Cochlear Implants… Let’s Talk

Cochlear Implants… Let’s Talk

Yes, I am about to go where many good women and men have gone before

Yes, I am about to attempt to see if we can converse about cochlear implants (the device, the industry, the surgery, the recovery, the activation, the use, the lawsuits, the impact, etc) CIVILLY

CIVILLY

will see-see if we can do it

it is most likely impossible because there is a MIGHTY fault line that divides those in favor and those opposed

and there are a bunch of folks who sit on the fence

I am not neutral.  I will not pretend to be Switzerland here but I will try to be fair.

I have always had concerns about cochlear implants – their use, abuse and proliferation.  I have compassion and love for folks who have chosen CIs or parents who have chosen them for their children because I understand why they have done this and because it is not my place to judge

But it is my place and moral obligation to question and to seek out answers re: the safety of CIs – please see the Audism Free American petition re: CIs

http://www.petitiononline.com/AFA62509/petition.html

(this petition is a just and fair one that has over 1,000 online signatures and 300 by hand signatures.  Anyone who has anything to do with cochlear implants should want this independent and impartial investigation so we can have all the facts)

now there are folks who take STRONGER points of view against implanting Deaf children and say it is always wrong and bad and evil.  I do not support this rhetoric

there are folks who take STRONGER points of view in favor of CIs and say NOT implanting a Deaf child is wrong and bad and evil.  I do not support this rhetoric

For many many many years I took a detached policy of “to each their own” because when i expressed my concerns about the device, the practice, the system of implanting etc – the folks who have CIs took it very personally.  I did not want to hurt them.  I did not want to make them feel rejected and unloved so I went silent.

But then someone said – what about all the kids and folks who have been harmed by CIs – dont you care about them?  Why are you valuing the feelings of the ones who like their CIs over the folks who have had horrible experiences or who will in the future.

It was then i started to examine this gag order that we have put on ourselves – on our community.  This taboo topic.  But still i struggled with how to broach the subject of the DEVICE and the SYSTEM and not the individuals who have it or chose it for their children – HOW to NOT make it personal?

I have watched some really good v/bloggers make sincere efforts to engage in discussion on this topic to always see it go haywire.

So i dont know if People of the Eye is the right place for this discussion but after visiting Miss kat’s mom’s blog about her daughter’s 2nd implantation and difficult response to the activation & her follow up explanation – i revisited how this is a COMMUNITY issue and we need a COMMUNAL DIALOGUE on this.

so i invite ya all to come chat

what i ask first is:

1. come from love

no name calling (cyborg, robots, idiots, retard, moron, Deafhoodized, extremist (unless an extremist of love)

u can name actions or statements but dont saddle nobody up with a label except urself

2. no bull$hit

i have ZERO tolerance for b.s. – i can smell it a mile away and i ain’t having it here.  ill get my boots on and throw it right back at ya if needed or give ya the boot out the door

3. listen

there is much for us to learn

4. if i have scared you away with all these rules – my bad and im sorry.  I just really would love for us to come from love and talk about some of the truths re: CIs – what are our concerns, what have been our experiences, what are our questions, what we would like to see happen, what are our core value conflicts…)

Often audist systems and our own hostilities work hard to keep parents and Deaf people away from each other – id like us to thumb our nose at that systematic segregation and try a little integration here.

if folks think it is of any value – help spread the link as im way way off the grid due to being DeafRead free for a mighty long time and cuz i dont frequent CI chat rooms etc.

pick a truth any truth as u see it re: CI and put it forth firmly and lovingly and we will see where we go from there

if nothing materializes – we tried and it wasnt meant to be at this place at this time.

if u have read this far down – i thank you!

Peace,

Patti

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210 Comments (+add yours?)

  1. Don G.
    Aug 31, 2010 @ 05:24:33

    Good luck, Patti. Many have tried to open a dialogue, only to fail. Too much intransigence on both sides, with one side being too willfully blind to the facts. Will be curious to see how this goes.

  2. awkelstone
    Aug 31, 2010 @ 14:16:33

    Hi, I will pitch in later this week and see where this goes. Hopefully a good dialog will be the end result.

  3. Matt Hochkeppel
    Aug 31, 2010 @ 14:19:50

    I am all for it! Always try again and again til we finally succeed!

  4. Miss Kat's Mom
    Aug 31, 2010 @ 14:23:01

    I will start the hearing parent’s perspective with why we got our daughter a CI.

    My daughter was born hearing. Her hearing was taken from her by a doctor’s mistake. When we discovered she had a moderate hearing loss we automatically gave her hearing aids and starting signing with her. We felt like our decision was very simple, just give her everything. As her loss progresssed, her hearing aids became less useful. She was no longer able to access speech, and she was indifferent to whether or not she wore them.

    Eventually, her loss became “severe” and she became a CI candidate. At the same time she started to notice that she wasn’t hearing the things that she used to. She would squeeze a toy and wonder why it didn’t make the noise it was supposed to, and then look at me and sign “maybe broken?” She MISSED her hearing. My husband and I discussed it, and researched CI’s and then asked Miss Kat. We asked her if she wanted to hear better or if she wanted to just stay with her hearing aids. We told her about surgery (just a little) and told her that she would get a CI like her friend at school, or she could keep her hearing aids (like all the other kids). She told us she wanted to hear better.

