Dec 08, 2010 @ 04:56:32

    Easy for you to say that Dianrez.. you can’t presume to know what most parents are thinking when it comes to their desire in wanting their child to have a healthy view of themselves. I believe that is probably one of the several reasons why they opt for CI. However, I’d be coming close to presuming myself. Probably best to leave that to the parents and let them speak for themselves.

  308. Candy
    Dec 08, 2010 @ 05:08:33

    It would also seem to me that this culturally ethnic model would mean hearing aids are a no no because it would make a child deaf rather than Deaf. And, if that is the case, I can easily argue that because I’m as Deaf as they come. And, going to the audiologist does not even make any one of us less than Deaf, not even for the duration we are there. This kind of view is quite extreme in my opinion. And, fits well with deafhood ideology. Something I am not comfortable with because it does not address accepting the diverse deaf population. I think the focus has to be on the parent and the community, for us to create better attitudes about deaf people by various means. All this ethnicity of deaf, do you really think? will help foster a better view of deaf people by the rest of the world simply by saying deaf people are an ethnically cultural group? I really doubt that. Certain ‘other’ ethnic groups don’t fare well. If you’re looking at ONLY the child’s healthy view of self, maybe but, society? nah. I Doubt it would make much difference.

  309. Dianrez
    Dec 08, 2010 @ 06:12:01

    Candy, nowhere did anybody supporting an ethnic or cultural view of deaf people say that aids or CIs were excluded. Also, level of hearing is not important. We accept culturally Deaf HOH people, as you have called yourself.

    The attitude that aids make one closer to normal is not present in Deaf culture, true. Instead, aids are seen as an optional accessory. It is not as important to the culturally Deaf person as it is to a Hearing parent raising a mainstreamed child, for example. The two concepts are totally different. To one, it is just another accessory. To the other, it is a vital part of daily life and there is even an attitude around it.

    Deaf culture or ethnicity is independent of CIs, hearing aids, hearing level or even identification with hearing people. One can be a member of a hearing family and still be culturally Deaf. One can be bicultural–be both a (disabled) Hearing person and culturally Deaf. They are not mutually exclusive, though involve different experiences.

    There are HOH and deaf people who prefer to identify with Hearing society and disavow any connection with Deaf culture. That’s their choice and perhaps also their upbringing.

    Let live and live…it is when they come to the culturally Deaf and disparage them, their lifestyle or their philosophy that creates a division, AGBell style. Likewise, some culturally Deaf disparage the HOH or deaf people that they know. My theory is it is because of clashes that happened in the past.

    A HOH might have felt excluded in a Deaf school. A teacher might have unthoughtfully favored a speech-talented child in front of others. Such examples exacerbate the divide and confuses the child that falls in between…leading him to think the two sides are mutually exclusive. Such experiences when young tend to color attitudes in adulthood.

    People who fight the cultural model for various reasons might be confused about their own identification, (not meaning present company.) I’ve seen them stand before Deaf groups and talk, using an interpreter even though they can also use ASL well. I’ve seen them defend the CI when the situation didn’t warrant it. I’ve seen them behave like Hearing people who are unaware of how to behave in Deaf groups.

    There are two sides to every situation, and Deaf people get blamed for much of this divide, too. However, flexibility, sensitivity and willingness to accommodate one another is a sign of a healthy society that celebrates its diversity. Culturally Deaf people have much to teach others, especially Hearing parents.

  310. deafnicity
    Dec 08, 2010 @ 13:07:49

    Cabdy, I don’t agree with d/Deaf label. No matter what the intentions of the author who coined it, It has taken on a life of its own that oversimplifies a complex set of relations. My concern is refelcted in the title of my article where I use D/deaf instead of d/Deaf. The Deaf population is a part of the larger deaf population – a fraction of. It is also consistent with the multiple social identities. One can be deaf and Deaf. It doesn’t mean a person has to be one or the other. Just the opposite. It means that some will belong and some won’t. One’s choice to not belong to an ethnic population does not make them right or wrong. But neither does one choice to be a member of an ethnic population. You argue that you are ot Deaf. Well ok, but that does not mean I am not Deaf.

  311. deafnicity
    Dec 08, 2010 @ 13:19:42

    Cabdy asks wheth an ethnic concept will help foster a better view of Deaf? This is an excellent question. Davis fears that some will use it as an excuse to diminish ADA. I see it differently. Conducting empirical studies that identities the Deaf community as a distinct ethnic population opens provides a basis to understand the dynamics of audism and that colonialism is more than a metaphor. This is of course why postdeaf apologists are against the idea of Deaf ethnicity — if the Deaf population is an ethnic population then dismissal of audism is more difficult.

  312. Deafnicity
    Dec 08, 2010 @ 16:03:48

    Cabdy wrote – “It would also seem to me that this culturally ethnic model would mean hearing aids are a no no because it would make a child deaf rather than Deaf.” Again, you assume that a person cannot be deaf and Deaf. Using a hearing aid doesn’t make one deaf unless the booming increase actually destroys cochlea hairs. Seems to be an increase belief in that – but I have yet to see empirical articles supporting that idea. What does seem to be an acknowledgement of hearing aids damaging cochlea is the redirection of their research emphasis in the 1970’s designed to compress sudden outbursts in sound, a fire engine for example.

    Back to the point of being deaf and Deaf. It is sort of like a square is a rectangle but not all rectangles are squares. Those who are Deaf are deaf also. Those who are deaf may or may not be Deaf. While their is an ethnic option to be Deaf or not, there are also some constraining influences on that. difficult to be Deaf without ever meeting other Deaf or learning sign language. Being deaf does not require meeting or associating with any other deaf folks. It is a medical circumstance, a label about physical traits. what is really odd about the dismissal of the concept of Deaf ethnic models is dependence on physical traits — which is what race is about. There are problems though with audiological definitions. The definitions are arbitrary, chance over time, and socially vary by location. Each of these are problems that the cocncept of race has. Postdeaf apologists such as Davis dismiss the idea of race and then apparently unknown to them they embrace racial arguments of deaf — except that they claim it is just one generation thick.

    What is likely is that a deaf person wearing hearing aids may find them to partially assist them in detecting sound ({this is different than comprehending speech) and possibly some measureable increase in speech comprehension. However, the age of onset, severity, and cause of deafness are roll of the dice. Idiosyncracies produce so many anomalies that it is difficult to fine precise utility in the aduiological classification schemes as a person with a moderate hearing loss may be unable to communicate over the phone while a person with a severe hearing loss can. does the hearing aid of a deaf person who orders a pizza over the phone make them non-Deaf? Depends what they do when they are not ordering pizza. Is their focus on the Deaf community? Hopefully people do not anchor their identity in a terchnology as the technology will change. My mother was HoH 1930s then deaf 1940s then HoH 1950s , deaf again in 1960s, hoh again in late 70s, deaf again in early 1990s, then HoH again in this century. At least that is what happens if one measures their identity based on speech perception in a world of rapidly changing technologies. Of course it is possible that she was deaf all along, but just didn’t view herself that way.

  313. Candy
    Dec 08, 2010 @ 17:17:45

    Deafnicity..

    I think first, you need to tell me why and how you have reach the conclusion that the deaf community (ASL signing community) is an ethnic culture.

    (need to get back to the grind..but, will be back later..)

  314. Deafnicity
    Dec 08, 2010 @ 17:38:01

    Cabdy – First it is necessary to understand what ethnicity is before coming to a conclusion of whether the Deaf community exhibits the characteristics of an ethnic community. This is why my article begins with a historical perspective of how the term evolved in the 20th century. There is no modern equivelent to the term ethnos so Anthony Smith combined approximately 10 different “types” of ethnos and framed them with the French concept of ethnie. There are specific characteristics of those types. Lane found those characterisitcs in the Deaf community using historical comparative methods. I found those characteristics using historical comparative, qualitative, and quantitative methods. However, much I could identity the characteristics I could not take the leap and argue that the characteristics explained audism experienced by the Deaf community. The problem was that ethnie did not accomodate such a leap in logic. Hence, I went back to the Greek and in conultations with linguists at the University of Athens examined application of the prerequisites of ethnos to the Deaf community. Once you read my article I would be willing to answer your specific questions. Your general question of how did I come to the conclusion – that would require reading my dissertation which does does provide empirical data. I resisted using complex statistical techniques and kept most of the analysis to percentages, though I did use chi squares techniques to test the significance of some cross tabulations. The model in my more recent article is a precusor to attmepting to use structural equation modeling to support the idea that Deaf are an ethnic population. Hope this helps.

  315. mcconnell
    Dec 08, 2010 @ 17:54:36

    Deafnicity, why the continual typing of the name “Candy” as “Cabdy” five different times starting yesterday whenever you address to Candy?

  316. Deafnicity
    Dec 08, 2010 @ 17:57:38

    mcconnell – because I noticed that she had problem with spelling audism and I wanted to make a point of how silly it is to put an x in the middle of that word. thanks for asking.

  317. mcconnell
    Dec 08, 2010 @ 18:10:46

    I figured that was why. But your addressing Candy who is a real person and not a concept or an ideology as “Cabdy” in the effort to get back at her for saying “avdism” is peurile. She has her own reasons and opinion for saying “avdism” just as I would if I choose to say “avdism” as well.

    I always address the person by his or her name whether it’s a screen name or a real name when it comes to online discussion. Twisting or changing the person’s name in the effort to mock the person continuously is akin to name calling at every turn. Doing so means that you are not interested in discussing the issue but instead would rather at first bat mock her at every turn in the beginning of a discussion by calling her as “Cabdy” and not the appropriate name “Candy.”

    I don’t see her changing your screen name even though she may disagree with what you have opined or said.

  318. Dianrez
    Dec 08, 2010 @ 18:37:18

    McConnell, point taken about deliberate misspelling directed at a person instead of at a concept. However:

    Another point needs to be made. Deliberate misspelling of audism to minimize it is as offensive as misspelling a person’s name. People who have been hurt by audism don’t appreciate their experience being ridiculed.

    So, no more misspellings either of names or audism. If you don’t like the word, simply don’t use it.

  319. Candy
    Dec 08, 2010 @ 19:24:39

    Deafnicity said:

    “But understand that if you ant to play games by mispelling a word and assume that it is rhetorically effective — well go for that too.”

    He assumes too much. And, he decided to do the same with my online handle, thus playing games with me. I am not playing games when I type axdism. There is a logical reason for that. Axdism has been abused to a point where it is being used as a weapon against deaf people online. By typing axdism,I am making my point known. It’s not even a game.

    Since he chooses to do that, he is disrespecting me, which I already took note of the first time he chose to spell my name incorrectly. I think he is trying to discredit me. How can he discredit my experience being born into and living in the deaf world? Observation I have are at best, observational empirical data. Hands on experiences counts for a lot. I also took note of what he said about my post. What he failed to do is to specifically point to which posts he feels are not factual because not all my post are about facts. Some are and some are opinions which is clearly outlined in my posts. Stuffs about AB2072, what I share clearly indicates which are facts and which are opinions.

    I now have his article at my disposal and will read it when I have free time.

    I do not see deaf culture as a ethnic culture and I have my reasons for it.

    I do not see ASL as a true language. It is a language, alright, as is many other forms when communicating with others. I do not see ASL as having a structure. That, I intend to explain when I have free time. I know this is unfortunate, I wish I had so much time to do a post right now.

    These are observations I have had since I was young enough to understand English and I have always been intrigued with how deaf people structure their language. I can absoulutely show how Stokoe is wrong.

    If Richard Clark Eckert chooses to disrespect me by playing games in the process of spelling Cabdy instead of Candy, so be it. This reflects more on him. A professor who is being childish with a simple blogger.

    I agree, I have never spelled anyone’s name differently even when I don’t agree them.

    Then of course, I have to ask myself, is Richard Clark Eckert really worth listening to?

    Is he really all about seeking facts and truths or is he out to play games?

    If anything, I question his credibility due to his immature behavior as a professor of academia.

  320. mcconnell
    Dec 08, 2010 @ 19:38:47

    Dianrez,

    People have their reasons just as Candy has her reason for spellling it differently. It’s apple and oranges when a person deliberately mispells a person’s name just to get “back at him” versus a concept. It certainly does not make a discussion a benign one.

  321. Ann_C
    Dec 08, 2010 @ 19:58:54

    Y’all, stick to “great minds discuss ideas”.

    This name mis-spelling brings into question whether Mr. Eckert intends to focus on the issues brought here or on a person.

    Secondly I agree with some ppl who believe audism has been overused and abused here as a form of bullying online to the point it has lost its significance. I prefer “discrimination against the deaf” to that word. Many hearing ppl understand the word discrimination well enough. How much more hair-splitting of a concept do we really need?

  322. handeyes
    Dec 08, 2010 @ 20:01:30

    wow

    in just 24 hours folks derailed the discussion from an indepth and insighful examination of ethnicity into the realm of the ever popular –

    “lets argue over the height of a letter” game

    your spin

    nah me not playing – been there done that

    im more interested in arguing about the last letter in the word DEAF – is a F or a D ?

    then they derailed it to be about spelling and incorrect spelling

    and now we are even discussing fruit – ha! how we use our time

    dysfunctional discourse anyone?

    i know i know – it’s debatable ; )

    anybody care to discuss CIs the industry the system the shares the stakeholders and the association that partners with CIs co. that have been fined for unethical wrongdoings or faulty products (ya know the tippy tippy top blog that started it all)

    if u all r into games perhaps we can play the game – can we not lower ourselves to the bait

    i know it is mighty hard but just skip over those comments and talk to the good folks – the folks who care and the folks who are open and want to learn and think and question and love

    today is the last night of hanukah –

    this little light of mine – im gonna let it shine… oh this little light of mine … im gonna let it shine

    Eighth Candle: The eighth light is the light of courage. When truth and justice clothe a person’s soul, that person is unafraid. Judah Maccabee, the hero of Chanukah, lived by these words: “Be strong and of good courage.”

    peace

    patti

  323. Deafnicity
    Dec 08, 2010 @ 20:40:09

    Look – Joseph posted a quote from my article. If people want to discuss the content of that I am happy to do so.

    Mispelling her name was not an issue of vindictiveness. The purpose was to make a point of just how silly it is to intentionally mispell the term audism. I would love to move on to discussing the idea of multiple social identities and hence will retreat from this distraction. However, I must first clarify a few things. The argument has been made that Candy is a person whereas audism is an ideology. I don’t agree with that interpretation. Audism is an ideology and a PRACTICE. The practice of audism affects millions of people in very real and very harmful ways. More importantly, I know audism much better than I know Candy.

    I am far more concerned about the postdeaf apologist assumptions that dispute the merits of colonial models, audism, and ethnicity. Why not return to the idea of discussing whether multiple social identities is possible? If it is possible, the postdeaf objections to medical versus cultural as a divisive and binary strategy is easily shown to be in error. There is no reason a person cannot be both Deaf and deaf. It seems a square can be a rectangle afterall.

  324. handeyes
    Dec 08, 2010 @ 20:42:42

    re: Ann_c (ur comment came in while i was typing up mine above)

    i’m noticing folks have begun targeting Deafnicity by using his real name repeatedly and by omitting his proper title Dr

    yes i know his name is revealed under the quote from the article but in this thread the screen name is Deafnicity

    Ann_c – ill assume u r just springing off of mike’s comment and not really seeing how this has migrated

    i hope u can see it now

    IDEAS were put on the table but folks have scapegoated things

    u can make it worse or u can try to set us back on target

    i respect ur preference to use “discrimination against Deaf people” instead of the word audism

    i hope u will respect my preference for using the term audism APPROPRIATELY

    i do NOT support it being abused, misused, or disused by both ends of the spectrum

    i am of the mind that knowledge is power and there is no empowerment to be had by refusing to use a word CORRECTLY because some folks use it incorrectly

    in fact there is no logic in that stance either

    to go even further and repeatedly insist on misspelling it – well that speaks volumes also

    the TRUTH and FACTS of the matter are that:

    Deaf folks do experience discrimination – dont matter if they go by wee d or big D or hard of hearing or hearing impaired or late deafened or newly deafened or “can’t hear me” or “signing person” or any ole name u choose – they do experience discrimination

    especially in the employment sector

    largely due to ignorance more than overt oppression and hatred

    other disenfranchised groups have been given words for their discrimination – racism, sexism, antisemitism

    some folks are of the mind that Deaf folks should have the “spiritual audacity to assert their somebodyness” and have a word of their own too – even a couple of words

    if u prefer to use a phrase instead of a word – i aint got no problem with that

    if u prefer to constantly misspell the word and misrepresent it – i got a problem with that

    knowledge is power

    verity is clarity

    much peace

    patti

  325. handeyes
    Dec 08, 2010 @ 20:49:45

    Hi Deafnicity

    ur comment came in while i was typing to Ann_c

    these r some questions i have (see below) and im wondering if u can clarify postdeaf apologist term cuz i think right now its coming off as name calling to some folks who are unfamiliar with various “apologists” fields / groups and if u can think of another term that might be more familiar but less charged pls consider

    u have noted three sets that are often interreated and not mutually exclusive – when u discuss disability – is it as a cultural construct?

    Have u read Baynton’s writings on this subject – Beyond Culture in the Open Your Eyes reader and Deaf Studies Kaleidoscope conference proceedings

    Baynton also examines nature / natural and normalcy in depth in his book Forbidden Signs: American Culture and the Campaign Against Sign Language as does Damned for Their Difference: The Cultural Construction of Deaf People as Disabled by Branson and Miller (UK focus but mentions the US situation)

    social darwinism being a big part of it

    those text are in depth historical analysis of facts

    it seems to me ur work and Lane’s latest (with Pillard and Hedberg) are theoretical frameworks with statistical data and analysis to support it

    I have not “read” this paper which is in International sign language but it might have some bearing or be of some interest – Hilde Haualand “Sound and Belonging” in the Deaf Studies Digital Journal Volume I http://dsdj.gallaudet.edu/index.php?issue=1

    peace

    patti

  326. Ann_C
    Dec 08, 2010 @ 21:24:33

    patti,

    Deafnicity’s real name is revealed in the excerpt that Joseph quoted in his comment. I was not making fun of his name or title, as I was not aware of his Dr. title until you brought it up. I believe that jpr wanted to make sure that Deafnicity got due credit, by mentioning the author’s name, for the cite he included.

    Name handle, got your point.

  327. Deafnicity
    Dec 08, 2010 @ 21:25:57

    No problem with saying postdeaf advocates? Apologist s somewhat of an archaic term today, but it concerns defending a proposition or theory. One could easily call people Deafhood apologists without being derogatory at all. But I can see that it might disturbs some unfamiliar with the meaning of the term. The term “Postdeaf” is based on Davis’ hypothesis first published in the Chronicle of Higher Ed and then modified for OPEN YOUR EYES. I can’t criticize it enough. In fact my article does that quite a bit so need to repeat it here.

    The three interrelated communities of origin, language and culture work together, but they are not weighted equally or homgenous. Some ethnic populations may emphasize one more than the other. i was simply trying to state the limitations of the idea. The cultural construct part? I don’t know – my brain was thinking of Kant and how much of his work is often translated into a “manifold of understanding.” So I was envisioning ethnicity a manifold or funnel or nexus of communities. When I described that concept of ethnicity on Deaf Academics I got a response from a gentleman affiliated with University of Athens who then informed me of how much my model lined up with the classical Greek concept of ethnos. In that context each of the three prerequisites would be cultural constructs. Isocrates that I quote in my article gives indications of differences of opinion in classical Greece over whether a person had to be Greek by blood or by education. This was important in dishing the idea that Deaf ethnicity is one generation thick as ethnicity is not dependent upon physical traits.

    I was complicating it further by drifting off into being caught between the idea of applying a regression statistical model to test the theory or a structural equation model. The model is more like a regression model except it does not include the beta error accountability yet. I also put multiplication signs between the communities in the model to show that “stuff.” SO I can tell you what I was thinking on it when I designed it, but I leave it to others to examine the cultural construct. I see ethnicity as a set of relations that are transformative, not static — so I can’t pin myself down — sorry. wow good question!

    Baynton – I ran out of room and wasn’t ready to ready a companion article 🙂 His interpretation of cultural converts was noted in the article as it is important to note the varied ways in which people enter the Deaf community. Forbidden Signs is on my reading to list. I did read his article in OPEN YOUR EYES.

    Gotta grade some tests

    For those wondering why I use the name Deafnicity — I saw some names on the list like Sweetmind that I haven’t seen on the internet in near ten years and the point was to use the name that those individuals might remember me BEFORE I got the Ph.D. There was not intention of hiding who I am.