    As far as expectations go, we never expected more than a return to the functioning shhe had with her hearing aids. We didn’t expect access to spoken language. We were wrong. She took off and has gained way more thean we could have imagined, and now we are just following her path.

    I believe, from my expereince that CI’s are very effective. I have met hundreds of children with implants and I know of 2 that do not get spoken language benefit from them, and both are them just plain don’t wear them and didn’t ever get follow up therapy.

    The device has a 90% rate of use. That is WAY higher than the 40% that hearring aids get. So that means that there are NOT thosands of people walking around not using their CI’s. I also believe that there is a great than 90% rate of “hearing improvement” with the CI vs hearing aids. That is slso very good.

    I don’t believe that every child should get a CI. If you aren’t going to do the follow up, I think you should NOT get one. It is a lot of work, stress and time, if you aren’t going to do it, it’s not going to be of benefit to the child. Don’t put them through surgery for nothing. BUT I do believe that by NOT giving them the device, you are making the choice for them. You are choosing that they will not be able to listen. You are choosing to deny them the benefit of easily acquiring spoken language. You are choosing lipreading for them, and a lifetime of speech therapy.

    Honestly, I think it is IRRESPONSIBLE for a parent to force a child to be oral with hearing aids. It is too much guess work. How are you supposed to use a language you can’t hear? CI’s are very different. Most children can hear and discriminate all sounds of speech with their implants, that was IMPOSSIBLE with hearing aids. I’m not a huge fan of oral only, but it does work IF the child can hear. But kids with hearing aids can’t, so it doesn’t work.

    So, that’s my 2 cents!

  5. Karen Mayes
    Aug 31, 2010 @ 16:03:21

    Let me think of how I can leave a message without ruffling anyone’s feathers.

    Hmmm… I in a way understand where Kat’s mom is coming from, since like Kat, my son has a progressive hearing loss (slower than Kat, David went completely deaf at the age of 12 years old.) Unlike the mother, I am deaf. My son LOVES his CI. His brain is “hardwired” as a hearing person, so he’s more of an aural learner than a visual learner, even though he goes to a Deaf school, socializes in Deaf community, etc. It’s a matter of meeting a child’s needs. I have another Deaf child, and she does not have CI, nor needs one; her digital hearing aids works just fine for her. She’s happy where she is now.

    As for “forcing”, etc… I don’t know the full story so I prefer to be quiet on this matter. BUT, I already made it clear MANY TIMES in the past, from the Deaf cyberspace… one sock size does not fit all. And yes, I have noticed at how CI’s marketing make it sound like it’s a miracle… CI companies need to present a balanced marketing, cautioning that it does not work for everyone, that anyone needs to undergo the candidacy evaluation, etc. I keep saying that CI is just a hearing aid, not a miracle fix.

    Oh well.

    Best luck with this dialogue.

  6. Dianrez
    Aug 31, 2010 @ 16:56:38

    I’ve gone from a position of being troubled by subjecting a healthy deaf child to surgery and to the intensive therapy that follows, to a position of being determinedly neutral on it.

    I still have questions on whether the stress and maintenance are worth it, and whether it is actually an accommodation to Hearing norms and limited benefits rather than the opposite alternative: the Hearing world accommodating the Deaf community’s wish to have a language and a community of using it everywhere just as foreign communities raise their kids in their own language.

    This is colored by an oralist upbringing which I wouldn’t wish on anybody else. There are pros and cons in oralism, however, and I know of people that have succeeded in it, just as you may know of successes with CI’s. It just all boils down the the individual and his or her strengths and weaknesses and ability to interface with the available devices and therapies.

    I admit to being chicken and running for cover whenever anybody asks me about the CI. There is, to me, something fundamentally wrong about altering an individual when it isn’t necessary for life and health, and more wrong when it adds stress and challenges that compete with a need for education and appreciation for life itself. Arguments can be made, but basically, it is accommodation to hearing norms and lifestyles. Knowing my own biases, I’m not going to be able to discuss it with the parent on the fence about CI’s. I’d be willing to discuss it with society in principle, however.

    The principle being: how far is society willing to accommodate those who are different and have much to contribute just as they are? Is society going to regard them as “less” when they don’t feel that way? Is society going to impose requirements that they meet the standard before they can participate?

  7. K.L.
    Aug 31, 2010 @ 18:11:37

    I understand both sides. I have studied both sides. I strongly believe that it has to be the decision of the deaf individual if they are older than age 5 or 6, and the decision of the parents if the child is an infant or toddler.

    The issue should be discussed within the D/deaf community, but only for educational purposes. Nobody has the right to make these decisions for the individual or the parents.

    My daughter was born hearing. She lost it as an infant to meningitis. She missed sound, and that was easy for us (her parents) to see. We chose the implant to:
    A) give her back as much hearing as we could that the illness took away.
    B) make the obsticles against her as small as we could.
    C) not let her hearing loss isolate her from extended family.

    We fully intended to give her both verbal language and sign language. It was never a question of not accepting her, or conforming her to societies standards. It was making her life easier. I saw all the frustrations many D/deaf people complained about. I knew we could not make a dent in how the hearing world viewed people with hearing loss. The only tool we could give her was the implant.