  328. Dianrez
    Dec 08, 2010 @ 22:12:13

    Fascinating. So we have another social theory to put up beside Dr. Paddy Ladd’s Deafhood. All the better, thanks Deafnicity. Social theories are frameworks to put what we know into and see if we can understand what goes on in humanity a little better.

    Why people should get their dander up and dispute them is unfortunate. Especially when one has a body of research and data to back it up and the other is a layman with just individual and personal experience to back hers.

    However, that is the privilege of blogland. Anybody can say anything even without cites or evidence and publish it for all the world and posterity.

    In scholarly research however, any work is peer reviewed and subject to re-validation by other researchers. Cites are used to show background and history, and to support conclusions. Data is gathered from carefully designed research and tested for validity and significance.

    We look to theorists, scholars and researchers for answers or suggestions how we might understand issues in the d/Deaf community. (I’m not implying anything by the order of caps.) Again, these answers must stand the test of time and use.

    Candy, I don’t know if you are in the field of human services or work in government or something unrelated to people. There’s a chance that the work of these researchers and others in the future may benefit you personally or simply provide material to blog against. Either way, it’ll keep the human dynamics going–people thinking. For my part, it would be nice for my coworkers in a Hearing environment to view me as an interesting, ethnic person to experience and share things with. I kinda get tired of feeling like the token disabled worker.
    ***
    Wow, Patti, you have to close this thread. Not only did it run all over the place, it’s so long that it now takes five minutes to reload on my computer. And there’s about 20 concepts here each deserving its own blog.

  329. Ann_C
    Dec 08, 2010 @ 23:35:33

    dianrez,

    We should not only look to theorists, scholars and researchers for answers leading to D/deaf issues, but also to the open dialogue among the D/deaf themselves, regardless of education and viewpoints. It is, after all, our lived experience upon which the scholars base their answers.

    That combination gets us all thinking…

    And going in 20 different directions, lol.

    But sometimes going off tangent can provide a forum for new ideas. Which is what is happening here.

    Oh, yeah, the comment section takes forever to load.

  330. mcconnell
    Dec 09, 2010 @ 00:58:59

    Deafnicity, I am aware of the discrimination against deaf and hard of hearing people based on their ability to hear. Assigning a new label doesn’t solve anything when people purposely misuse it to no end.

    People who see you mispell Candy’s screen name might write it off as you having a fat finger, typing too fast, or case of dyslexia. Or whatever not familiar with what’s going on. Others might see it as your way of “getting back at her” as being”vindictive” just because she refused to spell out avdism correctly. And that bugs you to no end. Others may see it as a puerile behavior to purposely mispell a person’s name instead of agreeing to disagree and move on. Not that I care but I’m noticing a downward step you’re advocating. She has her reasons for spelling it that way and has already explained why.

  331. mcconnell
    Dec 09, 2010 @ 01:00:59

    Correction:

    Deafnicity, I am aware of the discrimination against deaf and hard of hearing people based on the ability to hear.

    changed “their” to “the ability to hear”

  332. John S.
    Dec 09, 2010 @ 01:07:07

    Deafnicity,

    Or should I address you as “Great Lakes”? Either way, the point you make about not trashing one’s choice of identity is well made. Indeed, should someone trash someone else’s choice of identity they are giving permission for this to be done to them. And then what do we have? Chaos. Further, it seems that those who wish to denigrate another’s choice of identification are mostly operating from the abstract. Should they choose to have a derogatory view of a specific ethnic group then they are only in a power game.

    One’s sense of self is constantly changing. Not necessarily in a profound manner. It may be that any means of identification of an individual may be subtly altered. As time goes by the identity is stronger yet it is always open to change. Especially with children who have yet to personally experience some of the identity forming experiences or phenomena. Thus, their identity may be more abstract than concrete.

    The question of being Deaf or deaf or D/deaf is a question of values and/or experiences. Should one have a strong part of their identity within the Deaf community then they would probably choose to identify themselves as Deaf. Should they either reject the Deaf identity or have a weak Deaf identity then they would probably identify themselves as deaf. Should they identify themselves with both the social/ethnic identity of Deaf *and* identify themselves as ‘deaf’ then they may choose the D/deaf identity. Persons with the ‘deaf’ identity would probably have a weaker identity in the Deaf community. That is, they may not sign nor involve themselves in a local Deaf club nor be involved online. There are those who oppose one’s choice of identity based on their own personal values and/or experiences. However, the manner in which one chooses to identify themselves is more important than the identity chosen by others.

    If you remember from old DeafNotes we discussed the concept of ethnic identity of Deaf. Both as a group within the larger group of human beings and a group unto itself. “D”eaf identity is similar to almost any other ethnic group except having a geographical basis. With the multiple factors that apply to ethnic identity I find it hard to believe that the lack of a geographical or political location as the almost solitary difference between groups is that important. To some it may be. However, this is selective perception in that they are denying all other factors in order to exclude an ethnic identity on the basis of *one* factor.

    Use of the term “apologists” may be appropriate should the word and its definition fit those engaging in this. “If the shoe fits…”
    The concepts of ‘community of origin’, ‘language’, and ‘culture’ are overlapping in that any one influences (but is not the sole influence) the others. Any one of these may be stronger than the others at any given point, and conversely, weaker at others. The importance I believe is that these all influence the others, and therefore, the individual. Can one reject this influence? Hardly; these influence the development of the individual from before birth until death. This influence early in one’s life is not by their conscious choice. This would include the rites and rituals such as mate selection. Agreed, ethnicity is not static.

  333. handeyes
    Dec 09, 2010 @ 03:12:01

    Deafnicity – thanks for all your answers – appreciate it very much. postdeaf advocates seems more agreeable a term. the postdeaf might still confuse some as its a new one but we all be learning here. Hope ur grading is not too horrible. I think ull enjoy the Forbidden Signs book and the Damned for Their Difference books

    will try to get to ur article during the break and look forward to reading the new Lane et al book when it arrives in the mail

    dianrez – aw ma do i gotta close the comments? smile – i know its long and wandering but this may be the nature of folks who are scattered to the wind and living in diaspora eh – to kinda be long and wandering?

    i think ill let it run its course until it comes to an organic end

    i do apologize that it is dragging down ur computer – i hope it continues to be worth the load lag time

    at least it seems we r back on track of discussing ideas and concepts – for the most part

    i appreciate ur comment about the value of scholarly investigations in this realm and how an ethnic identity is very useful

    its interesting to note that Veditz way back when identified Deaf folks as a CLASS and a COMMUNITY of INTEREST

    he didnt use the word culture or ethnicity because those were not commonly used terms of that time period

    he also had something akin to citizens of the world type of thing but i dont remember the exact wording

    Ann_c – thanks for ur comments and definitely folks life experiences are valuable and important. this is one of the reasons why visual histories are so important – documenting folks life experiences. One of my favorite parts in Dr. Ladd’s book is the ethnographic interviews he conducted of Deaf folks.

    Padden and Humphries books include a great deal of Deaf folks’ stories as well

    mcconnell – he stated his reason and she stated her reason and the rest is debatable smile. i think they both have been clear and why they did what they did and hopefully we can be done with the mispelling game and talk about IDEAS and CONCEPTS

    John s – my goodness – a thinking man. wow that is mighty nice to see. thank u very much for contributing here

    now i dont know if u use ASL or any other natural sign language but i have been wondering about this question for several years now – yes im a turtle of a brain sometimes when i lock me sight on something and the question is – maybe part of the war of the words is that different folks want the word DEAF to mean different things and for different folks the word DEAF does mean different things

    so woodward came up with the d / D distinction as a tool to show a medical / pathological framework of deaf (cant hear / physical problem / should be fixed or assisted etc) and D to be a cultural / linguistic viewpoint

    which was important way back when cuz it got folks thinking about the difference but then when it came to employing the distinction in writing it was kind like hmmmm do we just talk purely of the medical or purely of the cultural or what of the grey area when its an unknown of which it is or when it is probably an overlap of both and….

    dang it got so mightily confusing

    so what i got to thinking was – what about a totally new term for folks who use natural sign language and what if this new term originated in a universal / international sign

    most nationalities and languages go by the same word

    i am japanese – i speak japanese

    i am french – i speak french

    i am German – i speak german

    i am Hebrew (not used as much now) – i speak Hebrew

    i am Navajo – i speak Navajo

    what if a new term was originated conceived of and agreed upon by the Deaf folks who use a natural sign language and see themselves as a cultural and linguistic minority – so they use this sign and then eventually they discuss a word for that sign

    the reason i thought this might be useful is that:
    1. it shifts folks from arguing about the height of one letter
    2. it shifts folks from thinking about a word that for the majority of the world will always mean “can’t hear” “deficit” “infirmity” “affliction” “impediment” etc
    3. it empowers natural sign language / cultural folks to name themselves much like Gays and Lesbians, African-Americans, Feminists have done and usually once the group coins a new term and they try it on and see how they like it and it spreads then the older terms that were originally stigmatized take on a positive meaning / connation as a result of the New term giving a new positive outlook

    this new term would not be to exclude people who do NOT want to self-identify culturally / linguistically as a minority group (or ethnically) – it would actually be present to allow them to have “deaf” as their marker with less confusion and tension

    of course some folks would go nuts to see a new term originate just cuz change is hard for some and newness is scary but it has been done by many groups before and if it dont work, dont take, or doesnt make it – it can easily be tossed

    never know till we try

    peace

    patti

  334. handeyes
    Dec 09, 2010 @ 03:23:55

    we also discussed American Sign Language a bit in this thread and i thought this article in USA Today might be of interest

    http://www.usatoday.com/news/education/2010-12-08-1Alanguages08_ST_N.htm

    It explains that ASL is rapidly increasing in popularity on college campuses. it is soon predicted to surpass German and become the 3rd most studied language

    Also the recent book Talking Hands: What Sign Language Reveals About the Mind by Margalit Fox covers in-depth in fairly lay man’s terms the natural sign language of the people of El-Sayed, a Bedouin village in Israel with a high percent of Deaf people.

    Dr. Carol Padden, the first ASL Deaf person to get a MacArthur genius award, is mentioned a great deal in the book as she is one of the researchers who studied the sign language and people of this community.

    peace

    patti

  335. Larry H
    Dec 09, 2010 @ 04:19:54

    Review of Harlan Lane’s The Mask of Benevolence (Tom Crews) April 15, 1996

    “The deaf believe that they are our equals in all respects. We should be generous and not destroy that illusion. But whatever they believe, deafness is an infirmity and we should repair it whether the person who has it is disturbed by it or not.” Harlan Lane uses this 1853 quote by a resident physician of the Paris school for deaf children to capture the audist medical view of the past and the present. Lane paints a bleak picture of deaf education in America and believes that the deaf have their own culture which should be allowed to flourish. Cochlear Implants would be the latest evidence of the hearing world’s attempt to treat deaf people as disabled instead of as a culture. Lane’s world for the deaf seems to include separation of deaf children from their parents into residential schools, emphasis of learning would be ASL (American Sign Language), and total rejection of hearing aids and cochlear implants. In fact one would almost believe that Lane would endorse total separation of the deaf from the hearing. The bottom line is that Lane and many other deaf people believe that being deaf is a condition that is not a handicap and any attempt to remedy that situation is like trying to fix something that is not broke.

    The deaf community believe that it is a linguistic minority, not disabled. They reject the premise that deafness is a tragic infirmity. They view themselves as visual people, with their own visual language, social organization, history, and mores. They believe they have their own way of being, their own language and culture. Lane admits that the deaf child faces many obstacles in life, but the lack of communication at home, inferior education in school, discrimination in employment, are obstacles placed in his way by hearing people who, if only they came to know the deaf community, could readily remove them.

    Deaf identity itself is highly valued; deaf people seem to agree that a hearing person can never fully acquire that identity and become a full-fledged member of the deaf community. Speech and thinking like a hearing person are negatively valued in deaf culture. Deaf people who adopt hearing values and look down on other deaf people are regarded as traitors. In the deaf community, to be called oral is unacceptable. This means you have made the wrong life choices, you have embraced values that place a premium on speech. According to a 1988 survey of deaf adults, two-thirds thought their social life was better than hearing people’s. An estimated nine out of ten members of the American deaf community marry other members of their cultural group. Deaf parents’ joy at the birth of a son or daughter is not commonly diminished by their finding that the child is deaf. Other characteristics of the deaf community is a penchant for group decision- making, mutual aid and reciprocity, and strong group loyalty. Members of the American deaf community are not isolated, or uncommunicative, or unintelligent, or childlike, or needy, or any of these things socity often imagines them to be.

    Most members of American deaf community are simply baffled when told they are disabled. Being called Hearing-Impaired instead of deaf was started by the audist establishment. Had the deaf community been asked about this they would have learned that “deaf” is not negatively valued – “hearing-impaired” is. “Deaf refers to shared culture, language, and experience; “hearing-impaired” seems to refer to a physical defect that someone outside deaf culture possesses.

    The hearing leadership of special education has maintained that the local school offers the least restrictive environment for deaf education; deaf people themselves think it is the most restrictive environment. Hearing authorities commonly view American Sign Language as a crutch, refuse to learn it, and discourage its use; the half million or more deaf Americans for who this is a primary language believe it is the equal of English as a natural language and clearly superior for instructing and communicating with deaf people.The residential schools for deaf children provided a vital link in the transmission of deaf culture and language, which is why the deaf community finds abhorrent the dismantling of the residential schools, while the disability lobby finds abhorrent segregated schooling of disabled children in special residential schools. Lane maintains that since nine out of ten deaf children will eventually be members of the American deaf community they have a unique birthright that requires some form of grouping. The residential schools of the past offered the ability to communicate with other human beings, to develop friendships, participate in student activities, emulate older students and deaf staff, and perhaps most importantly, acquire self-respect as a deaf person. None of these advantages are available to the deaf child in an ordinary public school, where ASL, deaf adults, and a deaf community are absent.

    Nearly sixty thousand of eighty thousand deaf children are now mainstreamed. Most deaf children are in schools where there are only one or two other deaf children. Think how difficult it must be for a deaf child to learn as he has to keep his eyes glued on the interpreter for long stretches while classroom events suit his hearing classmates: maps are unfurled, slides are projected, tables of numbers are displayed, and all the while the teacher talks, the interpreter (if provided) interprets, and the deaf child must never look away from the interpreter. Lane warns that immersed in a hearing, English-speaking environment, the deaf child frequently drowns in the mainstream.

    “I have experienced both, mainstream and deaf school,” eighth-grader Jesse Thomas testified to the National Council on Disabilities. He first explained, “I’m not disabled, just deaf,” and then gave his reasons for opposing mainstreaming: “Learning through an interpreter is very hard; it’s bad socially in the mainstream; you are always outnumbered; you don’t feel like it’s your school; you never know deaf adults; you don’t belong; you don’t feel comfortable as a deaf person.” By mainstreaming the deaf into local schools, the deaf child has been cut off from his deaf world, having blocked his communication with parents, peers, and teachers. The experts have disabled the deaf child as never before in American history according to Lane. The typical deaf child, born deaf or deafened before learning English, is utterly at a loss as he sits on the deaf bench in the hearing classroom.

    Lane finds that deaf children who do best in school, mainstream or residential, are the fortunate 10 percent who learned ASL as a native language from their deaf parents. Further, those deaf children who come to school with a knowledge of ASL are also better adjusted, better socialized, and have more positive attitudes than their counterparts who have been deprived of effective communication. The largest study to date in the United States found that the majority of Hispanic children who were taught to read Spanish before learning to read English learned later to read English quite well. Lane applies these findings to ASL-using children and concludes that instruction using the deaf child’s most fluent language would actually improve his or her performance in English. Lane agrees with those at Gallaudet University who advocate bilingual education for deaf children and that they should learn ASL early from deaf adults. This, their most fluent language, should be used as the primary language for instruction. English should be taught as a second language, using ASL and written texts for instruction. No child should be asked to understand speech and learn through speech at the same time.

    Lane argues that oral education of deaf students usually leads to class time designed for academic subjects being neglected in favor of language and speech remediation. Schools’ failure to teach deaf children to read is a disaster. Reading is a lifeline to knowledge and academic achievement for the deaf student more than for any other student. Lane summarizes “the superior performance of deaf children from deaf homes highlights the changes that most need to be made in the education of deaf children: namely, a return to manual language, deaf teachers, and deaf administrators directing residential schools – successful practices in the last century, when American deaf children studied all their subjects in their most fluent language, ASL.”

    Hearing professionals late in the last century banished traditional sign languages in favor of the national spoken languages. In 1985 in an American psychiatric publication it stated “Profound deafness that occurs prior to the acquisition of verbal language is socially and psychiatrically devastating.” Lane concludes that because nearly all deaf children today became deaf before they could learn English, and most are labled profoundly deaf, that would make most deaf children “psychiatrically devastated.” Those who are in training to become the teachers, doctors, social workers, and so on are often reading and learning that deaf people are socially isolated, intellectually weak, behaviorally impulsive, and emotionally immature. The studies that gave rise to these stereotypes are totally ambushed by Lane leaving them no credibility whatsoever. The content of the tests, the way the tests were measured and judged, the language that was used, the content that was tested over are all examples of this pathetic attempt to come up with a “psychology of the deaf”. Lane argues that it is also a result of the hearing authorities struggle to impose their will on deaf children or adults. Additionally, he maintains that hearing people who control the affairs of deaf children and adults to not know deaf people and do not want to. Research on the deaf ought to include deaf people themselves.

    Lane hammers those professing to serve the deaf community today because they do not consult the deaf community. It would be unthinkable today to have a commission trying to deal with black problems without having blacks being prominant members of that commission. Deaf people themselves should be crucial participants in the discussion concerning the lives of deaf children and adults and the roles of the professions that serve them, but they have been excluded – socially, by law, and by oppressive education. Their counsel, which the parent of a newborn deaf child needs more than any other, is excluded from the home and the clinic.

    The attempt to educate deaf children with teaching methods developed for hearing children continues to prove a failure, decade after decade. In a classroom where English, spoken or written, is the basic means of communication, deaf children are baffled and withdrawn, the more so as nine out of ten became deaf before they could learn English at home. These children lack the knowledge of English and the skills of articulation and lip-reading required to succeed. Training in lip-reading and speech generally fails with children who have never heard speech, and most of the deaf children in school today have never heard speech. The tragedy is not that America’s deaf children cannot speak or lip-read English; the tragedy is that their education is conducted exclusively in this English they do not know. The result of a study of seventeen thousand deaf high school students in the United States found the average sixteen year old deaf student reads as poorly as an eight-year old hearing child. Since educational programs for deaf children have not succeeded in teaching them English and yet rely on English for all teaching, the programs long ago settled for instructing their deaf students in manual trades. It seems Lane is obviously right in his belief that it is vital that deaf children do not remain languageless for years on end, for this is to undermine their intellectual and social development.

    Lane believes the single most important reform, from which many will follow, is to get deaf adults -teachers, administrators,and parents – involved once again in the education of deaf children.

    Deaf people need to be given the opportunity to succeed in the hearing world if possible. They need to have choices. Not allowing ASL to be a primary language seems to be self-defeating in its effect. Not being allowed to have the opportunity to learn English, learn how to speak and lip-read is negligent as well. The Deaf may have their own culture but to advocate this isolation for themselves is one thing, quite another for a deaf child who has the possibility of living a productive, successful and happy life in the hearing world. Education must train children for quality job opportunities for the deaf. Making ASL the primary language is great as long as the second language – English – can be used at a functional level as soon as possible – for the deaf must have the opportunity to enter hearing society and succeed if possible. Communication with hearing people is critical for success in the work world. I strongly disagree with Lane’s contention that “we should refuse cochlear implants for young deaf children even if the devices were perfect.” Lane is right that we needn’t view children born deaf as tragically infirm but to say that using the Cochlear Implant is morally wrong is for him to force his ethical values and beliefs on all others. Each child is different. All options need to be available. —

    Tom Crews
    TSCREWS@ XXXXXX

  336. mcconnell
    Dec 09, 2010 @ 06:39:54

    Oh gawd, Lane, again?

  337. handeyes
    Dec 09, 2010 @ 12:05:38

    oh gawd, mcconnell again

    ; )

    sorry couldnt resist

    peace

    patti

  338. Candy
    Dec 09, 2010 @ 12:42:38

    Lane gets no respect from me.