    She loves hearing. She loves having the ability to sign. She loves being able to take off her processors when she wants to. In short, she is a very happy confident kid who can easily function in either world. Why anyone would object to that ability that I have no idea. The bottom line is that without the cochlear implant, she would only have sign, not both.

  8. Miss Kat's Mom
    Aug 31, 2010 @ 21:44:56

    I agree with KL. If my child can now function in both the hearing and the Deaf world, isn’t that a benefit? Shouldn’t I give her ALL the tools she could need? Why would I deny her the ability to hear when I *could* choose to give it to her?

    That’s where I stand…

  9. handeyes
    Aug 31, 2010 @ 22:53:39

    thank you all brave souls for coming and sharing your points of view and experiences

    just want to let folks know that the “function in both worlds…” jargon can really set folks off – well ill just speak for me – it is irksome and insulting to imply that folks who do not Hear or Speak do not “function” in the Hearing world. We do function – we do – here is a link to my little rant about it way back when Jodi blogged about it
    https://handeyes.wordpress.com/2008/03/05/news-flash-deaf-people-without-ci-can-function-in-a-hearing-world-gasp/

    i know u didnt mean no harm by it – i know when u said it u didnt realize that the statement could be interpreted to mean that u think we “can’t function” in a Hearing world and really we do every day in many ways.

    I believe it was Greg Hlibok during the Deaf President Now (DPN) protest in 1988 said something along the lines of “it’s not that we are not ready to function in a hearing world, it is they are not ready to function in a Deaf wold”

    this is majority / minority status – cross-cultural conflicts. It may seem easier and more doable and more “beneficial” in the long run to change the child to be less-deaf than to try to expect extended family members and the general public embrace the diversity that Deaf ASL folks have to offer. It does put a hefty burden on the child no matter how well her/his CIs work.

    So if we can stay clear of using the word “function” and believing that its superior / more desirable / right / better / a must have to Hear and Speak – i think we will go along way in this discussion

    I am very glad that the parents who have commented thus far are providing and encouraging ASL for their Deaf child.

    Couple of questions:
    – what are some of the short comings you have experienced with the cochlear implants
    – what did you wish you had known before the implants or after them
    – what do you think a parents’ role is in recognizing some of the harm that has been done to Deaf people who had bad implants (some of them or faulty, some experienced complications, some did not yield positive results etc despite folks doing all they were supposed to do)

    – does seeing someone with a CI trigger a personal response if so what is the response and why
    – have you felt pressured to get a CI by family members
    – have you seen changes in attitudes or behaviors by folks who have gotten CIs

    – if you have a CI – how did folks react once they learned of it?
    – how has the CI affected you?
    – what do you wish us to know about u and your choices?

    thanks again to all of u – i read each reply and it has given me good food for thought

    i really appreciate ur being here

    much peace

    patti

  10. Miss Kat's Mom
    Sep 01, 2010 @ 02:24:40

    Shortcomings- we have to take it off a lot more than we did the hearing aids (rollercosters, bounce house, etc) the headpiece falls off, causing silence, and that wasn’t an issue with hearing aids

    I felt like we were fully informed ahead of time. The surgery and recovery went better than we could have hoped, and her success was unimaginable.

    I feel like parents have the responsibilty to what they believe is right for THEIR child. It is not their fault that other people don’t get benefit.

    Also, I say “function in the hearing world” specifically about MY child. She was starting to be left out by heaaring kids, even her cousins, because she couldn’t understand them. It was starting to affect her happines..

  11. Dianrez
    Sep 01, 2010 @ 03:00:09

    It’s true that parents speak for their children, as they must because the child is not old enough to speak for themselves. However, I’d like to hear from adult CI wearers who were implanted as small children now.

    Parents are by nature subjective and their perceptions colored by their own values. For example, my mother, God rest her soul, would brag that my good English was due to her intensive daily drilling in lipreading words when I was small. However, I beg to differ…it wasn’t the lipreading, it was the early reading that formed the basis of my English skills. Little Golden Books, Superman and Archie and Little Lulu comic books. Backs of cereal boxes and odd written notes here and there.

    So, when parents claim that their deafened infant misses hearing and that being left out of communication with cousins was starting to affect the happiness of their small child, I have to wonder. At that age children aren’t conversationalists, but engage in mutual play. Were the parents projecting their feelings onto the child? Possibly, and possibly the child will pick this up later and it becomes a fact. It’s hard to separate subjective information from objective when one is a parent.

    But this isn’t meant to dismiss the impact of the CI in reality. Supposedly it does, just as glasses enhance perception of the world. Here one must weigh the amount of the impact and the reality that it isn’t as enormous as the person used to hearing might think. Consider the generations of profoundly Deaf builders, scientists, teachers, professionals, production workers and parents, and at least concede that hearing has had little to do with their achievements.

  12. Miss Kat's Mom
    Sep 01, 2010 @ 04:05:08

    Actually, my child was 5 1/2. Children that age talk A LOT. I’m not talking about a toddler, my child was in Kindergarten. Children at that age play games and pretend to be families, and make-believe fairies and mermaids and ALL of that takes language and communication.

    Please do not make assumptions about what a parent knows about their child.

  13. Karen Mayes
    Sep 01, 2010 @ 09:54:06

    Good AM… nice dialogue.