    He didn’t walk in my shoe nor lived my life.

    Nor did he walked in the shoe or lived the life of many deaf people that lives in the mainstream America. The ones that are the true ASL(PSE) signing folks.

    So, yea…Lane sucks.

  339. handeyes
    Dec 09, 2010 @ 12:57:01

    Candy

    we are aiming to discuss IDEAS and CONCEPTS here not people

    wow

    also do u always walk with one shoe not 2?

    just teasing

    ya all are mighty testy this morning

    kinda wondering if u even read that student review above or just saw the name Lane and slammed ur mental door on it

    knowledge is power

    im a bit uncomfortable with ur anti-Hearing people stance too
    ya kinda do this often – if a Deaf person has a position contrary to urs, u will say well s/he did NOT live my life as a ASL(PSE) person

    candy nobody has lived ur life except for u

    one shoe on or one shoe off – it matters not

    its kinda obvious and u shouting that out repeatedly does not lend credence to your over all arching argument which u try to apply to the greater universe but then always run home to ur own personal experience

    nobody said everyone here

    So, yea…. Candy sucks – NOT

    i will not say that even though u seem determined to tempt me to do so

    I love you girl

    i truly do

    have a good day and get that other shoe on – or go barefoot like me but some symmetry at ur feet might help u get balanced and centered this golden a.m.

    peace,

    patti

  340. handeyes
    Dec 09, 2010 @ 13:12:32

    Larry H

    the LONG review from a student in 1996 criticizing Dr. Lane’s book Mask of Benevolence is riddled with inaccurate assumptions and outlandish statements – hence the repeated use of the word “seems”

    hence we can determine that this is not a professional review but rather someone who just grabbed and picked points to suit their argument

    hence we see a lack of any direct quotes from Lane’s book (other than the first one that has been used by others else where and is not a direct quote from Lane himself)

    Lane aint as radical as this student reviewer tries to make him out to be

    i will attest that Lane’s work (see im talking about his body of work and not just the fact that his audiogram yeilds a 0 dB or that he is gawd) i will attest that Lane’s work veers more to purist premise than i am in agreement with

    but as with most stuff – i read through it to understand the whole picture – gestalt like and all and try to see what syncs up with my personal value set, my life experiences, what i have seen on the ground and what i have not as well as assess folks credentials, contributions, and possible incentives etc

    there is much validity to what Lane puts forth – especially as it relates to other colonized / oppressed groups and their experiences in education

    to me im most often drawn to Freire and im looking forward to reading Dr. Lane et al newest book to see if he is still of the mind of a purely ethnic model that he was putting forth in some of his recent articles (see up up up above link re: ethnicity and ethics re: lane or google it)

    i lean more towards Baynton’s musing on that subject but i have a high regard for what Lane has put forth in all his works contributing to Deaf history and Deaf Cultural Studies

    a NOTE: – a few years back there was a public discussion about the blogsphere and i asked a Deaf professor (Deaf of Deaf) why he and many other leading Deaf scholars did not participate in discussions on the internet and he said something to the effect – why bother when it causes so much grief and folks who are totally unschooled can just throw out anything they want to debate without any knowledge or substance

    some days i think he was might right in his thinking

    other days i hope for the better angels of our nature

    and most often – i hope folks can see that im on our side and by OUR i mean all of us

    tread carefully folks – feelings are everywhere

    even the folks reading this thread who NEVER comment have feelings

    and lots of folks are still reading

    MUCH peace and love and joy

    peace

    patti

  341. handeyes
    Dec 09, 2010 @ 13:28:07

    Larry H

    i forgot to mention that i XXX part of the email address of tom crew to prevent spam etc

    most likely that email address is no longer in use given he wrote the review 14 years ago but just in case (note the date of his review – April 15 is the birthday of the first bi-bi school for the Deaf in the US – American School for the Deaf – just kinda jumped out at me now when checking the date of his write up)

    just an fyi as to why the XXX are now there

    peace

    patti

  342. Deafnicity
    Dec 09, 2010 @ 14:31:37

    John – I never used the user name Great Lakes. I do live in the Great Lakes now, but most of my research was conducted in the northwest to intentionally get as far away froom Gallaudet as possible. This is not to slight Gally. Rather, I wanted to be certain the validity of findings would apply beyond the immediate sphere of Washington DC metro area or Rochester NY area. I agree with most everything you write, maybve everything – but I tend to shy away from absolutes 🙂 That the concepts of the the communities are overlapping is PRECISELY what I mean in the quote of mine that Joseph posted. As for Deaf notes – I was a student then – I would hope my scholarship has matured since then – but yes the basics of that continues. Some of the specifics have changed. Hopefully, the theoretical stuff has become more concrete. I appreciate your comments.

  343. Deafnicity
    Dec 09, 2010 @ 14:36:12

    Patti said “its interesting to note that Veditz way back when identified Deaf folks as a CLASS and a COMMUNITY of INTEREST”

    Where? This is something that I took from Cornell and had not realized that the term had been used previously. I use it ini both my dissertation and it might be in the Ethnos article. It is also used by Lane, but I believe he is basing it on the Cornell article as well. Please tell me where Veditz uses that term.

    Thanks

  344. Deafnicity
    Dec 09, 2010 @ 14:57:19

    McConnell – first if I mispell your name it is ientirely accidental. Second, yes my fingers are fat. Third, my typoing is absolutely awful and my proof reading even worse. Did I make it through college because of ADA or because the manual typewriters were no longer in use? When it comes to peer reviewed articles I would hope that what I present is more scholarly than what I comment on ini blogs. But if I were dylexic — so what? It would make me no less intelligent. As for Candy’s misspelling of audism – I would not assume it bugs me to no end. Not sure why you presume that – whatever.

    Now to the part of your post that I found most interesting. You note that you are aware of discrimination based upon one’s ability to hear. One of the primary reasons that the examination of whether the Deaf American population exhibit the characteristics is because discrimination based on ethnicity concerns cultural values wheras discrimination based on physical traits is based on ethnicity. Scholars of race and ethnicity have wrestled with whether the concept of ethnicity explains discrimination. Hence, focus on the Deaf population offers the opportunity to see if ethncitity — independent of race — explains discrimination. That is not to dismiss physical traits or discrimination based on phsyicakl traits. Hence the quote from Joseph concerning multiple social identities is important. Is the discrimination that Deaf face in their daily lives based on physical traits or ethnicity. Race is a very slippery slope that simply put is not a workable tool of science — so my focus is on ethnicity — but I do not dispute discrimination based on physical traits. should the term audism be applied to Deaf ethnicity – ABSOLUTELY. Should it be applied to physical traits? SOMETIMES. That causes problems as some folks will pick up on the times it should not be applied and then commit a validity error of assuming it should NEVER be applied.

    Cheers

  345. mcconnell
    Dec 09, 2010 @ 16:16:49

    Deafnicity, it does bother you since you did mispell her name on purpose five times in the effort to try and prove a “point.” It looked more petty than not.

    Secondly, I referred to all people with hearing loss and not just about Deaf people.

  346. Deafnicity
    Dec 09, 2010 @ 20:12:17

    McConnell – Since you appear to disagreement with my view that we were in agreement on something I probably will have tto torture readers with a lengthy narrative tio explain MY views.

    I’m still not sure why you think it bugs me to no end. It doesn’t. She says she has her reasons, but fails to state those reasons. There is nothing there to be bugged about. Her choice. You seem to concur with my assertion that it shouldn’t bother me. Great – we agree on something. Do I think that mispelling her name will change her unspecified reasons? No. You can disagree whether my point was made all you want. Your choice. Do I think mispelling audism is silly? SURE DO. Does that view depend upon what you or anyone else thinks? NOPE. That the issue is even still on your mind – well not sure why you find a need to continue the distraction, but I won’t speculate about that. Doesn’t really matter.

    Now permit me the liberty of discussing something with relevance to this blog site.

    As for the term hearing loss — I don’t subscribe to that but see no need to misspell it. I also see no reason to refuse to state my reasons. Hearing loss is an IMPRECISE description of variations in physicality or medical circumstance if you must cling to medical models.

    Indeed, the use of pure tone averages for a classificatory scheme is something most mathematicians would run from. The dB is measure on logs. Since when can logs be averaged when measured at different frequencies? The “scores” or pure tone averages MIGHT resemble an index measuring sound detection — but not hearing loss. Treating an index as a loss is another yet idea that should have been thought out more by the medical professions. Everything that follows is not necessarily silly, but a observers and users of pta need to undertand their limitations. Calling the measure a loss is not precise. One could possibly argue along the lines of statistical deviance from an average inidex – maybe. I’d have to consult a mathematician. Or maybe pull out some of my graduate stats books out of some box in the basement. Tucker has argued along the lines of cultural deviance but then compares not getting a CI to not getting a colostomy. That of course is the silliest of silly arguments. People don’t get colostomies because they feel discriminated against 🙂

    I had often wondered where the idea of percentage of hearing loss came from. It is one of the silliest classifications schemes I have ever encountered. As for your comment being about all deaf people — why is that relevant? I don’t follow what you are trying to imply. I stated that recognizing the possibility that someone can have multiple social identities resolves some contradictions that exist if one subscribes to an outdated binary model of Deaf identity. The contradiction that postdeaf advocates allege is there ISN’T THERE. It only exists when full of misundertandings.

    Nothing I wrote suggests that someone who is deaf MUST be Deaf also. However, someone who is Deaf can also be deaf. So that you are discussing all deaf dioes not impeach the idea that Deaf are dsicriminated against on an ethnic basis and deaf are discriminated on a basis of medically defined circumstance.

    Now this does lead to the idea that if one stops being ethnic that the discrimination will decrease – so why not assimilate? First, assimilation does not guarantee upward social mobility. Second, one can just as easily argue that a Deaf person stopped trying to act hearing they would also experience less discrimination. This is not as far fetched as it may seem to you. Deaf who use their voice in a check line may find it more difficult to get a cashier to write things down than if they don’t use their voice at all and point at their ears. I take the position that seekinig the causes of and attempting to prevent discrimination against deaf that is based on physicality is no more or no less important than seeking the causes and attempting to prevent discrimination against those who are Deaf.

    Now this leads to yet another point and many after that — but I will try to limit myself here. When a social scientist studies the Deaf population it is not methodologically sound to apply findings to all deaf. That is a usually a validity error. Same happens when sampling oral deaf or late deafened. Start out first by examining within the sub populations whether the hypothesis is supported. Then expand the testing to see if the validity can be expanded. This is important, If I survey New Yorkers attitudes about Long Island — well that may be important to them — but not so important to someone from Rochester or Buffalo – except maybe in a bar and ordering long island tea.

    There are going to be things that Deaf don’t care about when it comes to the oral deaf experience and there will be things oral deaf don’t care about when it comes to the Deaf experience. Indeed – the term communities of interests that Patti mentioned is a key part of this. There are areas where the interests of oral deaf and Deaf overlap — captioning for example. Yet there are also communities of institutions. The institutions organize the interests — NAD, AGB etc. And then there are communities of culture — to argue for Deaf culture does not mean that there is not an oral deaf culture. Or to argue the absence of an oral deaf culture does not mean an absence of Deaf culture.

    Of course that is the model that the distinguished gentleman from the University of Athens noticed in my writings and the research on Deaf ethnos began. Is there an oral deaf ethnos? I wouldn’t rule it out, but I haven’t researched that idea, and quite frankly have little interest in that UNLESS it can be interlinked with audism 🙂 That is about 20 years of research and I’ll leave that to some youngster to do.

  347. Deafnicity
    Dec 09, 2010 @ 22:16:07

    dang typos — should have been “to be in disagreement” (in first sentence.

  348. handeyes
    Dec 09, 2010 @ 23:22:48

    Deafnicity –

    thanks much for the info –

    the Veditz – community of interests (used 1) and class (used several times) comes from his President’s Message in the Proceedings of the Ninth Convention of the National Association of the Deaf and the Third World’s Congress of the Deaf, 1910 (Los Angeles, CA: Philocophus Press, 1912)

    its a rocking document – one of me favorite primary sources – this is the place where the “People of the Eye” expression was first introduced me think (at least i havent seen it elsewhere before that)

    NOTE: the conference was in 1910 in colorado but the proceedings didnt get printed til later

    re: all else u wrote here – very cool stuff and i thank
    i do think that is a common ground that Deaf folks from all parts of the spectrum share – they have each experienced some degree of avdism in their lives – whether it be due to their physical state or their culture and language or all three

    peace,

    patti

  349. handeyes
    Dec 09, 2010 @ 23:26:04

    yes i did the v on purpose – not to be spiteful but just rather to be playful

    im a happy chap when folks r feeding me brain and me soul with deep musing and questions to aid me on the quest i on and oh sticking to the point of the blog entry too – wow – that is pure gold

    there’s gold in them there hills

    knowledge is power and verity is clarity

    much peace

    patti

  350. Candy
    Dec 10, 2010 @ 00:02:50

    Deafnicity..

    I had already summarized why I misspelled the A word. You mentioned my post, so It would infer that you have already seen why I spelled the A word the way I do. I don’t subscribe to deafhood but I don’t spell it any differently. Spelling the A word the way I did is simply making a statement that the A word need to be eliminated and not accepted as a word. The A word creates division, creates an attitude of superiority of being Deaf is better than being deaf, among many other examples. The whole meaning of the A word got distorted to a point where it is being used as a weapon against deaf people. Deaf people are being called the A word, even a DOD like myself!

    Every deaf and hard of hearing person knows what it is like to be oppressed and discriminated. We do not need a special word.

    The fact that you misspelled my name five times IS petty. As I said, it reflects on you. You can’t take that back. There’s only one thing you can do, and that is up to you.

  351. John S.
    Dec 10, 2010 @ 00:12:31

    handeyes,

    To answer your question, yes I *do* use ASL. I wish I used it more than I do now so that my fluency would improve naturally. Correct, the words ‘deaf’ and ‘Deaf’ have differing meanings. The way that I learned it and believe it to be is that ‘deaf’ refers to the physical deafness of the individual and/or group. This is often described with audiology terms. ‘Deaf’ however, refers to the group identity of both the group and of the individual. As with most other formally recognized groups the initial letter is capitalized. Therefore, ‘D’eaf has both an explicit and an implicit meaning.

    Unfortunately, the medical/pathological framework is strong in society. However, this is not to mean that this framework is the exclusive framework in society. This would be a false statement in that Deaf schools (some publicly funded) and Deaf services (some publicly funded) do exist in society. However, the mind-set of many in society (at any given level) is along the lines of the medical/pathological framework. The source of this is – in my opinion – ignorance. This *may* be diminishing in that services such as interpreters, captioning, etc… exist as part of what is considered to be the norm. For example, there are interpreters at Congressional hearings, state and local governmental functions, etc… However, it is still a battle to have any services. Which is not to say that I am asking for anything other than equality. I would prefer a “kinder and gentler nation” which recognizes the validity of Deaf and makes reasonable accommodations. When this is done the financial and social cost to society will be repaid many times over by the contributions of Deaf.

    I attended a conference where Lane was the guest speaker. His points were well founded and well made.

    About nationalities and languages, I remember in the 70s the issue of French being used in Quebec. While French may not have been the statistical majority of the population there was a movement in Quebec to secede from Canada. Was this based solely on the language use? I don’t think so. It also included some of the cultural-behavioral norms that were common at that time. Again, these norms may not have been the statistical majority yet they were quite common. They were viewed as acceptable. Thus, the identification with Canada as a whole was more of an us-them phenomena. I don’t know if this is still true or to what extent it may be. But languages do contribute to group cohesion. Even should one use a dialect of a language they are using that language and will probably have that identity. If not by themselves others may identify someone as a member of a group solely on the basis of language. Once again, the capitalization of the first letter in the spelling of a group is a recognition of the validity of that group. And this recognition may not be agreed upon by all.

    It has been my experience that many who denigrate the capitalization in the spelling of an ethnic group’s name are wishing to avoid the recognition of the group’s valid identity. This may be because if a group has a valid identity then the (in-)formal recognition of that group negates the desire to assimilate members solely into the larger society (with the exclusion of group identity). Many persons doing this forget (willingly?) that society consists of many distinct social/cultural/ethnic/linguistic groups.

  352. handeyes
    Dec 10, 2010 @ 00:34:05

    re: petty =

    according to merriam-webster

    1
    : having secondary rank or importance : minor, subordinate
    2
    : having little or no importance or significance
    3
    : marked by or reflective of narrow interests and sympathies

    i believe that the pettiness may be going both ways now

    just an observation

    if it continues on and on like this it may lead folks to think they smell a red herring (any diversion intended to distract attention from the main issue)

    Candy – re: ur preferred spelling – no problem. I dont think its effective – meaning i dont think it advances ur call for the banning of the term. in fact i think all the hupla and hot air about the dangers of the term has increased its usage and awareness. yep some folks are abusing it (on both ends of the rhetoric rainbow) and that is NOT cool but thankfully they are few and far between and it is kinda customary for new terms to go through those phases and it is kinda customary in the age of punditry for anything to get misrepresented etc

    im totally cool with ur using words like oppression and discrimination instead

    peace

    patti

  353. handeyes
    Dec 10, 2010 @ 00:43:22

    John S

    thanks for ur comment – understand what u have put forth

    i also wonder with the increased recognition, spread, usage, appreciation, respect for ASL and Deaf culture via the 2010 ICED Vancouver New Era Agreement, baby signs, ASL courses in Universities (soon to be the 3rd most popular language studied etc), ASL in space (Hearing astronaut), vp, Deaf folks in TV, films, commercials etc that the medical / pathological view will decrease or at least be questioned and explored more?

    re: my point about a natural sign for People of the Eye in addition to the word Deaf – not to replace or displace it but just to expand our understanding of ourselves and to have a term that is totally removed from written or spoken form initially – what do u think of that

    crazy me?

    this is an old vlog where i kinda was discussing the concept – it might be a bit clearer there than my trying to explain it here (or it might not ; )

    let me now ur thoughts if and when u get a chance

    peace

    patti

  354. finlake
    Dec 10, 2010 @ 01:24:48

    I feel compelled to mention I feel the “-ism” craziness has gone too far to the point of target every opponent to the nth degree as compared to use the “-ism” to describe the experience, itself.

    For example — colonism, audism, ableism, linguism, etc. etc.

  355. handeyes
    Dec 10, 2010 @ 04:15:30

    ah – have u seen gingerism – that is one that i learned this summer

    thankfully not much of a problem in the US but oy!

    peace

    patti

  356. Ann_C
    Dec 10, 2010 @ 05:16:54

    Gingerism? Really?

    I know, I know, red-head, ginger-whatever. 😉

    My grandmother was ginger to her older sister, who hated the fact that her younger sib attracted so much attention with her ginger, ah, red hair. Woops, totally off the topic here.

    A~

  357. deafnicity
    Dec 10, 2010 @ 05:34:03

    Candy – Am I correct to assume that you have have not read that portion of Humphries dissertation where he described why he coined the term to start with? I don’t mean picking up a few pieces of how someone else has interpeted Humprhies or selectively quoting from an unpublished paper (1975) that is difficult to get access to. I mean his dissertation from 1977 that is available to anyone who orders it. Have you read it? Why ask? Well in order to respond to the comments you have made about audism it is necessary to grasp what your understanding of it is.

    Did you say you are in wisconsin? The Deaf Lutheran church in Madison is supposed to be having some christmas gathering this on Sunday. I’m not into religion but I do enjoy being arond other D/deaf folks.

  358. deafnicity
    Dec 10, 2010 @ 05:56:31

    “Dang mannerisms are not polite!” i forget who said that so tar and feather me for not citing the source.

  359. Candy
    Dec 10, 2010 @ 12:44:28

    I have watched Tom Humphrie’s video where he explains what audism is and how he chose that word, etc. Ya know there are people that argues that audism could actually mean the opposite, deaf oppressing the hearing. Have read up on it too, not sure if it was that material you mentione. Will have to check.

    Not into religion either.. Been there once tho, I liked how they turned that building into a place where deaf folks can get together not just for religion purposes but for socializing – considering deaf clubs aint’ what it used to be. Don’t think I can make it, but..one day perhaps we’ll bump into each other.

  360. Candy
    Dec 10, 2010 @ 12:45:34

    Yikes..

    A typo! Am in a rush…

  361. handeyes
    Dec 10, 2010 @ 13:55:06

    re: mannerism quote – very funny

    “impressionism is unimpressive” touche ; )

    re: gingerism – i kid u not – BBC article
    http://news.bbc.co.uk/2/hi/6725653.stm

    yeah red hair can attract and repel but i had no idea there were so many myths associated with redheads until i got introduced to the word gingerism.

    so while some folks may be dismayed that there is a word for the hatred of redheads – me myself am more alarmed by the fact that there is such a thing / that some folks actually can bolster up hatred for a person based on the color of their hair. I totally have always thought that racism was insane so now to learn some folks just look to the stuff floating on ur head to exhibit hatred is like – wow the world is weird sometimes

    and yeah i have been picked on a plenty for me hair color – thankfully in the US now its considered desirable but the winds do change eh

    as angie suss paul always said “hatred is simply a waste of time”

    re: Humphries explanation of how he coined the term audism – excerpt from his dissertation
    http://audismfreeamerica.blogspot.com/2009/06/afa-shares-excerpt-of-dr-humphries.html

    re: the video of tom explaining it – do u have a link for that? would be nice to share here if it is online – i dont think i have ever seen that video

    by the way – for folks who are in the Rochester area –
    Dr. Tom Humprhies will be presenting at RIT on
    December 16 at 7 pm
    CSD Student Development Center 1300

    peace

    patti

  362. Deafnicity
    Dec 10, 2010 @ 15:04:18

    Candy – if I may identify somoe of my credentials without showing off – my are os specialization in sociology is race and ethnicity. Hence the argument of reverse audism is comprable to reverse racism. Far more literature exists in the area of reverse racism. Certainly a hearing person can be the target of discrimination and prejudice. If people want to call that reverse audism they are welcome to it, but I think if they read the literture that disputes reverse racism without disputing that an injury occurs, they just may want to find an other term. Maybe your avdism would work for that. Hearing parents can also be the targets of audism. Not so long ago parents having excessive pleasure during sexual intercourse was considered a cause of deafness and parents were highly stigmatized for having a deaf child. Does anybody believe that today — I hope not. But the residuals of some moral wrong, some sin, or some how not being blessed by god — literally children of lesser god if I may steal the play (hate the movie) title. The medical industries certainly play with guilt that parents may feel and argue that the child is not whole. Let us fix the child and they will be human — the not so subtle way of telling the hearing parent that they had a less than human child is surely audism as there are stratifying audiocentric assumptions that if the parent follows the doctors suggestions the child will experience the same rights and privileges as a hearing person — what a telling admission of audism. Odd play how they use audism to suggest how to prevent the child becioming a target of audism. Who is committing acts of audism against who complicates the heck out of the theory of audism, but it is a layer that needs to be added. Before it can be added, updating the term would be useful. I came up with a list of 16 possible dyadic relationships for audism. But that just complicated the hell out of the paper and the co-author of the article being worked on rightfully suggested to savee that for another day 🙂 I mention this because I do understand and do agree to that possibility. Howeverr, when a relationship between a majority and minority is observed, the same act committed by the majority against the minority may not have the same impact as the minority discriminating against the majority. Both are wrong, but one has more injury. A hearing person who is denied employment with a Deaf owned business simply because they are hearing is certainly wrong if being hearing or deaf has nothing to do with job performance. But if a hearing owned business denies employment because a person is D/deaf or deaf then the injury is greater. Maybe not greater on the individual basis, but greater to the D/deaf community than to the hearing population (not sure I would call them a community).

  363. Dianrez
    Dec 10, 2010 @ 15:28:10

    This was just posted this morning:

    http://tinyurl.com/FailUgly2

    It explains how “failing ugly” or “failing hot” happens at the parts level of the AB cochlear implant. What struck me is the suggestion that the company knew of problems and what problems could mean to the integrity of the cochlea itself months before issuing the recall. That says it all for the integrity of the company itself. Twit happens.

    I apologize for that dig, but we need to fix a point where we no longer find these things acceptable.

  364. Candy
    Dec 10, 2010 @ 17:27:11

    I’d respond…but as it is, I am at work and pressed with time.

    Of course reverse discrimination occurs.

    It seems like I either will need to respond here or write a post.

  365. Candy
    Dec 10, 2010 @ 17:39:42

    Dianrez..

    Do you realize I can list hundreds of things that are not acceptable with many things – both devices and procedures.

    Yet, when listing them in areas of importance, I will list the ones that matter to me.

    These recipients of AB will make sure these things don’t happen.

    Question here is, what’s ur vested interest?? Other than to bad mouth them as quick as u can.

    Your actions are not sincere. They (AB recipients) don’t need nor want ur ‘help’.

    These parents are not ignorant. I hope U realize that.

  366. Jean Boutcher
    Dec 10, 2010 @ 18:12:55

    Patti wrote: “Dr. Tom Humprhies will be presenting at RIT on
    December 16 at 7 pm CSD Student Development Center 1300”

    Patti, I hope that somneone at the NTID will do the videotaping on Dr. Humphries’s presentation for deaf Facebookers to view on FB? Merci beaucoup.

  367. Dianrez
    Dec 10, 2010 @ 18:26:55

    Candy, I’ll contest your calling me insincere. As a Deaf member of the Deaf community, I have an interest in making sure that the products they are invested with (mostly when they are too young to participate in the decision) are of the best quality possible with no “gotchas” or “twit happens” involved.

    Parents may “not need help”, but they need protection as this is an emotional decision for them. When one is vulnerable and has the pressure of time, they will decide to go with what they know best–hearing. It takes an exceptional parent to look further than that and seek experiences that may give more perspectives.

    Also, having three grown children, one Deaf, gives the possibility that we will see future Deaf children born in this family. Even if this were not a factor, I still stand to benefit personally from compatriots having a trouble-free CI experience if they go that route.

    I WILL bad mouth anything that puts them beneath net profit in priority. That is where I put the point of unacceptability.

  368. Ann_C
    Dec 10, 2010 @ 19:52:48

    Ginger queen,

    Mind you, I ain’t teasin’. That was an interesting article on gingerism. It is quite prevalent in Britain unfortunately.

    Deafnicity,

    Sixteen possible dyadic relationships for audism…wow, that does seem complicated alright. What would you call the oppression that results from a Deaf person calling a deaf person or another Deaf person who has a different view an “audist”? This term has been so overused in attempts to shut ppl up or to shut down a deaf aggregator. *ahem* The abuse of this word is one of several reasons why some D/deaf ppl oppose the word “audism” to begin with.

  369. Deafnicity
    Dec 10, 2010 @ 20:11:39

    Ann_C well that is one of the major problems with any ism studied on a micro level – the motivation of the user is a key factor. On a macro level – if a large number of Deaf were simply labeling oral deaf as audists that would certainly be discrimination, possibly audism UNLESS the description is accurate and can be supported with facts. And of course like calling a person a racist – even if accurate – is the point to elevate the person’s awareness of just be spiteful, vindictive etc etc. Now to blantantly label all HoH as audist is just stupid and uninformed. Yet, if that is what the person has experienced from HoH then based on the facts presented to them they are offering an accurate description. It is certainly a vladity error. But is that Deaf person condemning the prejudices that have been dealt by HoH people acting from an an supremacist ideology based on hearing ability? I don’t know that such a thing can be determined in a generalized way and would need to be determined on a case by case basis basis. What could be said is that their experiences are limited and possibly uninformed, The question is — what happens after they get informed? Perhaps they even develop egalitarian values and culturally drift toward core values of equality — but then find themselves actin in contradcition to those values. Wouldn’t that be audism as well – no matter how well intended? this is different than an impaired consciousness. I am referring to an unimpaired one where the person knows better – but reacts without being able to go theoru their cognitive filters that define equality. Isn’t that audism? Wouldn’t such a person deny that they are being audist? Get complicated for sure. I enjoyed your question. AH 3 more papers to grade!

  370. mcconnell
    Dec 10, 2010 @ 20:20:19

    Deafnicity,

    To say that one has a hearing loss does describe, of course, a medical condition. There is no “clinging” to the words “hearing loss” when it accurately describes the condition that you and I have. That’s undeniable. You have a hearing loss. I have hearing loss. Patti, too. Candy, and a whole lotta people.

    Secondly, for you to intentionally mispell Candy’s screen name was done to somehow “prove” something. In the end, it didn’t prove anything.

    Why the need for a such a long spiel in your response? Interesting.

    For those who insist on saying “I have XX percent hearing loss”….

    http://www.hearinglosshelp.com/articles/decibelsvspercent.htm

  371. Dianrez
    Dec 10, 2010 @ 20:50:46

    Sounds like another topic that deserves a blog in itself, if only because of the discussion it generates.

    Audism, in the most accepted meaning, means oppression by a hearing person in power toward a deaf person using hearing criteria. That’s the only definition I use.

    I wouldn’t use it against a HOH or deaf person in social situations even if that person applies a hearing standard against me. Fortunately, this type of person is rare and most often would have other problems as well.

    Misuse of the word “audism” by a very few uninformed Deaf people to attack others they disagree with doesn’t negate the meaning of the term. Like Deafnicity said, each case has to be examined individually, but I would prefer that the A-word be kept out of it entirely.

    It’s like racism: one immediately visualizes a white person abusing a black person based on race. We don’t normally think of the reverse; in fact, we might think it sweet justice.

    If a black person disses another black person because he is darker, we might call that meanness or bullying, not racism, even though technically it may fit the definition.

    Over the years, we accepted racism as unfair treatment and limiting opportunities of another because of color (or ethnicity.) It has developed into a powerful word that makes people sit up and listen and hopefully re-examine themselves.

    It can happen with audism, too, if we develop it likewise and use it correctly. It can help all d/Deaf people, as we know HOH people also experience discrimination and limiting of opportunities. To avoid its being abused, we need to catch every time it happens and explain that it was inappropriate and best reserved for specific, blatant situations.

    Otherwise, denying the word gives license to true audists to keep on doing it because they use slippery arguments why it is not discrimination. After all, university lectures are meant to be heard. Truck drivers must use CB radios. Doctors must use stethoscopes. Astronauts must use helmet communication.

  372. Deafnicity
    Dec 10, 2010 @ 22:36:15

    mcconnel – the label hearing loss is imprecise and is not a workable tool of science so I don’t use it. Surely if I said only that then more explanation would be demanded. Not sure why you find that interesting – but thanks for the complement 🙂

  373. handeyes
    Dec 10, 2010 @ 22:44:09

    Dianrez – thank you VERY much for that link. it is VERY important

    i have added it to the original blog entry with a note of updated information. It seems the Hearing blog aims to be a bit of a watch dog and im very glad to see such out there

    re: folks not being ignorant – i would love to say that they arent but this thread would certain show that folks are ignorant and that ignorance often is not bliss – sadly

    Dianrez – u have every right to care about this topic. I dont like th accusation and judgment that was cast at u. it is unjust and inaccurate. and says more about the caster than its target

    boo

    and so we must return to the observation of the pattern of how some folks AVOID talking about IDEAS and CONCEPTS and instead shift things to talk about people

    or spelling

    interesting

    but no matter because some truths have been told and many of us have eyes

    the bullet items (scroll down folks) in that link http://thehearingblog.com/archives/65 are VERY important

    dianrez – if u hadnt brought that link in here – i would not have known about that update so i very very very much appreciate u sharing it here and i very much appreciate the Hearing blog for posting those primary documents

    verity is clarity (if i aint done justice to the source that first introduced me to my latest and fav phrase – “verity is clarity” i shall tip me hat at Jeffrey now – thank ya pal it is might handy)

    peace

    patti

  374. handeyes
    Dec 10, 2010 @ 22:46:14

    Jean

    a few folks have asked if the Humphries lecture is gonna be videotaped – it is customary for NTID to videotape our guest presenters when they are agreeable to it – so i have asked the committee responsible for him coming if in fact it will be videotaped and if yes – how it will be made available for folks to access.

    if i get a reply – ill let u know. if i forget – just give me a nudge

    much peace

    patti

  375. Ann_C
    Dec 10, 2010 @ 22:47:02

    Deafnicity,

    “But is that Deaf person condemning the prejudices that have been dealt by HoH people acting from an an supremacist ideology based on hearing ability?”

    Very interesting question. If the Deaf person was an ex-oralist, it’s possible. 😉

    If the Deaf person was born into a culturally Deaf family and raised with Deaf culture values, then he would be acting from what? from a superior point of view that being culturally Deaf is better than being an oralist? Or something else?

    What if the accused is also culturally Deaf instead? Let’s say that the Deaf accuser does NOT have an impaired consciousness and knows better (and as you say, acted without going thru the cognitive filters that define equality), then what would that accusation of “audist” really be? Audism? Reverse audism? Reverse deafism? This is something that has had ppl wondering what the hell do you call THAT?

    I don’t believe that bull about HOH get less discrimination from the hearing than the culturally Deaf do. The HOH take a lotta cr*p from both hearing and culturally Deaf.

  376. handeyes
    Dec 10, 2010 @ 22:57:40

    Ann_C – glad u found the BBC article on gingerism of interest – i was certainly surprised by it

    once when we were on a trip a toll booth man looked at me and then my son in the back seat and said – “you know you are a dying breed” and as i drove away – i looked at my daughter and asked “did i understand him right” and she said YEP

    and then i proceeded to rant for a good 40 minutes about what kinda bloody doomsday message is that to receive on a thurway when u have miles of road before u

    i mean what the heck was i supposed to do with that info

    my daughter was like “oh ma!”

    and then later i did a bit a research and nah we aint dying off – we is fine so there!

    re: the term audism and nearly shutting down a Deaf aggregator – oh goodness Ann_C – im gonna assume u are just lacking information and not that u have swallowed some mighty bullS#it spun by folks

    how do i know what is what? cuz i am one of the people who advocated for the inclusion of some type of recognition that audism would not be accepted at DR just as racism, sexism, heterosexism, etc are already duly noted

    i was told it would be added but it never was

    when it was stated that audism was kinda new and hard to judge – it was agreed that “disability” and “cultural group” would be added to cover both the “d” and the “D” just as gender, race, religion, sexual orientation… are specified in guideline #8 presently

    i was told it would be added but it never was

    go figure

    i have NO desire to see DR or DVTV or ASL rocks or….. shut down

    i have a desire for peace and justice for all

    just for clarification

    but that is the truth – i had two assurances from the owner and operator of DR that he would be adding to the guidelines but he never did

    the truth and nothing but the truth

    verity is clarity

    all the anti-audism hype is really really really weird

    all the anti-awareness and apologist stances are just well a wee bit hmmmmm ignorant? arrogant? mystifying?

    hmmmm cant think of the right word at all

    peace

    patti

  377. handeyes
    Dec 10, 2010 @ 23:03:50

    to all –

    i appreciate folks SINCERE effort to explain to mconnell and candy what audism means and what it does not mean

    i think that their recent tactics (and the past ones of when proving wrong shouting out “that is debatable” or “you dont have a right to say anything – only i do because im Deaf of Deaf…” or obsession over other folks spelling or demanding for terms that are offensive to others etc calls into question…..

    their sincerity

    of course i hope i am wrong

    i always hope i am wrong in these types of matters but more often than not i end up finding out that i have been wrong to hope for the better angels of our nature in certain people

    regardless of them and what they are playing at (poorly playing at i might add)

    i do appreciate all u have brought to the table

    i have learned a plenty

    now about those cochlear implants and the big issue of how does an infant tell us s/he is in pain when the practitioners and experts are saying – it is natural for them to try to take them off or to be uncomfortable or to cry at first – it takes time, it takes training, it takes adjustment…. if they dont use them they will never get used to them, if they dont use them then they will be destined to a world of isolation and dependence, if they dont use them….

    and some have actually said this

    peace

    patti

  378. Candy
    Dec 10, 2010 @ 23:09:18

    Deafnicity…

    For most part of the day, I was bothered by your sentence:

    “I’m not into religion but I do enjoy being arond other D/deaf folks.”

    Truth is, I thought WTF?! D/deaf folks?

    This doesn’t even come to mind when I got to any deaf events. D/d or d/D. Just does not happen. There is something wrong with that picture. It tells me how you see deaf people as measurement or where they fit in the deaf world.

    Also, I want to share something a good friend of mine shared with me, that Social Science is NEVER absolute. This would make sense the way it was explained to me.

    All the word axdism does is to divide the community. It does not help the deaf community as a whole. Axdism is another form of measurement to see who fits where.

    Parents should never be considered discriminating nor oppressive, because it is a given that most parents have unconditional love for their child (for the most part) and usually make decision in the best interest of their child, ergo, to use that A word is an insult.

    The deaf who enjoys abusing that A word often times use it to demean others because they themselves have been oppressed and/or discriminated in the past. It’s the same cycle one would find in a domestic violence cycle.

    The most simple solution is to strive for respect in all communication and respect for all forms of language such as PSE/SEE/ASL and so on.

    From that respect, each is free to soar as high as possible. This is a matter of choice. A preference. Not, which is better nor which works better. Because we all are not the same, what works for one does not necessarily work for all.

    Discrimination and oppression happens to everyone. Even among the hearing people. You’d be surprised. And, if you don’t know that yet, you’re not in touch with the world at large.

  379. John S.
    Dec 10, 2010 @ 23:10:39

    handeyes,

    I did some reading about the “2010 ICED Vancouver New Era Agreement”. What I found was this –

    http://www.wfdeaf.org/pdf/ICED_article.pdf

    When I first head about the Congress of Milan (years ago) I was shocked that some individuals base their assumptions/positions and/or policies upon prejudicial information that was that old! Certainly, newer information and attitudes have arisen since then. Why are some basing their ignorance upon something like that? This 1880 decision was a dark point for humanity in that it gave credence to institutionalized prejudice.

    I have made the comment in another forum that if teaching and/or using sign is improper then why is it available in publicly-funded institutions? To me it makes no sense for society to frown upon signing while at the same time teaching it and/or using it in public schools. This is from grade-schools up to and including colleges-universities.

    The minset about the negativity of signing and the negativity of Deaf is a negativity about almost any difference from the majority. This negativity is found in some who are employed in different industries. They have shown a fear of losing business because of accommodations mandated under the ADA. And yet, this fear is irrational in that accommodations allow for a wider participation by members of society.

    The mindset – as described in this article – of Deaf being disabled is factually and interpretively incorrect. Attitudinal changes in the general population generally precede changes in policy by decision-makers. However, not all persons see the need for change. Some are slower in the realization of the need for attitudes to change.

    I believe Milan *DID* have a detrimental effect then and still does. There are still those who take a negative view of Deaf that they cannot validate. It is stated in this article that Vancouver 2010 hopes to establish “a point of renewed effort to ensure equality for all people”. This to me is a fantastic and achievable goal. However, there will always be those who fall behind in realization of human achievement.

  380. Candy
    Dec 10, 2010 @ 23:24:47

    Dianrez..

    It is clear that you are biased. You have already admitted to it unawares by saying “mostly when they are too young to participate in the decision.” Plus, you covered all CI when you made that statement, thus, showing bias.

    If you understood how medical devices are not always problem free nor are they always without defect, then you will know that just because one company’s product seem to have problems with a few out of thousands of their specific model does not mean the whole CI industry has the same defect or problem.

    You have no vested interest and as such, you participate with fervor that only indicates one thing: possible malice and definite bias.

    These things do not matter to you, you have no interest in getting a CI, your deaf child has no interest in getting a CI. And, you probably do not want any future generation of yours getting one.

    It would seem that typically anyone that does not have any vested interest in a CI would typically not get into it at all, simply because it does not mean much to them. Only those that have this bias would get into it in ways that reveals their true intent, just like what you are now doing.

    Also another revelation is your statement: as a Deaf member of the Deaf community.

    Since when does a ‘Deaf member of the Deaf community’ has an interest in this? I know many deaf (remember I don’t use d/D)member of the signing community that would quickly say they don’t give a f*ck because it don’t mean anything to them. They don’t plan to get one, they’re not considering implanting their child, etc. So, why should they get involved? And, they don’t.

    You’re not being sincere. I have seen how you patronize these parents of children who are implanted. You don’t fool me.

  381. Candy
    Dec 10, 2010 @ 23:29:00

    Patti..

    I first saw Tom’s video on DR. A long time ago. I’ll see if I can find it.

    It was interesting when I first saw it, but was bothered because I had a lot of questions. Mostly, why? why a special word for deaf people? And, then next thing you know, that A word being thrown at a lot of people! Was that what Tom intended it to be? Who knows.

  382. Dianrez
    Dec 10, 2010 @ 23:58:22

    Candy, that wasn’t called for. Wayyy off base.