    I try not to speak up for my son and he does answer questions posed by adults. He mentioned to me that he did not appreciate the way they asked, especially in negative tone. Like, he has headaches? Seizures? Etc. No, he does not have all of these. He did experience tinnitus right after the surgery and it disappeared after the activation and it drove him crazy for almost a month.

    Patti, I have an idea… will send you an email.

  14. handeyes
    Sep 01, 2010 @ 11:19:53

    Miss Kat’s Mom and ALL (see middle part for general questions / comments)
    a couple of points
    – if u r gonna ask dianrez not to make assupmtions u gotta be committed to not making some of ur own

    – when u put out % can u follow it with a (from….) so we know what study u r referring to

    – do u know what the rate of folks junking their CIs are. my understanding is its pretty significant after adolescence and up – after the novelty of it wears off and folks get tired of the labor of “passing” i do know that some folks totally cant live without their CIs but i also know there is a significant percent that have chucked it but still have the device in their heads because to undergo surgery to get it removed is risk-ridden (as is any surgery)

    – some of what u said about everything being hunky dory re: CI is not what u share in your blogsite so I do get confused
    whole truth and nothing but the truth please – otherwise its all propaganda and anti / pro rhetoric and we are trying to get beyond that here

    – re: “function” lets not go dys”functional” and instead challenge ourselves to use the thesaurus shall we – its a loaded term as it borders the “low-functioning” “feeble minded” “unintelligent” “dumb” labels that Deaf folks who do not speak have been saddled with

    – re: “It is not their fault that other people don’t get benefit.” – nobody said its ur fault. i was asking what can be parents role in showing their concern and love for the “ones that went before” by all accounts the CIs have had to undergo major modification / revision / rebooting / redesiging / reconfiguring and all of those “adjustments” were made as a result of having used them on children and adults

    ya know like how they didnt realize that a Deaf child from meningitis might actual become a victim of meningitis again later post surgery due to the invitation of infection and die from it. There have been deaths as a result of cochlear implants

    there has been electrical shocks due to faulty seal in some of the Advanced Bionics CIs – one young boy under went 4 surgeries – he kept getting a faulty CI

    imagine the pain of his parents and his own

    some folks have had facial paralysis, some have had continual headaches

    the device has been tweaked over time as a direct result of all the intensive data collection and required follow up and im just wondering do the parents feel an obligation to show gratitude and compassion for the folks who underwent all of this so that the CIs could be improved to their current state?

    also as parents do u feel u have an obligation to get all the facts re: the long term affects of CIs – we still dont know much about the breaking down of the internal device over time

    we still dont know if there are any risks about an artifical stimulus-response device and processes hardwired to the brain

    they are implanting babies as young as 5 mo now – we dont know what the long term effects will be

    do parents and adult CI users feel comfortable signing the petition to get facts (see blog
    entry)

    also can folks help me understand – the CIs on good days – when all the stars are aligned pretty much just bring a Deaf person into the hard of hearing range right and as one expert i saw prsent say “that puts them into the limbo land and the forgetten people category as hard of hearing folks are often the most over looked and under-understood in terms of services and support”

    peace

    patti

  15. handeyes
    Sep 01, 2010 @ 12:55:50

    Don – I know been there done that – we all have. But hope is a moral obligation says plawright, Tony Kustner and below from Colonel West guides me steps:

    “We need a moral prophetic minority of all colors who muster the courage to question the powers that be, the courage to be impatient with evil and patient with people, and the courage to fight for social justice. In many instances we will be stepping out on nothing, hoping to land on something. That’s the history of Black folks in the past and present, and of those of us who value history and struggle. Our courage rests on a deep democratic vision of a better world that lures us and a blood-drenched hope that sustains us.
    This hope is not the same as optimism. Optimism adopts the role of the spectator who surveys the evidence in order to infer that things are going to get better. Yet we know that the evidence does not look good. The dominant tendencies of our day are unregulated global capitalism, racial balkanization, social breakdown, and individual depression. Hope enacts the stance of the participant who actively struggles against the evidence in order to change the deadly tides of wealth inequality, group xenophobia, and personal despair. Only a new wave of vision, courage, and hope can keep us sane-and preserve the decency and dignity requisite to revitalize our organizational energy for the work to be done. To live is to wrestle with despair yet never to allow despair to have the last word.”
    From http://www.commondreams.org/views05/0111-35.htm

    “We must be the change we want to see in the world.” Mahatma Gandhi

    peace
    patti

  16. handeyes
    Sep 01, 2010 @ 12:57:01

    Awkelstone

    i know things r really hectic now but if u r willing to wade these waters with us – ur perspective and experiences will be VERY important so welcome and thank you

    peace

    patti

  17. handeyes
    Sep 01, 2010 @ 12:58:13

    Matt

    Yep im of the same mind – we gotta keep trying but hopefully not keep trying the same path – where instead of assuming the worse in each other, we can all figure out how to examine the unexamined and tackle some thorny truths together

    peace

    patti

  18. handeyes
    Sep 01, 2010 @ 13:02:48

    Miss Kat’s Mom, Karen and LI –

    your presence here is really important because you have chosen implants fo your children and hopefully you will guide us in knowing how we can show love for you, your family, and most especially your child while still being able to question and seek out facts re: the full picture of CIs

    I read carefully what each of you have written and it is very important to me because it shows the complexity of all of us and the diversity of each of us.