    One of many corrections: “your deaf child has no interest in getting a CI. And, you probably do not want any future generation of yours getting one.”

    WRONG.

    When he was younger, Son was told it was up to him if he wanted one, and he was on the fence for a while. Now he has decided against it; he is waiting for better alternatives after discussions with friends having CIs.

    And: regarding future generations, that decision will be left up to their respective parents and the state of the art at that time, when it is as improved as we can make it.

    *Patti wants to keep the discussion on issues and ideas, not people.*

  383. Joseph Pietro Riolo
    Dec 11, 2010 @ 00:11:03

    Oh, wow, 382 comments! That’s OK. Quantity is not important as long as the quality of comments is good. There are so many good thoughts and points made by commenters that I really want to touch on but I have to be selective due to not enough time.

    On the question about whether it is good for Alexander Graham Bell Association for the Deaf and Hard of Hearing to continue relationship with Advanced Bionics: I am aware of guilt-by-association that some people use to support their moral or ethical position. For me, I would avoid guilt-by-association as much as possible because logically speaking, it is invalid. Just because a person is related to another person who does the wrong thing does not necessarily mean that the first person is responsible for the second person’s deed. It has to be more than the mere relationship in order for the first person to become responsible for the second person’s deed. I recall seeing one or two items showed up in DeafRead.com that talked about Mr. Kendall Myers who was the great-grandson of Dr. Alexander Graham Bell being jailed for spying for Cuba. Why did it show up in DeafRead.com? Probably because few people thought that Mr. Myers was guilt because of his association, no matter how remote it is, with Dr. Bell that they had strong hatred for. This is an obvious abuse of association in order to bolster one’s moral or ethical position.

    Unless there are hard, concrete, irrefutable evidences that AGBADHH colludes with Advanced Bionics or is deeply (not merely superficially) involved with Advanced Bionics’ questionable practices or deeds; I would say that it is entirely up to AGBADHH to decide whether to continue or discontinue the relationship with Advanced Bionics. It is possible that because Advanced Bionics did a lot of good things for the people and organizations, AGBADHH may feel that the benefits outweigh the apparent impropriety of being associated with the company. This is like not wanting to throw out the baby with the bath water.

    Have to go for now. I will be back when I can.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  384. mcconnell
    Dec 11, 2010 @ 00:31:24

    Careful JPR, you just might be accused of being an “apologist.”

    🙂

  385. handeyes
    Dec 11, 2010 @ 00:54:28

    John S

    i really appreciate ur discussing ICED 2010 Vancouver New Era Agreement – i think it was a very important shift towards the concept of Equality of Condition

    some of me favorite parts of the document are:

    – “For Deaf people, it is an inalienable right to be acknowledged as a linguistic and cultural minority integral to every society.”

    – “Therefore we: reject all resolutions passed at the ICED Milan Congress in 1880 that denied the inclusion of sign languages in educational programs for Deaf students”

    – “Call upon all Nations to include the sign languages of their Deaf citizens as legitimate languages for these Nations and to treat them as equal to those of the hearing majority”

    – “Call upon all Nations to facilitate, enhance and embrace their Deaf citizen’s participation in all governmental decision-making process affecting all aspects of their lives”

    – “Call upon all Nations to involve their Deaf citizens to assist parents of Deaf infants, children and youth in appreciation of the Deaf culture and sign languages”

    thanks again

    peace

    patti

  386. handeyes
    Dec 11, 2010 @ 01:05:21

    Candy – u r slathering Dianrez with outlandish accusations that simply reflect back on u

    it is sad to watch – keep it up and u r blocked because i really do want this to be about concepts and ideas

    and cuz whether or not she is biased is debatable ; )

    and even if she is that is her right

    and cuz folks r gonna start asking questions ur way like – well if she aint got no right to have a vested interest in the safety of CIs and the welfare of Deaf children and the Deaf community then we gotta ask hmmmm what the heck were some folks endorsing AB 2072 when they dont live in that state and dont have Deaf children and and and ….

    dont want to go there cuz its a wicked back and forth and im not in the mood for the game of twister and u got ur own candy land to be spinning and slathering folks with ur steam brewed in the black kettle

    and cuz i actually think it is ok to have opinions and it is ok to ask questions and it is ok to CARE

    it is ok to CARE

    just like i have defended u here and there in the past – so too must i do for Dianrez – u r disrespecting her here and i say ENUF

    i also do this for u candy – this kinda stuff u been spinning here lately is not gonna serve u well down the road – many many many folks r watching

    remember Ideas and Concepts not peeps – i dare ya

    thanks

    peace

    patti

  387. handeyes
    Dec 11, 2010 @ 01:31:05

    Heye Joseph –

    ive been raising the question of the appropriateness of AG Bell Association having Advanced Bionics as one of its Circle Alliance Founding Partnerships not because of guilt by association but rather because:
    – like any sponsor or endorsement or alliance – do u want it to be with a company, product, or celebrity etc that has done wrong?

    its not good pr, its not good publicity, its not good ethics, its not good practice especially in light of the fact that AG Bell has billed the purpose of their Circle Alliance to be that they and their partners (Advanced Bionics and Cochlear Americas) share similar values and want to work together to promote independence through listening and speaking etc

    if they have learned (and i dont know if they know of the latest recall because when i called CEO of AG Bell Association – Alexander Graham after the Advanced Bionic and Cochlear Americas fines to ask them for a statement about how they felt about their Circle Alliance partners being fined for wrong doings related to CIs, the CEO replied that he was not aware of that) sooo if they have learned about the latest recall – what is their ETHICAL responsibility as an organization that serves Deaf and Hard of Hearing infants, children, adults and their families

    shouldnt they be sharing the recall notice?

    shouldnt they be offering support?

    shouldnt they be be sending out a letter to their members and our community about the AB and CA fines and recall and what it means to them? (i finally see that the did mention the recall in their Dec 9 update 24 DAYS after the recall was announced – odd how they could pump out a press release denouncing free speech and peaceful assembly during the same day of a rally but they cant update their members about a recall until 3 weeks + later)

    if they can muster a letter to send to Pepsi for a ee blink of the eye commercial that only aired for one bloody day out of the year and object to the showing of folks using ASL – ya think they can send something out about AB and CA and why they are partnering with them

    cuz frankly i HATE to think about what those shared values and goals are ???

    also its important to note that folks today are held accountable – if Imus insults female rugby players – he apologies even if he feels he was misunderstood – he steps up to the plate and says “my bad”

    yeah he largely did it cuz the sponsors were pulling from the radio station and cuz the public outcry but he did it

    tiger woods got cut from alot of his contracts cuz what he did in his private life reflected badly on their products

    A G Bell and Advanced Bionics and Cochlear Americas joined up for an Alliance – both of these major cochlear implant companies give AG Bell association thousands of $$$$$$$$$$$$ for this alliance – what do they get in return?

    some might debate – should not AG Bell Association as an agency serving Deaf and Hard of Hearing people be unbiased and neutral and not in alliances with cochlear implant companies????

    re: its up to AG Bell association to decided who it wants to get all warm and fuzzy with – definitely their choice and option – i just hope to goodness sake they are informed and not ignorant

    ie if i call them tmw and say about this LATEST recall and the hot failures by Advanced Bionics – Alexander Graham doesnt say – “im not aware of that” (while the vp interpeter signs to me “it sounds like he just put you on speaker phone” oh really – hmmmm wonder why?)

    the ALLIANCES are much more than a case of guilt by association

    peace much

    Patti

  388. handeyes
    Dec 11, 2010 @ 01:40:54

    mcconnell

    wow u really cant discuss concepts and ideas can ya?

    notice – its a questions ; )

    i have given ALOT of latitude with what topics and ideas and concepts we are discussing here but i have also given the boot to some folks or a tap on the fingerclicking hands to a few

    but as this thread gets longer and longer – lets just see if u can stick to a concept and a topic and not degrade urself with the banter

    i know i know it is mighty hard for a pundit

    why oh why am i always asking for the impossible

    oh i know why

    cuz me like to jump at de sun

    come on mike – one two three – jump

    contribute something of content and substance

    “i think u can, i think u can, i think u can….”

    Peace

    Patti

  389. handeyes
    Dec 11, 2010 @ 01:52:39

    because knowledge is power and folks wanted more information on audism – here is a link to a listing of other links of vlogs sharing examples of audism and other information

    http://audismfreeamerica.blogspot.com/2010/04/resources-on-audism-and-linguicism.html

    peace

    patti

  390. Dianrez
    Dec 11, 2010 @ 01:57:57

    Wouldn’t it be awesomely effective if AGBell were to take a public stand and demand investigation of both CI Circle Alliance partner manufacturers for their misdeeds? It could do much good and advance the art of the cochlear implant a hundred leaps ahead by threatening to pull their backing.

    Deaf people would benefit tremendously as consumers if they had this powerful consumer advocacy working for them.

  391. Candy
    Dec 11, 2010 @ 02:08:26

    Dianrez..

    This is Patti’s blog and my first comment touched on the same thing I’m challenging you with, what was her true intent in doing this post. She could block me from the very start if she wanted to. The things I have questioned you applies also to Patti. I’m not discussing you nor Patti, per se. I’m not getting personal. I’m questioning your and her intent. I guess that’s way too hot for you guys to handle.

    It’s nothing compared to AB2072 because what AB2072 is about is ensuring parents are informed of all communication options. I have a personal interest in it as do you and anyone else who are deaf/hh. AB2072 involves ALL deaf people as well. CI does not necessarily involve all, because some deaf people do not have any interest in it at all. Whereas AB2072 is about ALL communication options. Of course Patti claims she is not neutral. Exactly. She is interested in only anything that puts a bad light on CI because she thinks there is a lot that is being kept from her and the rest of the public. Some kind of a conspiracy. Maybe there is and maybe there isn’t. The burning question is what’s her true interest in it? Sincere? or just her bias about CI? I think we know that answer.

    Let me see, the topic of this post kept yawing off left and right, up and down.

    What is the topic exactly that Patti wants to focus on? What ideas exactly? Like how axdism has divided? Or is it about Lane and his view that constantly divides the deaf community?

    What do you hope to see come from discussion of these ideas? UNITY? or DIVISION?

    Either way, I don’t care what Patti does. If she wants to boot me off, she can. It is, after all, her blog. I’ve been telling that to her since eons ago.

  392. Jean Boutcher
    Dec 11, 2010 @ 02:24:53

    Candy wrote:
    “I first saw Tom’s video on DR. A long time ago. I’ll see if I can find it.”

    Do you refer DR to DeafRead? If so, how come I have not seen it since I joined DR in 2006. I would greatly appreciate it if you would provide the link.

    Actually, Humphries’s unpublished “audism” was expanded in Lane’s book, The Mask of Benevolence.

  393. mcconnell
    Dec 11, 2010 @ 02:28:30

    Oh, Patti, but I have!

  394. Joseph Pietro Riolo
    Dec 11, 2010 @ 03:13:08

    To counter your example of Tiger Woods, there are many celebrities that did questionable things and yet, the sponsors and supporters did not leave them. Ms. Miley Cyrus came to my mind. There were some inappropriate things that she did. Yet, her popularity has not nosedived and she still has a lot of support from all fans. Some players in sports made criminally high salaries and yet, fans almost absolutely had no problem with that. People don’t react to questionable things in consistent (and logical) manner at all the times. They apply one standard to one person but apply a different standard to other person.

    I am not really interested in judging AGBADHH without any concrete evidences. I don’t have any general ideas of what alliance involves. If there is evidence that AGBADHH is paid not to criticize Advanced Bionics, bring it on the table. If there is evidence that AGBADHH does not want to badmouth Advanced Bionics due to alliance, bring it on the table. If there is evidence that AGBADHH is constrained due to the alliance with Advanced Bionics, bring it on the table.

    Lastly, Advanced Bionics is far from evil. Certainly, it did make a settlement with FDA. But, that is it. I would rather want to hold my judgment until there are more evidences that it does unethical deeds.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  395. Candy
    Dec 11, 2010 @ 03:50:25

    Jean..

    I looked and can’t find it. I’m thinking, uh oh, my bad..that was probably not Tom H. Because when I checked AFA’s website where Patti has the link, the picture does not match what I saw on the video. I don’t know if Tom’s looks changed over the years or whether he had a beard back then. Not too sure if it was on DR either, not positive. But the A word was explained from start to finish. If I come across it, I sure will post it here. Audism Unveiled, was that something that was shown to the public and later on sold on DVD like the Greatest Irony? I’m not even certain if that is what I saw.

  396. Candy
    Dec 11, 2010 @ 03:51:39

    JPR..

    One does not bite the hands that feed them. I think AGB would be smart not to get into it. But, if they do, they would be sincere in their word/action.

  397. Candy
    Dec 11, 2010 @ 03:52:50

    I’m curious…

    Discussing AGB and AB, are they ideas or concepts? Or are they opinions?

  398. deafnicity
    Dec 11, 2010 @ 05:09:08

    Candy – The very nature of hypothesis testing involves taking a guess or what Collins described as the irrational foundations of rationality. Hopfully the guesses are built upon previous research, but they are still guesses. That doesn’t diminish the importance of the scientific method.

    As for noting that I will be seeing D/deaf folks – That is simply a written description of something that would not need to be said when signed. Trying to tear that apart — wow what a waste of time.

  399. deafnicity
    Dec 11, 2010 @ 05:24:31

    I’be been thinking about this idea of people being called audists. not all day of course as that would be waste of my time. But i did think about it long enough to consider how to make a point without posting a long explantation – quite simply — IF THE SHOE FITS, WHY NOT?

  400. mcconnell
    Dec 11, 2010 @ 06:10:30

    Deafnicity,

    “Hearing loss” is not a label. It’s a description of a condition that describes any level of hearing loss. YOU DO have a hearing loss. There is nothing imprecise about that. It’s a fact. If you want precise then it’d be about decibels.

  401. Dianrez
    Dec 11, 2010 @ 06:50:19

    Hearing LOSS requires using a HEARING yardstick. Anything less than normal hearing = LOSS.

    Deaf people do not use the expression “hearing loss” since they never had hearing.

    That yardstick has been used to deny d/Deaf people opportunities and still is today. As a tool of audism, it is an expression best avoided when one wants to examine abilities, not deficiencies or disabilities.

    Leave it to the audiologist who wants to measure decibels, or the doctor who wants to evaluate against the hearing yardstick. But keep it out of the popular lexicon where LOSS is a negatively charged term.

    The Deaf population has the right idea: start where they are and go on to achieve GAINS. Not from a LOSS perspective.

  402. mcconnell
    Dec 11, 2010 @ 08:45:50

    Dianrez,

    Um, “hearing loss” isn’t an expression. It’s the total or partial inability to hear sound. Either a person has a hearing loss or does not. No yardstick here. No one is asking how much you can hear (i.e. decibels).

    Secondly, you have a one track mind. There are thousands and thousands of deaf and hard of hearing people who were once full hearing. Perhaps you are familiar with the term, “late deafened”? Even “post-lingual”? Yep, they did have full hearing but now have only partial or no hearing left. They certainly experienced hearing loss. And they do have a hearing loss.

    You take advantage of what you have or don’t have and make it a positive one. I take advantage of what hearing I have left and make the best of it and enjoy it. I see that as a positive gain. Isn’t learning a musical instrument a gain?

    Sure it is.

  403. Tim
    Dec 11, 2010 @ 09:36:27

    I ran the comments through a word counter and it looks like if it is 300 words per page, we are at something like page 280 of the book! Congratulations, I guess 🙂

    There are lots of noise here, but I’m also surprised with the amount of gems in there. I guess I’ll chime in with my thoughts:

    1. Anecdotes do NOT make statistics. For every gloomy stories out there, there is probably many other happy stories. For every happy stories, there are probably many other not so happy stories.
    2. However when you see a person who has suffered, simply saying ‘twit happens’ to those people really doesn’t cut it. Where is your heart? Do you really care about all people? Love doesn’t say ‘twit happens’ and writes it off — no love would be asking questions to figure out how we could have avoided it. Likewise, love would delight if a person experiences success even if it was obtained using an approach that it finds disagreeable provided nobody else is hurt in the process.
    3. In science, almost nothing is ever ‘proven’. We have theories that manifest itself after coming true after several cycles of experiments, and generally speaking, we use that to build ‘evidences’ for something.
    4. Simply because an scientific study has never been done to verify something does not mean that it is not true. I think this is critical in today’s society: there is no big money to be made in natural cures, so nobody funds experiments for it — but there are big money to be made by developing a drug for that ailment.
    5. Even more frustrating — sometimes piles of anecdotes testify against what the official statistics or scientific study are saying. In those cases, I think you need to ask some hard questions about first — is your sources representative of reality. For instance, a deaf person who is anti-CI is more likely than not to hear from unhappy CI users, whereas one who is pro-CI is probably more likely to hear from those who are happy. Second — were those data and the associated conclusion really honest? In Pharmaceutical, it has been shown (I think there is peer reviewed papers out there on that topic) that drugs routinely do much better in clinical trials than they wind up doing once they are patented and prescribed to consumers. I wonder why that is? If CI companies are of the same ilk as a number of pharmaceuticals, could they be hiding relevant data?
    6. I might be assuming something I shouldn’t a bit (Candy, please correct me if I’m wrong) — considering that almost all CI studies were done by, well, the CI companies or their collective pawns, how is it hurting anybody to have an independent study conducted? What is the harm in the call to have FDA investigate CI’s more closely. We aren’t even asking for a ban of CI, we are just trying to get some study done by somebody that both sides are willing to accept. If CI companies really do have a good product, and really do care about the CI users then I think it should be their motive to see their product tested — independently, and thoroughly. The fact that they are fighting this calls into question their true motive, does it not?

    Consider that failing ugly sounds like a logic error on the part of the CI device. Whether it is logic circuits in the hardware or a software driven one doesn’t matter — the point is that logic error couldn’t be fixed without replacing the implant. Since I’m a computer programmer, I know a bit about this. Failing safely is not a new thing by a long shot — sophisticated alarm systems are supposed to be designed to fail in a safe way if power is cut off or similar. Yes, believe it or not, thieves do try cutting the power to the alarm in order to break into something. Most alarm systems are designed to foil such a tactic.

    Here’s the thing that concerns me about this — I really don’t feel like they train computer programmers well. First, many times programmers are just those who like computers, not somebody who has the analytical rigors of a mathematician (or even musicians). Mathematician and musicians were the ones who were programmers back in the 70’s, when computers were still new. I think there is rationale for saying that CI devices should be wired and any associated software programmed with the rigors that approaches formal verification. The whole idea behind that system is to systematically (and in a mathematical way) prove that the program or system wiring actually does precisely you want it to do. Personally I think things like pacemaker should have the equivalent of formal verification or better — because if it fails, someone could die.

    Now, if they have problems like this…I think that they have people designing the system at AB who do not truly understand how to make truly reliable, robust systems. I kind of doubt they use anything like formal verification. Here is a story of why I think that, and it totally freaked me out a bit.

    A couple of years ago, I read a programming book that I think every programmer should read — Code Complete II by Steve McConnell. By chance later on, I did a google search for some subject discussed in the book. Lo and behold, I saw some paragraphs that I thought I read from that book coming up in google books. That would be alright if it was snippet from CC II, that I had just read. But no…it wasn’t, the title of the book had something to do with programming Medical devices. I did a double take, opened up the book, and discovered that on google books, that the medical book had plagiarized whole section from Steve McConnell’s book. TRUE BUSINESS! I emailed McConnell to notify him, and got a surprised response from the author saying to the effect of wow, that is quite a plagiarism.

    Now, if the people who write the books to describe how to program for MEDICAL devices (which I’d hope has low failure rate) need to plagiarize from somewhere else, I’d wonder if they really do know the material.

    Furthermore, often if you apply rigorous techniques to prove its correctness, that means you couldn’t have as many features. Now, think back to what Candy said — she prefers Cochlear America’s CI over AB’s CI because the former has better track record while the latter has more features. I’m not the least bit surprised.

    But that isn’t the only thing — even if you don’t use formal verification, quality should be a prized attribute of any work that involves lot of logic. Lot of times — especially in the first few years as a programmer — it is all too tempting for programmers to deny that an error is due to their work. What’s more is, when they test something, they don’t intentionally and systematically try their hardest to break it. Most of the time, programmers tend to go easy on their work because they think it will work fine. The funny thing about that is…the mindset necessary to thoroughly test something, and truly look for ways to break it needs to be trained in the programmer. It might also be that it is linked to honesty — especially intellectual honesty. I don’t think our schools truly do a good job of it.

    Given the appropriate discipline to actually do a thorough job — how much more time does it take to do the testing? Surprisingly — many times it does not really take any more time. It is simply an issue of tenacity, attention to detail, and not being lazy as in trying to get minimum amount work or testing done in order to meet the company’s requirements and deadlines. Many times, if you have the tenacity when you test your code, you are already less likely to make an error that the test would catch in the first place.

    That said, I can, however, think of situations where programs or logical wiring doesn’t cause this — like if somehow the circuitry got harmed, but I think CI devices have durable protective layers around it to make sure that never happens. Physical breakage, electricity jumping from adjacent wires when it shouldn’t, and so forth is more in the realm of engineering than mathematics, though. Engineering is more in the scientific realm, even though it utilizes math. In science, there is no complete guarantee, but engineering makes it possible to reduce the likeliness of problems.

    I do have my theory as to why there seems to be a lack of intellectual honesty necessary to make people actually seek out answers to that “what could possibly go wrong” question. I think it has everything to do with the fact that throughout most of the 90’s, people were taught to always be optimistic, and to bring up problems was seen sort of as making trouble. The people who lived through the Great Depression and World War II had seen MAJOR problems — especially those who experienced the former. They had seen whole economy collapse because too many people thought they could borrow to invest (margin — sometimes leveraging 10 to 1). They spent their whole life always at the guard of “what could go wrong” even though they always did set their eyes on having pleasant life — living the American dream. But those people died or retired out of the workforce, and replacing them are people who by and large had never experienced systematic problems, and are much less likely to always make sure that every single piece of work is sound. This phenomenon is not isolated to CI companies, by a long shot — I believe it is widespread.

    It is widespread enough that I think every single one of us ought to examine ourselves often to make sure that we aren’t ignoring inconvenient evidences. That we aren’t glossing over things that might truly matter down the road. That we aren’t sticking to a certain view simply because we want to be on the same side, or opposing side of somebody else. “Us vs them” mentality really should go. What’s more is, I think it is unacceptable to tell somebody “look, I’m right” when they change their mind to agree with you — this isn’t a competition. The search for truth should be a collective, collaborative effort.

    -Tim

  404. handeyes
    Dec 11, 2010 @ 11:30:57

    re: AG Bell

    yep – i do not know why they are not calling for an impartial investigation into the longterm safety of CIs (physical, emotional, social, cultural, etc)

    it would be so impressive to see them do so and would speak volumes

    re: celebrities – which was the weakest of the examples i cited but i did cite because its the most familiar in the general public and thus the most public – probably the most telling point is that SOME FOLKS DO SO SHOUT OUTS WHEN THEY SEE THAT STUFF HAPPEN

    so why the silence within the Deaf community – and by silence i dont mean conspiracy theory silence – i mean why is it there are not more folks standing up civilly and justly asking questions about this alliance? like folks in the general population do for just about anything – everything and everyone is pretty heavily scrutinized in the general public these days so why is that when some folks ask some questions about somethings re: the Deaf world other folks RUN to defend, distract, defame, and distort????

    my VERY LIMITED knowledge of miles scandals are that some of them when they were a DIRECT and PROVABLE did result in some loss of support or sponsorship for her

    the fact that she can remain a star – well its 2010

    clinton remained president after monica

    and AG Bell will remain an organization even if it does severe its ties with Advanced Bionics and even if some of the PROOF you are rightly calling for does surface

    re: EVIDENCE – yep and amen to that and how would the evidence ever become manifest without our asking questions?????

    good question

    and how can we make things evident when AG bell itself claims it is so utterly clueless?????

    and even if there is no evidence of it being a type of hush money alliance or a kick back kinda alliance (and i truly hope it is not) they still have an ETHICAL responsibility to examine their endorsement and liaison with corporations that have been fined on behalf of the FDA and Dept of Justice for wrong doings

    yes this is me opinion and me opinion counts cuz a persons a person not matter how small

    so somebody help me out – find out Advanced Bionics and Cochlear Americas get in exchange for their big ole donation to secure this alliance?

    it is clear that AG Bell Association gets oodles and noodles of cash but what do they Advanced Bionics and Cochlear Americas get in exchange? (Pls note that Cochlear Americas was fined $880,000 by the Dept of Justice as a result of a suit brought forth by a whistle blower (someone that worked high high high up in Cochlear Americas) that revealed that Cochlear Americas engaged in kick backs – ie was giving gifts and incentives (point systems) to doctors, audiologists, clinicians, practitioners in the field of deafness in exchange for their pushing Cochlear Americas brands of cochlear implants

    just noticing

    just observing

    just remarking

    just inquiring

    just quest i on

    and just noticing who is minimizing, deflecting, avoiding, etc

    HENCE and im sorry to say this cuz i hope this too is not true but HENCE the reason why some folks (and no not me) have jumped to the conclusion that some of the folks who are so quick to defend or distract folks away from discussing CIs – they might be getting some benefits from their little hornets nets work on the world wide web

    yep i have seen folks ask this

    yep i have seen folks imply this

    and yep – it is a an idea that is freaky and frightening to imagine

    cuz deceit is not sweet

    and i would readily say no way and come on but…. i have read about the whistle blower within the Heath Care industry that recently revealed a great many truths with proofs about how different insurance companies tried to silence Michael Moore the filmmaker and his film Sicko

    to push him off a cliff

    u can google it folks

    and one of the ways they did this was to PLANT “grassroots” bloggers and commenters all over the web to use repetitive types of slanderous / libelous words against moore and and his film sicko

    which is pretty dang sick

    and pretty much in sync with this quote:
    “Make the lie big, make it simple, keep saying it, and eventually they will believe it.”

    u can google who said this

    so i am hoping that is not the case with our wee little puddle of a blogsphere – im hoping that some of the folks that keep slapping around the lable of “extremist” “deafhoodized” etc are not doing this as some type of weird “friend with benefit” because frankly they are ineffective and their benefits should be recalled as a result of doing such a poor job

    seriously the term audism would never have gotten the visibility or usage it has today if not for so many folks trying to slander it

    seriously the concept of Deafhood would never have gotten the popularity it has today if not for so many folks trying to malign it

    so if their is any time of malicious kickback plot it is back firing big time

    and i dont believe there is at all but i can see why some folks sometimes suspect their might be

    the really cool thing about Michael Moore’s situation is that despite all the efforts of the insurance company to destroy him and his film – he has gained in his credibility and recognition

    the film did enlighten and inform and did influence policy – not to the full extent that it could have had not the insurance company been engaging in such deceit to silence free speech but it did and the best…

    a person who worked within the bowels of that deceitful system found his moral compass and came forward

    i totally admire whistle blowers – wow

    that is amazing really

    lastly re: Advanced Bionics being evil – i have never said that and im sad that u said it even if its in the context of arguing against it

    but i would strongly urge you Joseph to read the Hearing blog entry – from what i could gather in general the Hearing blog is pro Cochlear Implants and pro Hearing. Even they have GRAVE concerns about what Advanced Bionics knew and when and how much Advanced Bionics is sharing and not sharing and how they are going about it

    so time to put our reading glasses on, boot up, and get busy finding those facts that you so justly call for

    the trouble is some of them appear to be buried deep sixed etc and will require the stirring of some folks moral compass to get them dug up hence we seek to make the INVISIBLE VISIBLE

    cuz it is much easier to go about deceit when things r silent

    http://thehearingblog.com/archives/65

    scroll down to the bullet points

    this is a VERY serious question and one i asked way up up up at top

    how do the babies tell us if a CI is failing hot when they cant even sign or speak yet?

    or when they can but no one will listen?

    and i am NOT trying to sensationalize this to mean that all CIs are failing hot but as i have stated many times many ways

    a persons a person no matter how small and we have an ETHICAL RESPONSIBILITY to ask these questions

    i do not smoke nor have anyone in my immediate family who is a smoker but i got a right to ask questions about cigarettes

    i do not own a gun nor have i known anyone who has been harmed by a gun but….. my vested interest in their safety comes from the fact that:

    “My humanity is bound up in yours, for we can only be human together.”
    Desmond Tutu

    i have NO idea why some folks in this thread seem to be calling for the turning of a blind eye on some truths

    i totally have been opposing the over sensationalizing and misrepresentation of CIs on both ends of the spectrum

    i do not know why some folks keep insisting that we should not care about the CI issue hmmmmmmmm maybe i do know but i just dont want to see it – DANG

    peace

    patti

    PS: RE: AFA pulling of a vlog – i assume you mean of a Deaf woman who had a CI and explained how she was not told she was getting a CI and instead she thought it was a trip to a museum and much more. This woman later asked that the vlog be taken down because she did not want her parents to see it and feel hurt.

    i dont know of any other vlog that AFA has ever pulled

    RE: AFA’s site not having comments – neither does AG Bell Associations – odd how you dont make note of that, eh? But you are neutral and unbaised ; )

    i know i know it is debatable

    are we having fun yet?

  405. handeyesi
    Dec 11, 2010 @ 11:54:44

    candy

    because u framed ur little misrepresentations of me with ???? instead of declarative and because u kinda shifted from Dianrez to me and we all know i have a mighty high tolerance when folks try to diss me – im gonna let u stay around

    i will let u know that ur whole yarn about why AB 2072 was of ur vested interest and why CI should not be of mine is pure baloney

    smile

    just me opinion and i am the queen of this blog and my goodness look at me kingdom – it is mighty lengthy is it not

    now i will give ya another piece of advise cuz i do love u

    the problem with black kettles is:
    1. the pattern makes itself self evident and then everything u say hence forth is called into suspect

    2. the projection – meaning when u accuse others of things but really are massively guilty of it becomes more self evident to others

    3. it does brew a bitter tea me pal

    so while u have said malice is not your cup of tea i am starting to doubt even that

    while u have said “they are trying to silence me” i am starting to see that oh my gosh u have been trying to silence others

    while u have said “thats debatable” constantly whenever u r trapped in a spin u dont seem to see what u just said about Dianrez and me is COMPLETELY debatable

    while u have said “conspiracy over there” u do not see how other folks see u as being part of a conspiracy to divide the Deaf community

    its the opposite game and when it becomes really obvious it becomes less inticing
    for folks to play

    so keep coming back – until u cross the line that u like to skate so close to u – u r welcome here

    i do love u

    swallow some truths and see that it might do ya some good

    i aint never said CIs are all evil and folks that have or want them or choose them for their children are evil

    all i said was:
    1. hot failures concern me
    2. one death is too many
    3. we need more answers
    4. why is AG Bell in alliance with two CI companies who have been fined for faulty CIS and/or ethical wrong doings

    and more

    as already noted – i got lots of questions and the good news is i am getting more and more answers

    i do believe candy u will find a good measure of commUNITY building when u can shift from

    Disagreeing to agree to disagree to
    agreeing to disagree

    and yes i still hope that we can at least agree to disagree

    i havent seen it yet but i do hope

    much peace

    patti

  406. handeyes
    Dec 11, 2010 @ 12:49:02

    Candy

    let me know if u ever do see the awarding winning documentary Audism Unveiled

    peace

    patti

  407. handeyes
    Dec 11, 2010 @ 13:06:20

    re: shoes that fit or one shoe off or one shoe on – it got me thinking of the bloke that threw the shoe at Bush Jr in the Afghan custom of showing discontent

    talk about cross cultural conflicts

    it also got me some how thinking of Pablo Neruda’s Poem Ode to My Socks
    http://www.poemhunter.com/poem/ode-to-my-socks/

    i tried to find a version of it in its original language – spanish but all a quick search brought up was some U.S. students practicing their spanish with it in youtube and i cant judge as not captioned nor do i know spanish well enuf

    but the English poem is might nice

    i know i know i know wayyyyyyyyy off topic smile but when folks feed me good poetry and quotes me heart soars so maybe it will do the trick for someone else here – ya know – paying it forward

    peace

    p

  408. handeyes
    Dec 11, 2010 @ 13:10:54

    re: hearing loss

    not to cause anyone to blow a gasket but there is a push now to reframe with Deaf gain

    ie s/he has a Deaf gain of 130

    or seeking out students with a Deaf gain…..

    as for me myself and i – i do not say i have a hearing loss cuz i can not loose what i never had

    i was created this way – perfectly!

    smile

    i is partially Deaf

    “What’s in a name? That which we call a rose
    By any other name would smell as sweet.”

    oh gosh seems i gotta crack open some lit. today

    peace
    patti

  409. finlake
    Dec 11, 2010 @ 13:28:22

    Tim pretty much nailed it in terms of the ineptness being rampant in the medical industry.

  410. handeyes
    Dec 11, 2010 @ 13:43:41

    Tim

    Welcome to the never ending thread at “People of the Eye”

    i love u

    truly

    smile

    ur itemized points 1-6 – wow a thinking man

    i love it and thanks

    u love logic and so do eyes

    now re: ur more broader points towards the bottom – very cool

    i learned alot and i love learning

    re: programming, science, engineering etc yep

    i was shocked to learn how much of medicine is NOT an exact science – really shocked at how much deducing and guess work is involved – thankfully the human body runs fine on its own usually but when it goes mysterious OY not so much fun to be at the mercy of folks who are debating about what should be done

    re: the plagiarism thing – yikes wow

    hey have u read the Telephone Gambit?

    re: intellectual honesty

    very important

    re: the difference of past generations and present and the thrust for questioning and inquiry

    one thing that strikes me is how quick folks are to diss, attack, berate etc each other while simultaneously ignoring big systems or big questions and this happens on both ends of the spectrum

    me guess it is a case of the kicking the dog syndrome

    it doesnt fully explain the “wage the dog” stuff going on but it seems related

    both are neither the all of it but do seem to be part of the puzzle of why folks question less and attack more

    punditry and the me, me, me to the max dont really seem to help neither

    thank u for taking the time to read through for the gems and for contributing a few of ur own

    ya hoo – IDEAS and CONCEPTS

    peace

    patti

  411. handeyes
    Dec 11, 2010 @ 13:48:24

    Tim –

    this book might also be of interest – it was mentioned in one of the comments way way way up but not sure if u caught that given the volume here but based on some of ur thinking and questioning – i thought u might be interested in it. if u ever do read – would be interested in ur thoughts on it:

    Linda Komesaroff – Surgical Consent: Bioethics and Cochlear Implantation
    Publisher: Gallaudet University Press
    http://gupress.gallaudet.edu/bookpage/SCbookpage.html

    i havent read it yet meself – just a few of the chapters in it

    peace

    patti

  412. Joseph Pietro Riolo
    Dec 11, 2010 @ 14:29:39

    I do not oppose questioning everything. If one wants to make any speculations without waiting for answers, that is his or her business but I could not morally and ethically rely on speculations alone to form my opinions and judgments. Speculations are notoriously unreliable and are prone to errors or revisions.

    Why did not AGBADHH also send recall notice to its members immediately when it becomes available? That’s a good question. Is it because AGBADHH does not want to bite the hand that feeds it (as Candy pointed out)? It is still a question but it certainly looks like a speculation that is disguised as a question. If this question is asked in a court, it can be considered as a leading question if used in direct examination and can be objected.

    I love questions but not all questions are equal.

    In case I am accused of being apologist, I certainly hope that I can be shown what is wrong with my reasoning, logic and argument. Otherwise, I will just dismiss it as ad hominem attack.

    To Ms. Patti Durr, When I said that Advanced Bionics is far from being evil, I never implied that you personally thought that it is evil. You never said it, of course. It is my personal observation that the atmosphere of this discussion looks very hostile to Advanced Bionics which is why I wrote that. To even it out, Advanced Bionics is far being a saint either. Of course, I do not imply that anyone is saying that Advanced Bionics is a saint.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  413. Candy
    Dec 11, 2010 @ 14:51:54

    Tim..

    You asked is “your sources representative of reality”

    Basically, you’d have to ask Patti and Dianrez exactly who their sources are. Without knowing exactly what and who their sources are because they have never really gave out anything credible other than what they have shared online which are pretty much allegations of suspicions without any actual proof. Patti has shared this news release on AB. Prior to that, her sources (what I have been able to ascertain) are probably all suspicions because she has failed to provide anything. Patti, Dianrez and most of us on this thread are aware of stories, mostly positive coming from blogs or other online sources. DeafRead and DeafVillage host numerous stories about positive outcomes of CI as it relates to AV and being able to listen and speak. There isn’t too much of negative stories. However, there are several stories of set backs that has nothing to do with CI itself and has more to do with anatomy of the ear prior to being implanted.

    Patti has from time to time, posed her concerns that there is something out there, hidden from us. But, she failed to provide rationale for that or even any proof of that.

    I have no issues with any concerned entities wanting an impartial investigation into the cochlear implant itself. The safety of CI, in general, are as safe as can be, in my opinion. Are you insinuating that just because FDA approves a device, that it does not mean it is safe? If so, then shouldn’t we be confronting FDA as well? How many CI has been implanted in patients over the past 10 years? And, out of that number, how many deaths and injuries are there that is a direct link to CI?

    If parents and recipients are concerned, surely, they’d ask for an investigation into specific model, it seems like one would need a better rationale to demand an investigation on all CI companies.

    Exactly what did CI companies have to go through to be approved by FDA? Does anyone know?

    Patti and Dianrez have been a staunch support of Audism Free America. That group, AFA, had asked for an investigation into CI, not because there are real concerns but, because they view CI as an audistic device. What is their true rationale and motive for wanting the truth? Do they really want the truth? What if the truth isn’t to their liking? When they could not come up with any real evidence of cover ups by the CI companies, they pretty much have declared conspiracy. Ya know, I am amused with conspiracies and I am also much aware of the fact that some conspiracies are true and some are not.

    AFA had removed a video in which had anti-CI message. As did other extreme groups such as deafhood and deaf bilingual coalition. Their anti-CI messages are well known, and most have been removed due to the fact that they were confronted about these messages. Are their concerns borne out of a true sincere need to ensure all deaf babies/children or even adults are safe when opting for CI? Or are they really biased because they are truly anti-CI?

    Let’s look at AFA’s petition here, shall we?

    It demands that “FDA establishes an independent and impartial investigation into the long term physical, psychological, social and cultural impact of the CI into the bodies of infants, children and youth.”

    AFA does not show any rationale for it other than it appears (more likely than not) that the rational is audism. And, they demand that members of this impartial investigation include people from Deaf Culture! Why? because they are not really all about being concerned about the safety, per se but, rather “audism.” They said: “…even medical risks associated with the surgery do not appear to be fully reported.” They did not even explain how they have come to that conclusion. “do not appear to be fully reported.” how so? That is based on, what?

    AFA site also went on to say that “Many scholars have referred to the recent proliferation of cochlear implant surgeries coupled with the oral / aural only movement (prohibiting of signing and over-emphasis on auditory technology) as a form of eugenics that may lead to cultural and linguistic genocide of Deaf Americans.”

    So, you can clearly see my point, AFA also Patti and Dianrez, both whom are staunch supporters of AFA, only wants the investigation done, not to address the safety of the implants but to address the issue of CI being a discriminatory and oppressive device.

    Y’all can scrutinize AFA’s site and see for yourself:

    http://audismfreeamerica.blogspot.com/2009/06/afa-petition-to-fda-for-investigation.html

    Oh, and AFA’s site does not allow for any discourse. Just an FYI.