    I do feel you are exercising trust when you come here so if at any point im too blunt too harsh or too coddling or too…. much – holler.

    wondering if u know of any parents who have chosen implants for their children who were born Deaf? wondering if u know of any dads who would be willing to stop by and share their thoughts and insights.

    Thank you again for being here and sharing

    peace

    patti

  19. handeyes
    Sep 01, 2010 @ 13:10:49

    Dianrez –

    Thank you for your comments – they always offer much insight and information

    this point seems very important:
    “The principle being: how far is society willing to accommodate those who are different and have much to contribute just as they are? Is society going to regard them as “less” when they don’t feel that way? Is society going to impose requirements that they meet the standard before they can participate?”

    re: your emphasis on the role of READING – yes this seems to be a general truism from all of the research i have read about Hearing kids and bilingualism too

    success in terms of being a literate – being with a strong skill set to compete & live comfortably in todays world is often tied to:
    1. how much positive and loving parental involvement u had in the early years
    2. a love of reading

    of course there are exceptions to the rules but – where there is a reader there is usually a thinker

    peace
    patti

  20. K.L.
    Sep 01, 2010 @ 16:23:22

    I apologise if you were offended by the word “functioning”. You are right. Deaf people can “function” in the hearing world, and they do, all the time. But the point I was trying to make is that she has a much easier time in the hearing world with her implants, because she doesn’t need pen and paper, an interpreter, lip reading, or repetition to converse. She truly just simply talks and listens. And her hearing is within 5% of “normal” hearing in noise. In quiet she is at 100% of “normal” (as defined by the audiologist testing).

    Yes there are downsides. Processors go off when she is swimming. Distance hearing is not as good. They fall off if she is rough housing. Batteries go dead.

    But she has had the same internal component since she was one year old, and it is functioning just fine. The first kids who were implanted prior to age three are just barely getting to adulthood now. Most adults who were implanted as kids, at this point, did not get the implant as toddlers. They were older. It was not clear then, but it is now, that the success of the implant is very much tied to age of implantation. A big reason why many of these early implantees have abandon their implants, is because they should never have gotten them in the first place. They were too old for the implant to work well. I don’t have statistics available, but if the implant works well for the person, they are much less likely to abandon using it. So I’m fairly certain that the kids getting the implant prior to age two or three, will be much less likely to abandon it than the kids who got it after age 6 or so. This is for kids who were profoundly deaf from birth or infanthood. Those who lost their hearing later, generally do well with the implant because they already understood sound.

    Bottom line, there are many variables involved in the success of the implant, and each person has to be looked at individually. Yes, the implants work better now, and this is because of all that has been learned by those who walked the path at the beginning. As a parent, I am eternally grateful for those who went before me, so that this option was available for my daughter. But my priority is to my child, not the Deaf Community in general. I have to make my decisions based on HER needs, and her needs only. I want her to be comfortable in the Deaf Community, but if what is best for her conflicts with what the Deaf Community believes or feels is best for the community as a whole, there is no question. We will do what we feel is best for her. We are her parents, not the parents of the Deaf Community. We will, and have listened to their advice, but the final decision is ours. Only ours. Our child is not your sweet deaf baby. Sorry. She is our child, she is not always sweet, but she is always loved, protected, and cherished by us for exactly who she is. Not a deaf child, but our child. Whole and perfect. And we decided that the implants would make life easier for her. And it has. We would make the exact same decision again in a heartbeat.

  21. handeyes
    Sep 01, 2010 @ 17:53:03

    boo i typed a reply to the above without paying careful attention to the author and thought it was miss kat’s mom
    so i deleted it and will post to KL

    sorry for any confusion if u saw and then didnt see

    peace

    p

  22. handeyes
    Sep 01, 2010 @ 18:23:50

    KL

    thank u for the apology

    thank u for giving ur daughter ASL and for allowing her the right to decide when to wear the CI processor and when not to

    re: your “Bottom line,…” paragraph

    This i know. I know your child is Y O U R child. We know this. I know the final decision is yours.
    I went back and re-read my comments as i’m trying to figure out what i wrote that triggered u to feel … defensive or as if I or We were claiming ownership of your child.

    Can you help me understand? sometimes i need folks to hold up a mirror to my words so i can see how they see things.

    I assume but that is always dangerous – that it is cuz i had several (a battery perhaps) of questions re: the role of the parents re: the big pix and big questions about CIs safety and impact and u seem to be saying – ur eyes r only on your child and not anything else. Some of my questions are in regards to possible long term impacts of early implanting that might affect earlie implantees – unforeseen things down the road. i hope and pray not. it just seems logical, just, right and good that ALL of us would be advocating to get the full answers. in no way shape or form am i trying to communicate that u dont have the right to make the decisions u have

    in fact as i have said it before – i will say it again – i am very grateful that u have given your child ASL

    I assume u make sure she has contact with the Deaf community

    She is your daughter indeed – no questions.
    She is part of our community indeed – no questions.

    i do not ACCEPT anyone saying folks with CIs (and their parents) are not part of our community

    if u have a chance – i would like ur thoughts on the petition. if u think it is fair and just or what u would want to see changed in it
    http://www.petitiononline.com/AFA62509/petition.html

    I do want to let u also know that I appreciate ur noting that it is a Deaf community issue as it impacts education – it may also impact linguistic and cultural rights if the Deaf child is denied a fully natural and accessible language

    Some programs push for CIs + oral / aural ONLY and that is more than just an educational issue
    There is a GREAT multilingual – multicultural scholar and researcher named Tove Skutnabb-Kangas from Denmark and when I saw her present at gallaudet re: human and linguistic rights of Deaf people – some one in the audience asked her if CIs were a human rights issue a tool for linguistic and cultural genocide.