  414. handeyes
    Dec 11, 2010 @ 15:05:39

    heye finlake – re: nails

    it reminded me of the song – If i had a hammer (which u r way to young and way to hip to know of im sure)

    If I had a hammer,
    I’d hammer in the morning
    I’d hammer in the evening,
    All over this land

    I’d hammer out danger,
    I’d hammer out a warning,
    I’d hammer out love between my brothers and my sisters,
    All over this land.

    so thanks for conjuring up that note from ur note to Tim

    Joseph

    ah here u go again making me love u

    really u r super cool some times in how hard u think

    re: speculations – i understand ur point and i totally thank u for clarifying it

    it seems to me in this long long long thread we have folks who have been jumping very quickly to the defense of CIs and chastising inquiry about them and we have had other folks jumping very quickly to vilify CIs and chastising any support of them

    but we have also had some very good folks listening and learning and inquiring and for that i am VERY grateful

    re: being accused of being an apologist – only one person planted that seed pal. pls dont stoop to mike’s speculation / implication / warning / suggestion / planting that somebody is gonna call u an apologist when in fact no one has

    see how he does it?

    u r smarter than that and better than that

    much peace

    patti

  415. handeyes
    Dec 11, 2010 @ 15:41:04

    oh Candy

    u go girl

    re: AFA’s petition – thank u for posting the link

    i have posted it several times in this thread but hopefully now we can actually have some folks read and discuss it

    the safety of CIs includes cultural and linguistic rights of a cultural and linguistic minority

    see what the ICED 2010 Vancouver new agreement had to say about denying children sign language

    so since CI at times are coupled with oral / aural mandates for family rooms and classrooms – FDA gotta look into if this devices is impacting a culture and a language group

    yep they do and they have done so in other cases i believe – looked at if any bias or harm to the social, cultural, and linguistic target audience was in place

    ah the whole child

    re: “Deaf culture” – oh girl when u take things out of context it kinda reminds me of a bloke who tried to spread a myth that CAD bylaws removed hard of hearing from their by laws when in fact the word still appeared 11 times in the bylaws. Was so sad to see that the owner and operator of DR had actually believed that conspiracy crap and the falsehood as “evidence” of the great Deafhood conspiracy to take over anything relating to Deaf folks – website aggregators, schools, organizations, bylaws, homes, households, wardrobes (get ur hoodies folks) to which i had to reply IT APPEARS IN THE BYLAWS 11 times

    the thing with spin is folks THINK

    – if u say it folks will believe u – and sadly some do

    – if u “select” just a wee bit here and there folks will believe u – and sadly some do

    (yes i saw how you chopped out one middle sentence from a blog comment a million years ago and dragged it into ur own blog entry as if it would prove anything BEYOND the fact that u is a spinning)

    so the AFA petition – pls read it folks

    “who are knowledgeable about Deaf culture”

    it is asking for expertise in that area to be part of the panel because…… it has thus far been lacking

    re: AFA wanting ALL the answers?

    yep they do

    now u should know that some folks would prefer to go stronger – would prefer instead of an independent and impartial investigation into CIs they would like a outright ban or at the very least a call for a moratorium until answers are gotten

    re: me myself and i – i have been mighty clear about the facts of who and what i am and why i do what i do

    candy – u have not been so clear

    u clearly have a BIAS

    u clearly are NOT NEUTRAL

    (added note; i know, i know – these two statements are debatable by u)

    but it is not clear who or what u r aiming for and why except to be antagonistic

    and i can think of better hobbies

    again as i have told u in the past – if u r willing to open ur eyes and see with ur heart – u will actually see that i am a kind fellow

    that i am a good fellow

    that i am a fellow traveler on the planet and ur continued effort to paint me (and Dianrez oh please) out to be some kinda extremist shows:
    – desperation
    – illogical thinking
    – and that perhaps there is a need for a truly radical group
    – and my desire to be worthy of being called an extremist of love (i am not there yet but my feet be on the path)

    https://handeyes.wordpress.com/2010/07/21/what-kind-of-extremists-we-will-be-qqq/

    so paint away oh Candy

    the picture u paint of urself is becoming clearer and clearer

    and just an fyi for the masses. i am no longer active in AFA simply due to other commitments and focuses but as long as AFA remains committed to direct peaceful and just confrontation i support them

    (NOTE: i say this re: “peaceful…” because i make my pledge to any group or action contingent upon it being peace based so its not like im implying something about them – i just add this note cuz speculation is not just me speciality ; ) but rather may be that of the projectionistic type)

    peace

    patti

  416. Dianrez
    Dec 11, 2010 @ 16:07:45

    McConnell, one track minds are interesting, they think they see themselves in other people.

    GAINs certainly includes use of devices (tools, remember!) and learning musical instruments, and LOSS can mean more to those who indeed have lost something. We agree on that.

    My point was not to start from a DEFICIENCY viewpoint, but from a healthier viewpoint, THE WHOLE PERSON and continues from there.

    Certain people and occupations find it more useful to focus on the DEFICIENCY or LOSS aspect and some make their living doing so. Examples: physicians, surgeons, audiologists, apologists for the hearing-IMPAIRED.

    These specific occupations are limited in time and scope. Yardsticks are short term tools. A deficiency viewpoint is too limited to support lifelong growth.

    This is why the Deaf community is growing away from hearing LOSS and hearing-IMPAIRED concepts. It may be a more useful concept for the (d)deaf community, or the HOH or LD communities, though. It probably explains the divide in one way; and why one group leans to audiologists and doctors and the other group leans to teachers and trainers. One is a short term, less distance to travel to simple restoration; the other is long term and involves far more approaches.

    Nothing wrong with either orientation, that is the beauty of diverse approaches.

    Wishing you well on your HEARING-IMPAIRED orientation. No insult intended. Just making it clear I don’t think that way but recognize the application of your way.

  417. finlake
    Dec 11, 2010 @ 16:42:32

    I gotta go out and do some plowing. ‘sides I wanna play with the new toy (snow blower).

    Anyways, uhm… just a quick note… Tim’s post got me thinking, and it’s relevant. It may seems to be a deviance, but it isn’t. Most companies are interested in the minimum cost of overhead to make a product with maximum cost of profit. It does make sense… so I wouldn’t say all companies are evil or a saint, as JPR put it out so well.

    It would not surprise me if the idea of minimizing the cost of overhead has trickle down to the sacrifice of safety measure of any devices to maximize the speed to take it to the factory floor for mass production (if it applies) to get it to the shelves for the customers.

    I don’t think I need to remind you on the obvious — BP oil rig out in Gulf of Mexico.

    Therefore the mentality might be the same for CI industry, as well. This wasn’t meant to bash the CI industry, but since I’ve worked in factory as well as designing, I think I may have some merit in the idea of the making money with the least overhead cost.

  418. Dianrez
    Dec 11, 2010 @ 16:47:54

    Likewise, I am not a member of AFA, DBC, Deafhood or any other group, though see values in each that I agree with. Even a few in AGBADHH! By my remaining outside of such groups, my comments might carry more validity–ie. if they aren’t labeled and dismissed as “oh that so-and-so persuasion.”

    Here in this thread, we see that some will NEVER identify with the goals and philosophies that Deaf community people generally hold–that independence is not contingent on hearing; that (aided) hearing and speech are nice to have but not essential to success in life; subscribing to “Deaf people can do anything but hear”, that ASL is a cultural entity and a full-featured language in itself; that there are healthy values in these concepts, etc.

    How do we regard these people? There is the wider Hearing and (d)deaf communities; why not go there and leave the much smaller Deaf community alone? Why come here and try to silence those who ask questions about the industries that make a living off all of us?

    They feel we are dangerous and might upset their cherished concepts about hearing being important and perhaps even convince the Hearing community of our view. They might fear that we would succeed in limiting development of aids and implants. They fear we might cause a shrinkage of their options or divert focus to benefit just Deaf people.

    That’s similar to some Deaf people fearing that the CI would cause a decline of the Deaf community, deterioration of Deaf Culture and disappearance of ASL. In 25 years, that hasn’t happened.

    But the paranoia still runs both ways. The divide that Alexander Graham Bell fostered still exists. The sides don’t trust each other and cling to their divergent values.

    When will we finally realize that we’re all in this together? Maximization of our diverse abilities. Assuring the quality of what the industries give us, ALL of them, including the education and rehabilitation industries. Fostering future development in ALL ways. And educating the Hearing community not to look at us in terms that divide us according to hearing yardsticks, but in ways to see us as part of their community, as individuals, and equal to everyone else.

  419. deafnicity
    Dec 11, 2010 @ 17:58:59

    I suppose this discussion will motivate me to go look at the current mission statement of AGB. If there is a public contradiction between their actions or inactions and the mission statement it might be worth noting. Other than that it would seem to be a waste of time for me to think that they would hear me no matter how much they pretend they do.

  420. Joseph Pietro Riolo
    Dec 11, 2010 @ 18:15:43

    I totally agree that it would be great to have a systemic, consistent collection of incidents relating to the failures of cochlear implant so that we can have the total picture. No incident should be dismissed or trivialized, no matter how small it is. However, it is easier said than done. Just imagine how much time, effort and money are required for the enormous task of collecting, documenting and analyzing the information. I will mention three ways of getting information to see how much work each requires.

    1. Encyclopedia of incidents. This is somewhat like Wikipedia where each incident has its own page. Each page will explain the incident in details that can give any reader a complete picture of the incident. Then, an analyzer is needed to assign the correct taxonomical (or categorical) code or name to each incident. Problems with this method: People with cochlear implant that fails or that does not work need to be found and once found, they may not be willing to share their experience. It will be difficult to maintain their total privacy if they ask for it. Taxonomy needs to be developed. Analyzers need to be trained so that they can assign right code or name to each incident. Software needs to be developed to collect data and create statistics based on it. There has to be a group of people who must maintain the information on a secure server and protect the integrity of the information. Information needs to be maintained not just for few months but for many years. No matter how much information there is in encyclopedia, it will be always one-sided because no information about the success of cochlear implant is collected.

    2. Snapshot of incidents. One way to get a snapshot is to invite all people with cochlear implant to questionnaire. Then, the researchers can analyze the information and provide a snapshot of the non-working cochlear implant. Problems with this method: Questionnaire needs to be developed. Very large number of people is needed to make this successful. For example, if there are 100,000 people with cochlear implant, the study will need at least 10,000 people (10%) to fill out the questionnaire. They would expect total privacy and making sure that no person fills out questionnaire more than once is difficult. Then, there is a problem with sample bias. How can it be assured that the sample is spread over the population equally? Protection of confidential information about them is very important and it will be costly to protect the information. Although this approach can give a good idea of the ratio between success and failure, it is still just a snapshot. The snapshot may lose validity or relevance few years later. So, this study has to be done annually which brings me to the next method.

    3. Longitudinal study of incidents. This is same as the previous method but it is done every year. The researchers will be able to measure the changes from year to year. Problems with this method: It will be difficult not to lose any people from each cohort every year. People in the study need to remember to inform the researchers when they move so that they can receive questionnaire every year. Whenever a person forgets or does not want to fill out a questionnaire, a link is broken and it may be discarded. This in turn reduces the sample size which is not desirable. Every year, new people are needed for the study. Questionnaire needs to be developed very well so that it will remain consistent over years. Confidential information needs to be protected at all costs. Storage and integrity of information must also be protected. Very large sample size of new people is needed for every year so that in case some people choose not to participate in the study, the decrease in sample size will not have any adverse effect on the statistics.

    As I wrote above, it is easier said than done. Someone or a group of people has to do it.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  421. Joseph Pietro Riolo
    Dec 11, 2010 @ 18:44:26

    Given that my career is in software development including programming, I am familiar with many things that Tim wrote in his comment. I just want to add that FDA’s website has a lot of information about medical devices starting at http://www.fda.gov/MedicalDevices/DeviceRegulationandGuidance/default.htm . I happened to find the document about software validation at http://www.fda.gov/downloads/MedicalDevices/DeviceRegulationandGuidance/GuidanceDocuments/ucm085371.pdf .

    To inject a trivia just for fun, I want to mention that there are about 1,451 words ending in –ism when I checked http://www.onelook.com recently. So, it is almost impossible to avoid the –ism. 🙂

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  422. Candy
    Dec 11, 2010 @ 18:48:48

    Dianrez..

    do you realize the hearing community faces measurements from their own kind in every way imaginable every day? Everyone experiences this, regardless if they’re deaf or not. It is a dog eat dog world. Woe is me isn’t going to get anyone anywhere. That’s human race for ya.

    JPR..

    What you just outlined makes more sense. It makes more sense to do one of the three. Definitely not what AFA has proposed.

  423. Tim
    Dec 11, 2010 @ 18:55:32

    finlake — I think the mentality is generational. I don’t mean to knock on the generations running the show (mostly baby boomers and generation Xers right now). I pointed it out in the medical industry, but I could just as easily point it out in the financial industry, and even within the government (like TSA making security policies that doesn’t really work — a piece of my post I cut out because it was off topic).

    Patti — I guess I’m going to defend Candy a bit here. There is not a soul on earth that is completely free of bias or completely neutral. That is part of the reason why I don’t bother to assert that I have no bias, or that I’m neutral on any subject — and I notice you tend to do the same.

    Candy:
    In your post, you made a few points I agree with. But you also made some points I don’t agree with.

    First, I think you are right that a strong underlying motivation for this petition is audism. However, I don’t think that is necessarily a bad motive. Replace audism with racism, and it doesn’t look so bad, does it? I’m not arguing that audism exists or does not exist, I’m simply pointing this out in hope that you would be able to see where the other side is coming from if you don’t already.

    Second, you said “and, they demand that members of this impartial investigation include people from Deaf Culture!” Again, I disagree with you that that is a bad idea. I actually have a non-Deafhoodized reason for thinking that. I’ve recently ordered a book called “When Helping Hurts: How to alleviate poverty without hurting the poor and yourself”. It is a Christian book (yes, I’m not ashamed to say that I’m a Christian) that details how to best help the poor. A friend of mine has been posting some thoughts while reading this book on his blog — and I’d like to refer you to one of them:
    http://freeconvection.blogspot.com/2010/10/when-helping-hurts.html

    The basic idea in the principle pushed forward in the book is that we should always work WITH the people in helping them as opposed to FOR them. In another words, you need to put the poor people in the drivers seat in deciding for themselves how they want to improve their life. It is often difficult for the privileged to yield control to the less privileged, and to avoid doing everything for them. It is also difficult for them to not pay for things that they could easily pay for for the sake of the other person’s independence. However by doing so, you preserve their dignity, encourage their independence, produce the best long-term outcome, and actually help more with less resources.

    Now, look back at your statement. If you are implying that Deaf culture should NOT be involved in studies or other efforts to improve life for Deaf people, I’d say that based on a poverty alleviation book, you have it completely backwards. It should be the opposite: we should always put the people we aim to ‘help’ in the drivers seat. For hearing people to decide those things for us, and to exclude significant chunks of Deaf people from the process is a violation of that principle.

    The author of this book has been involved in community projects and has done his studies. As a matter of fact, this is precisely why often NGO (non-governmental organizations) working with people in 3rd world countries tend to have far better outcomes than government programs that simply bring truckload of food without regard to how the people prefer to live their life.

    -Tim

  424. Candy
    Dec 11, 2010 @ 18:56:08

    I want to make something clear, Patti says she is no longer active in AFA but she supports them. Dianrez claims no membership. Truth is, there is NO membership base for anyone to join. You either support them or you don’t. You also either donate or you don’t. There isn’t a form to fill out to join nor pay membership dues. Just wanted to clarify that.

  425. Tim
    Dec 11, 2010 @ 19:04:16

    Oh Candy, I forgot one another thing. It is my current view that *someone* really should do some sort of study on the ‘whole person’ outcome of each pathway. However, I’m unsure how much I trust the FDA to do it, or if such a study (which is quite broad as to involve sociological aspects) is even within the scope of an agency responsible for approving/disapproving medical and food products.

    I do support the idea, or better said — the spirit behind it. However, I do think it is within the FDA’s scope to examine the effectiveness of the CI as well as the adverse outcomes from a medical viewpoint.

    Perhaps a better approach is for the AFA to petition the Congress to set up a commission to study the sociological (whole-person) outcome of CI or other deaf-related stuff so they could set up reasonable laws to serve as guiding principle on this matter.

  426. Candy
    Dec 11, 2010 @ 19:17:09

    Okay..

    That’s much better Tim. 😉

    I was going to say that FDA does not get into investigation on some of the things that AFA is demanding, it’s not part of their scope.

    This here is what I was going to post…

    Tim..

    I think you’re confusing some things here. AFA isn’t asking for a study, they are asking FDA to do an impartial INVESTIGATION that covers areas that FDA do NOT get into. And, that would be cultural aspect of deaf people. This brings out another topic which I think will just further complicate this whole discussion because I do not see deaf people having an ethnic culture but, yet I do see them having a culture based on commonality on behaviors. Not wanting to go off track. I think what JPR proposed is best. It makes more sense. AFA and the extreme right deaf community members are not flexible with accepting all ways one can choose to be deaf.

    FDA does not do these things, investigate the cultural aspects of a product they approve. Nor do they get into the psychological aspect of how a CI affects a person.

    As far as the book you’re referring to, I will say that I do understand that and have seen it happen. Again, it is a tough world out there. Would be nice if things happens where people actually go out of their way to help others, and there STILL are people like that out there. Christians and non-Christians alike. Gosh, another reading material to look over. I scanned it over…will read more on that later..

  427. Candy
    Dec 11, 2010 @ 19:21:02

    JPR’s idea is awesome…(I really want to emphasize that…don’t want that momentum to go away)

    The question here is who is going to do it?

  428. mcconnell
    Dec 11, 2010 @ 19:41:41

    Dianrez,

    Saying “hearing loss” isn’t necessarily a deficiency as if it detracts from a person and make him/her less as a person. No. It’s simply an acknowledgment of a fact based on a condition that a person has less access to. Nothing more. A person can still do much more despite that, obviously.

    Many people do view the word “deaf” the same way the word “blind” is used. What would you envision about a particular person if a friend said, “Yeah, I have a friend who is blind.”? Do you immediately imagine a person with a cane or something similar. But then you find out this blind friend wears glasses for his 20/40 vision.

    The word “deaf” has a deficiency to it as well. It does represent a loss or access to sound and not a gain.

    So, the next time people come up to me and ask “Are you deaf or hh?” I’ll just say, “I hear pretty good.” And focus on the gains instead?

    *shrugs*

    I’m confident in myself. I’ve no need to worry about those things and wring my hands over them. I do have a hearing loss. It’s a fact. I make the best of what I have. I don’t feel the need to nitpick.

  429. mcconnell
    Dec 11, 2010 @ 19:51:51

  430. Ann_C
    Dec 11, 2010 @ 20:00:02

    I’m just curious. The Hearing Blog that issued the article “Fail Ugly” and “Fail Ugly II” that are mentioned as links in the article and in a comment has a moderator by the name of Dan Schwartz. He seems to have some knowledge of engineering or programming, not sure which, but he seems to know a lot about the model involved in the failures just mentioned.

    I think the impetus behind a request for an impartial investigation of CI failures should come from those who live the CI experience themselves. I wonder what Dan Schwartz would think?

  431. deafnicity
    Dec 11, 2010 @ 20:08:46

    Damn – just lost a message I tried to post. Will try again. I would hope that at some future time both sides of the CI issue would foucs on the issue of informed consent. I have always maintained that a person who is considering a ci for themselves or for their child should find a professional statistician who has no vested infterest in the decision to be made by the candidate or their parent. i would hope that the candidate or their parent would ask the indepdent statistician to critically examine the numbers that the ci manufactuers provide in their literture given to candidates. Find out what the numbers are saying or not saying. Follow up by writing letters to the CI manufatuer to see if they can provide answers to any questions raised in the numbers. See how well they answer. Now if they start citing further studies – be wary of any not published in a peer reviewed journal where the author has to state if they have a conflict of interest. Being an employee doesn’t stop publication, but that conflict of interest or source of potential bias is identified. If they delay their responses remind them of how they claim how important the timeline of implantation is. This is a reasonable compromise as the ci advocates should have nothing to fear, the ci opponents will have to live with the results and most importantly the candidate or their parents can make an informed decision. If the candidate or the parent are lazy in their research, then the uninformed decision to get or not get a ci is something they have to deal with.

    But in regard to the AB situation where decisions have already been made to have a candidate implanted, pressures from both sides of the issue should center on the health of the patients and not whether a ci is medically, ethically or morally right or wrong. That is sad that the division between advesaries prevents them from agreeing to agree that the health of the patient comes first — and without slamming the other side. Once the decision is made – you can’t undo ci surgery. As much as Tucker wants to compare ci surgery with a colostomy, some colostomies can be reversed. I am not aware of ci surgery being reversed. So it seems to me that making noise about surgeries already done is silly. Making noise about how AB and AGB and NAD?) have or have not responded to the issue is fair play when the rhetoric hits the fan.

  432. Tim
    Dec 11, 2010 @ 20:27:52

    I like JPR’s ideas. I guess the question is who should do it — it doesn’t necessarily have to be the FDA (and possibly shouldn’t be).

  433. Candy
    Dec 11, 2010 @ 21:43:15

    Perhaps this can be a joint effort by several well known organization that serves the deaf/hh such as NAD, Hands and Voices and AGB?