    Her response was – no, not in and off themselves because they do not make the child fully Hearing. They are still a Deaf child B U T when they are used to justify the denial of a natural and fully accessible language (ie CIs + AVT all the way) then they may be seen as crimes against humanity because it is the birth right of EVERY child on the planet to be able to understand and be understood naturally (without any excessive or artificial means required)

    re: ur comment UP up above “The bottom line is that without the cochlear implant, she would only have sign, not both.”

    Actually i dont know anyone that wants to regulate Deaf children to ASL only. We want them to be bilingual-bicultural – to have a natural and fully accessible language – to not have to “work for their words” and also for them to have English fluency

    Some programs and even doctors say for the CIs to work – u must not allow ur child to sign. That is a pretty problematic demand by the specialists.

    again and always i do thank u for this dialogue

    peace
    patti

  23. K.L.
    Sep 01, 2010 @ 19:00:42

    Hi Patti,
    In regards to the AFA petition, I won’t sign it. I do not trust the AFA group in general. I have seen individuals in that group try to be very negative towards CIs. I also believe that no matter what, the parent has the right to decide on the methodology they use with their child. I agree that the AVT approach does not always work, but I have seen the studies, and they overwhelmingly show that with kids implanted prior to two years of age, the group that has the highest success integrating the implant signals with their brain understanding, are the AVT kids. It is a proven methodology, even if it isn’t the one I chose. Also, while I believe language is an absolutely critical necessity for everyone, ASL isn’t a birthright. If a parent can successfully give their child spoken English with AVT, that is their choice and right.

    As to the questions you ask about the implant’s safety, they are good questions, and for the most part, there are studies out there that answer them. You will have to dig through the studies that are online. It is not easy, but with the right googled word search, most anything is available online. I have done enough of my own research to feel comfortable that the implant is not harmful for my child. I personally chose the Cochlear Corp product because of its proven internal component. However, there is always a chance for the internal component to fail. I feel horrible for families and kids who have to go through multiple surgeries because of failures, but if they are willing to do that, then they must be getting benefit from the implant to be willing to do that.

    I know the risks of meningitis, and I know that these kids are at slightly higher risk. It is very important for them to keep their immunizations current for the meningitis vaccines. However, from what I have read, Deaf kids with certain malformations in their cochleas are at higher risk anyway, just because of the internal structure of their cochlea. So it is hard to say if it is that or the implant or both. Other than the specific problem with the AB positioner, which was taken off the market over 4 or 5 years ago, if people keep up with their immunizations, the risk of meningitis is almost the same as in the general population.

    As to why I got defensive, it is probably in large part due to previous attacks online, and the seemingly general attitude that the Deaf Community feels some sort of ownershop of all D/deaf babies. Sometimes, I think I am going to barf if I see another online comment about “our poor sweet deaf babies”. It just felt that your questions were sort of implying that the implants are not safe, and that we are putting our children in danger, just so that we can conform our kids to hearing standards. I wonder if you have looked into all the online studies that should have already answered many of your concerns. I also know that other questions you ask don’t have the simple answer we would all like. For instance, what determines whether or not an implant is a success or failure. It is totally subjective. If the implant performs as good as or better than the person expected, it is a success. If it performs worse, it is a failure. However, the implant could be actually giving the same level of hearing to two different people, and one could be happy and the other disappointed.

    Here is another issue. The implant works best for those profoundly deaf kids who are implanted earliest. But many Deaf advocate that it should be the child’s choice. How can it be if by the time they are old enough to choose, their brain is too developed for the implant to work well for them. The reality is that the parent does indeed choose, even if they don’t want to. They either choose to implant when it can actually work well, or they choose not to, and the child is raised ASL only. If the child chooses later to be implanted, it probably won’t go very well.

    Finally, I will explain a little more about our specific circumstance. Our daughter lost her hearing at 7 months, which means her brain was already well on its way to learning verbal language. It was her facial expressions when she saw us talking to her, and not being able to hear us that clued me in to the fact that she was no longer hearing. I had her tested and that was confirmed. It was not parental projecting. She bonded with her implant the day it was activated, and she wanted it on at all times. This was after we had been signing to her, and she was signing back. She still wanted sound. Her hearing after the meningitis was totally gone, and in that case, teaching her verbal language without the implant would just have been cruel in my opinion. Maybe we were lucky, but we have not yet had any problems with the internal components. She is now bilateral, and the second was her choice.

    It will indeed be interesting to see how the kids who were implanted prior to age three see themselves as they become adults. But we are still 5 to 10 years away from that. It will take that amount of time for enough kids to grow up to get a good sampling. As I said, my daughter was one of the first 12 month olds to get the implant, and she is only 12 now. So most of the really early implanted kids are still just that, kids.

  24. K.L.
    Sep 01, 2010 @ 20:00:06

    I don’t have a date on this study, but it looks at all previous AV studies, to determine their quality level and overall study strenght. At the end, it gives a conclusion, and at the bottom it lists all the previous studies it looked at. For an overall look at AV studies, this would be a pretty helpful piece of information.
    http://www.auditoryverbaltraining.com/AV%20Research%20Outcomes%20Final%20Preprint.pdf

  25. handeyes
    Sep 01, 2010 @ 21:50:37

    Hi KL
    Again thank u for the conversation here

    re: AFA – I’m sorry you have that opinion but i respect it. I do hope that if you and other parents see any value in the call for an impartial and independent investigation into the safety and effectiveness of CIs you will pursue your own petition or enter into dialogue with AFA. I am a member of AFA and have been involved with the development of the petition.

    Based on what u wrote – i assume u dont have any actual problems with the petition – just with its host. That is reassuring because ultimately i want for the petition to be just, right, and fair.

    I don’t know if i am implying that CIs cause problems – i am just aware that there have been problems and somethings are problematic.

    we dont use any weed killers on our lawn, we are part of an organic farm cooperative, i have gotten my kids the mandatory immunizations which i only recently learned i could have asserted for bypassing them but didnt know it was an option

    in general – im pretty cautious about lots of things – immunizations, gardasil, breast implants, cigarettes, asbestos, BPA etc. Things that were inspected and tested and declared to be good and safe only later to have problems occur.

    often when some of these were declared ok by the FDA but later proven to be harmful or bad, we usually find corporate deviance and greed deep sixed alot of important known-to-them dangers

    Im pretty much a – if it ain’t broke dont fix it kinda gal – and i recognize with the issue of CIs some folks are always gonna be saying “it is broken folks – the kid cant hear” and others r gonna be saying “its just a difference and its fine” and that is a major chasm to hop over. i am not nor have i ever advocated for a moratorium on CIs because i understand the value of choice. However, i am deeply disturbed by how difficult it is for us to get information and facts about CIs – the number of past deaths, complications, lawsuits, settlements out of court etc. There is also a HUGE amount of $ in this area. So i have concerns and i want answers for everyone – for the folks for whom it “is a good thing” and might benefit from this information later down the road or whom should be equally concerned for the well-being of those folks for whom it “is not a good thing.”

    there are lots of thorny ethical issues that we havent even touched on yet – like the judge in Idaho ordering parents that they must make their daughter wear her CIs all her waking hours (except when swimming or wearing a helmet).

    I do join the ICED 2010 New Agreement in calling for a moratorium on oral / aural only ism. Even under the best of conditions its a pretty dang and unjust way to educate and raise a child. Now this does NOT NOT NOT mean that i would accuse parents who did not learn to sign or use sign with their children to be child abusers just as i would NEVER want to see any pro-CIs folks telling parents who did not implant their children they were child abusers. It does mean that the PROHIBITING of signing is not cool, unjust, and wrong. Now i know there will be plenty of cases of “accidental omissions” – de facto Oralism – just by the sheer fact that we dont have enough bi-bi programs out there in close proximity to the Deaf children that are spread across this country but to me that is VERY different than when programs actively FORBID it.

    I do understand why u have made the choices u have and im very glad that your daughter is happy and it is clear you are a good mom.

    wondering if we can agree on these items?

    1. no one is advocating that you raise your child or any child be raised ASL only – that would be unjust and a disservice to the child and her/his family

    2. raising a child English only when s/he can not fully hear and must rely on artificial devices and systems in order to access that language is doable but not desirable. CIs break, batteries die, kids have colds and their heads r fuzzy and its hard for them to process sound then, having two languages is better than 1 that u have to work for (even if the working gets easier and easier)

    3. the argument of implanting at an increasingly earlier age (against FDA advise) in order to augment the hardwiring in the brain for sound also applies to the introducing of ASL at birth or onset of being Deaf – so i might be inclined to accept the urgency (with my still existing concerns for the need of those longitudinal studies etc) if i saw that the folks who said – well i gotta give them this asap where also saying well i also want to make sure they have a natural and fully accessible language too (even Hearing babies are being taught baby signs today and reaping HUGE benefits from it)

    4. re: the link – thank u very much – ill check it out.

    Some of the things that have struck me from researchers in the area of CIs are:
    a. that there are soooooooo many variables it is hard to ascertain what is causing what – meaning parents are often changing types of educational environments if they dont see the results they want, moving their kids from program to program, inconsistently implementing things, kids vary so much, when, how, what type of being Deaf varies, language exposure varies etc – that any type of consistent reliable results is hard to determine

    b. most of the studies re: CIs are conducted or linked to CIs manufacturers and/or specialists – not exactly unbiased / impartial. Full disclosure might not always be present also

    c. Dr. David Pisoni mentioned the need for the FDA to look into the effectiveness of cochlear implants at the AG Bell Conference in St Louis last year – he explained that many of the studies signify whether or not the CI turns on and operates / runs and does not actually measure its effectiveness and when that is studies / documented the answer is NO it does not effectively work for everyone

    I’m of the mind that we should care about everybody and not just cross our fingers and be optimistic that nothing bad will happen to anyone. You all deserve all the answers far more than i do