  434. deafnicity
    Dec 11, 2010 @ 22:13:52

    Ann C – certainly those with the ci model being reecalled have the greatest interest in an independent investigation. However, I would argue that this is a moment in which the opportunity exists for unity instead of more division. AB admits to a problem though their legally sanitized announcements admit to no error. Here is ABs real problem. Even if they correct the problem this is different than changing the spread of the electrode array in order to improve performance. This isn’t even an issue of non-performance. This is an issue that is life threatening. Surgeons and hospitals are going to look at the history of AB products and decide they want nothing to do with them as the risk of lawsuits will be greater than the benefits the hospitals get. Capitalism at work. Cochlea America won’t have to give kickbacks as their competition is shooting themselves in the ass. People who don’t have ci pushing for an investigation does not harm the cause of those with ci wanting an investigation.

  435. handeyes
    Dec 11, 2010 @ 22:52:47

    wow

    on topic

    CONCEPTS and IDEAS

    wow

    im typeless

    kudos ya all

    Joseph – ya rock with those ideas – can i repost them as a new blog entry giving full credit to u and see if we can migrate over there to work out the nuts and bolts of some of it????

    purity please – the length of this thread is killing some folks and is a tedious scroll on the iphone?

    biggest thanks

    re: the issue of CONSENT –

    this book might be of interest:
    Linda Komesaroff – Surgical Consent: Bioethics and Cochlear Implantation
    Publisher: Gallaudet University Press
    http://gupress.gallaudet.edu/bookpage/SCbookpage.html

    just a note re: division etc – in the book Martin & Malcolm & America: Dream or a Nightmare by Cone – one of me favorite books – i was shocked and surprised to learn of how many different civil rights organizations there were in the 1950s and 1960s and how many differences of opinion and tactics and goals they had but often they would manage to solidify for solidarity purposes over some common goals and interests and that was GRAND

    “failure is impossible” said susan b anthony who didnt live to legally vote

    peace

    patti

  436. Ann_C
    Dec 11, 2010 @ 23:13:40

    Deafnicity,

    1. CI recipients call for an impartial and independent investigation of CI failures.

    2. The deaf community comprising of culturally Deaf, hh, and related organizations calls for an impartial and independent investigation of CI failures.

    3. The medical community calls for an impartial and independent investigation of CI failures.

    4. The cochlear implant manufacturing industry calls for an impartial and independent investigation of CI failures.

    Which message will be given more weight by the federal government? I don’t think anybody has to guess which one will be considered most carefully, the CI recipients are the most impacted group of all. I’m not saying anyone who doesn’t wear a CI doesn’t have a right to call for the investigation, just that CI recipients have the most credibility. Ideally all four groups should act as one, with groups #2,3 and 4 supporting the CI recipients’ call. Dunno about #4, some industries are particularly lax for not self-policing their own.

  437. deafa
    Dec 12, 2010 @ 01:57:33

    gingerism do exist. And it exist by my very own business owner Father-in-law. He told his wife (which she told me) that he would not hire a redhead. She was shocked and said, Your own son is redhead. He did not respond to that. He was serious.

    And my aunt… she says she doesn’t trust any redhead.

    yep.
    people judge and stereotype based on their haircolor. It’s worst in UK as I was told.

  438. John S.
    Dec 12, 2010 @ 02:35:35

    Handeyes,

    Yes, that is an interesting document. The shift towards equality seems to be like many other items in that they occur *before* they are officially recognized or acknowledged by society or by governmental bodies. However, that recognition is still important in that many do not personally believe something until it becomes official. To discuss your favorite parts –

    Many have acknowledged the right of minority groups to exist without assimilation into the larger society. It is the view that this right does *not* exist that has been troublesome for minority groups of various types. The larger society indeed benefits when the minority group is seen as valid. Should the official recognition of Deaf *not* occur the existence of the group will still occur. Therefore, it is beneficial to both Deaf and society as a whole to recognize the validity of the group. By recognizing the validity of the group recognition of the validity of the individual is furthered.

    Because the resolutions of the Congress of Milan have been shown to be in error it is reasonable to reject them. These resolutions were based on prejudice and misunderstanding of the validity of Deaf. These resolutions were a selective abstraction of the prejudice that existed at that time. Fortunately, these were resisted by many persons. The inclusion of sign language into the curriculum of many educational institutions are a de facto validation of sign language.

    The equality of the participation of Deaf citizens in the governmental functions are seen in the use of interpreters at legislative hearings. However, this is not the end point of the participation. To me, this is a beginning. I testified at a legislative hearing by a committee deciding the funding of interpreters. There were many opposed to this! Why would *anyone* be opposed to the funding of interpreters when that funding allows for greater participation in government by a larger number of citizens? Further, Deaf citizens may have valid points to make that no one else has thought of. By not having interpreters available we would be furthering the poverty of ideas that sometimes occurs.

    That is true, parents of Deaf need to be given resources that they can use to further the life of a Deaf child. The parents may not be aware of the resources until they ask (governments are not required to give this unless it is asked for). Should the parents not be familiar with the resources they, the child, and society as a whole benefit from this sharing of information.

    Should the parents not be familiar with signing and/or the Deaf community they *may* sense isolation. However, when they know the resources that are available the responsibility is theirs to actualize the resources. This then would be helped by the governmental system knowing who and how to contact. While the responsibility for contact with the resources are that of the parents there is still the possibility of the parents being ill-informed or misinformed. As a result, the resistance of the parents may need to be countered by contact from the agency.

  439. handeyes
    Dec 12, 2010 @ 02:39:38

    Deafnicity and Ann_C and Candy and Joseph Dianrez and Tim etc looks like we got a plan – maybe finally at long last a common goal to shoot for eh?

    we will see see

    deafa

    geez that really shocks me – i mean i have been picked on a plenty due to me hair color and i have also been ga ga overed cuz of it but i really didnt know folks have been discriminated because of it

    so shall i deny that such a thing exists cuz i havent personally been a victim of it – nah

    so shall i deny that any word should exist cuz i am sick of -isms – nah

    so shall i muck with the spelling of it – nah

    so shall i minimize it and say well if they just dyed their hair or tamed it down a bit like i do – nah

    so shall i say well its a non-red head world out there so they should just suck it up and …. – nah

    so shall i say – NOT COOL folks – not cool judging folks be the color of their skin or their hair or workings of their ears instead of the content of their character

    not cool

    i must say deafa – what u have written i have seen folks say about Jewish people and African American people and i even saw it said about Deaf people and Hearing people

    makes me shake my head and whisper a prayer and say – why do folks get so nutty

    pre-judice aint cool

    thanks for sharing

    gosh i just keep learning

    not sure if u saw this link to an article from the BBC on gingerism in the UK
    http://news.bbc.co.uk/2/hi/6725653.stm

    peace

    patti

  440. deafnicity
    Dec 12, 2010 @ 03:41:16

    Ah Dang just when the thread was staying on thread you had to mentin Milan and the the current reject of milan values. URK – i’ve been thinking about that all day because the post deaf advocates would have us believe that deaf are no longer considered subhuman — yet all they have done is dismiss physical inferiority and replaced it with cultural deficiency. i described that briefly in my article as laissez faire audism. And then i got to thinking today – what wuld be the equal to jim Crow racism if i compared laissez faire audism with laissez faire racism. Then i got hit by the thought Milan audism. More on that in the article that is brewing. Ah but before Milan audism what was there? Augustinean audism?

  441. Dianrez
    Dec 12, 2010 @ 03:50:34

    It certainly sounds likely that we are coming together on a consensus: asking FDA or a similar agency to open an impartial investigation into cochlear implants, their manufacture, quality control, programming and error checking as well as long term effects in several aspects.

    Candy, the CI consumers may have the most interest in this investigation, but the most valid and credible group would be ALL deaf, Deaf, HOH, LD, and other groups of hearing-different people pushing for this investigation. Why? Full numbers of present and potential consumers have the most weight.

    What concerns me is that the FDA may not be the best agency, the most resourceful or the best equipped one. I learned in university that the FDA is essentially a clearing house for information.

    They receive and catalogue information from many sources–industry, sponsored research (funded by the manufacturers of drugs or devices), independent research, peer reviews, and reports of incidents or adverse effects that were either voluntarily made or compiled from physicians and hospitals. If a clear pattern of harm is discovered in collecting this information, they may recommend or issue a ban on the drug or device. They do no research on their own except for reviewing materials.

    They may clear a drug or device for the open market based on research submitted to them…which may initially be only from the manufacturers or sponsored research funded by these manufacturers.

    Still, the idea of an independent and impartial review is an excellent idea and wayyy overdue. Let’s get started.

    First step: get the national consumer organizations such as AGBADHH and NAD and universities serving the deaf to get behind a proposal to create an independent agency to review where we are now, where we need verification or where we have gaps in the evidence, and what questions need answering.

    The proposal could include funding requests for FDA, or from its overseeing department. Staffing could include persons suggested by the excellent respondents in this blog, and questions drawn from here as a beginning.

    We could find many areas of agreement among ourselves and among the agencies representing the communities for this inquiry, just because we agree the long term goal is to have better designed, safer and reliable models of the CI.

  442. Ann_C
    Dec 12, 2010 @ 04:22:35

    It has to be the FDA, as dianrez said, it’s the clearinghouse for approval/ disapproval of drugs and medical devices.

    If a CI recipient initiative starts the ball rolling for an independent and impartial investigation of the currently manufactured CIs’ performance rates and safety, followed by support of the deaf/hh community, such effort can probably get the FDA and Congress to sit up and listen.

    I am wondering if CI recipients have thot much about this, apart from registering dismay over the two AB HiRes 90K models’ failures, that more oversight needs to be done. After all, the fail-uglies don’t look good, health-wise, with potential to damage the cochlea further and other yet unknown side-effects. Re-implantation can be a trickier issue after such complications.

    Deafnicity,

    Augustinean audism? Lol, you’re talking about a sociological history of audism before Milan? Thot Paddy Ladd covered that.
    Audism is old as the hills, long before the word was coined. 😉

  443. Joseph Pietro Riolo
    Dec 12, 2010 @ 04:44:26

    Hi Ms. Patti Durr,

    It is perfectly fine with me that you can use my comment or the ideas within it for your new post. I do appreciate your offer to give me full credit but it is not a requirement.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

  444. deafnicity
    Dec 12, 2010 @ 06:34:44

    Ann after re-reading my post I see a great got left out in my effort to be brief.Thanks Yes, Ladd and many others have poiinted out audism as existing well before Augustine. Certainly it is debated as to whether structural equalities come before or after the discriminatory isms. I tend to think before and see the isms as being created to rationalize strutural inequalities. So i would of course see audism in Augstines time as different than during industrialization, and post industrialization. This is needed because there are those who claim that audism no longer is an issue as people don’t see deaf as sub human anymore — See Fernandes and Myers article in Winter 2010 volume of JDSDE. And then of course there are those clinging to the postdeaf hypothesis of Lennard Davis. They too claim that audism is no longer an issue worthy of any strategic emphasis by deaf scholars. So there is apparently a need to revisit the importance of not seeing audism as an ideology that has been constant since the dawn of human evolution. It has evolved as well. Whether that ideological transformation is structurally driven is what I was thinking about. Wasn’t trying to invent a wheel that already exists.

  445. Trackback: Call for info about CIs « PEOPLE OF THE EYE -…first, last, and all the time” – g. veditz 1910
  446. handeyes
    Dec 12, 2010 @ 14:31:04

    Hi Joseph

    big thanks for the approval

    ive started a new thread –
    https://handeyes.wordpress.com/2010/12/12/call-for-info-about-cis/

    im in a rush but will come back to comment here and there later

    to all of u who have been contributing to this very very long thread – i thank u

    for all of u who have been visiting – thousands of u – thank u for visiting and for thinking

    forward march

    jumping at the sun we be

    peace to all and love – love is cool too

    patti

  447. DeafSweetMind
    Dec 12, 2010 @ 17:25:00

    http://www.facebook.com/permalink.php?story_fbid=117127561685879&id=100001114299192&ref=notif&notif_t=share_reply SO THERE! CI is very dangerous for all humanity especially Deaf båbies/children if you mind. That is why I will never change my mind ever since 1999. I knew I was doing the right thing to stand up for many good reasons about CI device itself. Mind you, people who do not think twice about our Deaf Mental / Physical health.

  448. DeafSweetMind
    Dec 12, 2010 @ 17:26:55

    http://www.facebook.com/permalink.php?story_fbid=117127561685879&id=100001114299192&ref=notif&notif_t=share_reply SO THERE! CI is very dangerous for all humanity especially Deaf babies/children if you mind. That is why you cannot change my mind ever since 1999. I knew I was doing the right thing to stand up for many good reasons about CI device itself. Mind you, people who do not think twice about our Deaf Mental / Physical health.

    LEAVE DEAF BABIES AND CHILDREN ALONE, Will you please let them be who they are. These kids have their rights to have their own soul, mind and body to stand their own boundry to be protected. So be it! No one have the right to invade their own body properties because it s NOT belongs to you, parents, or anybody.

  449. handeyes
    Dec 12, 2010 @ 18:21:33

    re: post-deaf apologists / advocates

    i saw this bumper sticker today –

    “I’ll be POST-feminist in the POST-patriarchy” kinda fits what u seem to be saying Deafnicity

    http://www.cafepress.com/electionblues.20608436

    re: a very recent CI explant surgery. Would be interesting to learn more about the type of CI and the mold on the metal factor.

    new thread: https://handeyes.wordpress.com/2010/12/12/call-for-info-about-cis/

    over > 445 comments in this thread
    over > 4,00 visits to this blog since nov. 23 when this blog entry went up

    ya done good folks

    hope u will consider explanting some good topics / concepts / ideas covered here over to ur own sites

    be well and i thank ya again

    Peace

    Patti

  450. Jean Boutcher
    Dec 13, 2010 @ 01:47:15

    Deafnicity wrote: “Ladd and many others have poiinted out audism as existing well before Augustine.”

    Based on the information found on Gallaudet’s online, “Timeline,”
    audism was existent in Israel in 1,000 B.C. — 700 years before Aristotle and 1,000 years before St. Augustine, Bishop of Hippo. Hebrews did NOT allow deaf Hebrews to own any property.

  451. Trackback: 2 for what? Gallaudet’s new appointments « PEOPLE OF THE EYE -…first, last, and all the time” – g. veditz 1910
  452. Andy Paterson
    Dec 28, 2010 @ 13:26:08

    I have a CI after spending most of my life using HA’s – high-power ones at that! – they prob damaged my ears a bit more than a CI failure is ever likely to – but thats the nature of life – we all use cars but I don’t see anybody demanding we stop using them when one crashes and someone gets hurt – millions of people die in the things and we STILL keep using them.
    Why are CI’s any different – on the HIGH balance of probabilities a CI is much more beneficial than risky.
    I’m tired of the old chestnut about the amount of money HA/CI Co’s make – they hardly compare with something like… wal-mart or sony or even Microsoft! of course not – their market is TINY! if any company has a tiny market (especially since what it makes is mostly hand-built) then you betcha in order to make a profit its going to charge a lot.
    I feel sorry for Sonovo (they are better known for their Phonak HA’s – some of the Best!) – it looks like they didnt pay “due dilligence” before taking on AB. But AB is stifled by american consumer laws (which I find amusing being a brit and usually on the receiving end of american “protectionism”).
    I also get sick of hearing from the american “anti-CI” deaf culture brigade – go back where you came from – the first part of the last century.

  453. Trackback: Is Candy’s question valid? « PEOPLE OF THE EYE -…first, last, and all the time” – g. veditz 1910
  454. Dan Schwartz
    Jan 10, 2011 @ 04:03:13

    Hello all.

    I’m Dan Schwartz, Editor of The Hearing Blog and author of Failing Ugly: Advanced Bionics cochlear implant circuit goes haywire and
    Failing Ugly II: More on the Advanced Bionics Recall, and I’d like to bring all of you up to date on our investigation of the Advanced Bionics HiRes-90k implanted electronics module failures.

    Right now, just bits and pieces are trickling in, as AB has pretty much gone into lockdown. However, one piece of manufacturing information has been divulged that is absolutely stunning: The lack of any completed unit burn-in.

    What is burn-in, why is it important; and most saliently, how it could have prevented this recall.

    Since my third article in the series is “in the typewriter” I’m going to be lazy tonight and simply give you the wikipedia article on burn-in, as it’s pretty close:
    http://en.wikipedia.org/wiki/Burn-in

    Also, the article references a “bathtub curve” article which has a flaw:
    http://en.wikipedia.org/wiki/Bathtub_curve
    The red “infant mortality” curve is correct, as is the yellow “wear out failures” at the end of the service life. However, the area in the middle is third should be much longer, as infant mortality is a matter of a week or two; and wear out is measured in years, even decades for CI implant electronics.

    I’ll post here when the third article in the series is published.

    Also, to the blogger who runs this site, please contact me either by leaving a comment on The Hearing Blog or via email at Dan at Snip period Net

  455. handeyes
    Jan 10, 2011 @ 12:26:51

    hi dan

    thank u for ur comment and for all u r doing to get the facts re: the Sovona Advanced Bionics failing hot recall

    very important

    note: i modified ur email to have at and period because otherwise more spambots get attracted to this site and also i dont want u go get hit with alot of spam.

    i did email u as requested

    i thank u very much for this info and the links. So if i understand the basic heads up u r offering is that if the manufacturers of Advanced Bionics HiRes 90K had heeded the wisdom and sound reliability practices of engineers and recalled the importance of the bath tub curb they would have done a burn-in exercise with the device but they FAILED to and the result is that some of the devices have been FAILING hot inside folks heads. im not trying to be shocking or graphic but rather clear and compassionate cuz it does sound mighty painful and serious

    im looking forward to ur update entry as i know it will educate me as ur past ones have done and thank u for being willing to come back here to post the link

    re: the lockdown – WOW

    just a note – the “infant mortality” lingo can be pretty alarming to folks but i recall seeing it in one of ur earlier “failing ugly” entry threads and understood it to mean – that the product / device fails quickly(as in the infancy of the device – this phrase has NOTHING to do with any babies actually dying but just of the device – correct?)

    just dont want folks getting confused cuz its a pretty easily sensationalized issue and we are aiming for truths and facts and many folks are not schooled in engineering terminology

    again i thank u dan

    peace

    patti

  456. Dan Schwartz
    Jan 15, 2011 @ 04:32:14

    BREAKING NEWS: Advanced Bionics lays off 150 employees in the wake of the FDA Recall, including longtime field support staff. Details to be posted as they become available…

  457. deafa
    Jan 15, 2011 @ 16:51:36

    patti, can you set your comments in order of newest to the oldest? I have to scroll all the way to the bottom to read the latest comment?

  458. handeyes
    Jan 16, 2011 @ 20:54:00

    deafa

    this is a great suggestion but: (sorry for the but but…)
    1. im unsure of how to do that and
    2. i think it will “apply all” and then all the blog threads will be recent to last and i really like folks at least having to scroll down past all the discussion so they can follow it instead of just jumping in at the end but for this thread i TOTALLY understand why ud want it on this particular thread

    if i do find a way to do it and apply it only to this thread i will do that

    thank u again for the suggestion

    peace

    patti

  459. Trackback: Breaking News re: Sovona’s Advanced Bionics « PEOPLE OF THE EYE -…first, last, and all the time” – g. veditz 1910
  460. Trackback: Sonova Advanced Bionics Confirms Job Cuts Due to Recall « PEOPLE OF THE EYE -…first, last, and all the time” – g. veditz 1910
  461. Dianrez
    Jan 29, 2011 @ 03:31:23

    This link is being added to the now-“archive” discussion, without comment:
    http://www.theaustralian.com.au/business/cochlear-windfall-likely-as-rival-stumbles/story-e6frg8zx-1225960438307

  462. handeyes
    Jan 29, 2011 @ 13:13:22

    heye dianrez

    thanks for making the long trek down here to add the link – i have put it in the body of the blog entry now too

    Andy –
    ya got a right to ur opinion no matter how faulty it be. folks do cry out for car safety me pal and we should be thankful that do other wise we could all be driving pintos ka boom. re: sovona not havint done its HW re: how problematic Advanced BIonics CIs have been – yep that wasnt so smart eh? but im sure they will be fine – they r a HUGE co and they have their niche in high end digital hearing aids in Europe

    re: US protectionism – smile

    re: going back from where they came from – oh lame. a dig just cuz u disagree with some folks

    me, andy – im just for ANSWERS and FACTS

    not turning a blinds eye on the truth

    not sure why u wouldnt be too or what century that puts u in but sounds like it puts u in the me me me “individualism” generation – at least that is what it looks like and sounds like to me

    peace

    patti

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