    I just wanna figure out how it is i can advocate for those answers without making u feel badly about ur choices and without making Deaf folks who take much stronger stands in opposition to CIs from feeling like i am ushering in the demise of the culture and the language. That i will never do. So based on the facts that i can gather thus far:
    – some times CIs are problematic in their manufacturing, in their implanting, in their costs, in their marketing (why are they covered and not hearing aids – why did Cochlear Americas get fined by the Dept of Justice for engaging in kickbacks and insurance fraud, etc), dissemination, treatment and therapies associated with CIs
    and some times folks feel the pros outweigh the cons or the benefits outweigh the risks

    – sometimes when CIs are coupled with active exclusionary practices that forbid the child the right to ASL – the potential for cultural and linguistic oppression takes place

    again and again i really appreciate ur sharing here

    i apologize in advance for any typos – in a rush me.

    peace

    patti

  26. K.L.
    Sep 01, 2010 @ 23:09:12

    Hi Patti,
    Yes, there is a lot of money on the table, and I believe that absolute power corrupts absolutely. Everyone and every company needs oversight and checks and balances. But that issue is separate from the implant itself.

    I’m trying to access my old memory here, but I believe there are more than a quarter of a million people worldwide who have implants at this time. If they were inherently damaging, the information would have come out by now. I truly believe they are safe. I also believe that it is the responsibility of the parent or person being implanted to do their research. I would never have a family doctor do this type of surgery. It should only be performed or overseen by trained physicians with proven records of safety. This is a good way to lower what risks are there.

    The problem with trying to outlaw any type of methodology, is it is almost impossible to enforce. How do you prevent a parent from using an oral only approach without supervising them full time? And if the methodology has a proven track record of success, there would be no legal grounds for the ban in the first place. I can tell you that I agree with you. I feel that it is much better for a D/deaf kid to have a language that is always accessible to them no matter what. But if I have to take sides, I’ll fight for the parent’s right to choose the methodology they think is the best fit, even if it is oral only, even if I don’t agree with that methodology. I think that is where the big chasm is at. It is kind of like abortion or gay marriage. I will fight for their rights even if I don’t like abortions, even though I am straight. I see trying to require all parents to teach a manual language even if they don’t want to, as a slippery slope. It won’t work, it isn’t enforceable, and it would cause more conflict and divide than we have now.

    There are a lot of bad parents out there, who abuse the kids they are most sworn to protect. Until there is a way to prescreen parents, there will be horror stories of kids who did not get the childhood they deserve. I wish I could wave a wand and make all parents be good parents. The thing is, most of the AVT parents I have met are very dedicated people. You almost have to be if you follow that approach, because it is very time intensive. I don’t worry about kids who have involved parents. They will find a way to make sure their child is successful. I would rather see a child in an AVT program with an involved parent, than a child supposedly learning ASL with a self centered uninvolved parent who won’t even learn it or teach it at home. The kids who succeed are the ones who have involved parents. That is universal. I think more effort should be made to find the kids without involved parents, because those are the ones who are falling through the cracks.

  27. Miss Kat's Mom
    Sep 01, 2010 @ 23:38:31

    1.Yes, our first week with her second implant was rough, but it is over and she likes and wears both implants with no problem.

    2. I also do NOT trust AFA. They have asked for a moratorium on implanting children and I can not support a group that would do that.

    3. I can not support taking away choice from families. I think AV and oral education work, when a child can hear, and our deaf children can hear.

    4. Rates of non-use http://www.ncbi.nlm.nih.gov/pubmed/20550036 ” Non-use and failure rates (as reported by the authors from the medical centers and not solely by the cochlear implant manufacturers) are low, ranging from 1% to 2.7% per year”

    5. Oralism does not forbid ASL. That is like saying that because my school speaks English they are forbidding Spanish. No, go ahead and learn Spanish, but here we use English. My daughter has been a student at 3 oral school and they all saw her sign and no one EVER punished or was rude or nasty about it at all.

    6. Also, the more you talk about implants, the more I get the impression you are not neutral at all. It seem to me that you clearly have a very negative opinion about them.

  28. handeyes
    Sep 02, 2010 @ 01:05:31

    KL

    thank you very much for all u wrote

    yes involved parents are often critical for a child’s success

    we could talk about over-involved / over-protective parents at some point but probably not the best time right now. it is just a common experience for Deaf kids even into adulthood to feel their parents tend to be overprotective of them. im hoping that is less true of the new generation just because parenting and notions of autonomy and independence has changed alot

    Parental reading to children, with children, around their children often seems critical re: literacy skills of their kids

    re: banning any one method – this is a good question u put forth

    the abortion issue and gay and lesbian marriage also often come to my mind because they are very controversial and polarizing issues and because where u stand is often based on your value system

    i believe perhaps this is why i have not engaged in any activism calling for a moratorium on CIs (nor has the AFA at this time – not sure where Miss Kat’s mom got her misinformation from)

    as i already stated – i understand and value ur right to choose re: CIs

    i do want to ensure their safey (physically, socially, emotionally, linguistically, and culturally) hence the petition

    re: methodology – why do i take a firmer stand on that one – meaning i do think that an oral / aural only method should not be sanctioned or financed or endorsed by a state govt or a national govt? Because even if some children are able to “do it” it is not natural, normal, easy, or equal – it is like a weird kinda false “separate but equal” doctrine gone bad. also because it denies the right to a fully natural and accessible language and that is just plan ole wrong. that is not a moral judgment

    there are some truism that societies generally agree on and the right to a fully natural and accessible language generally seems to be one of them

    JUST as true would be that to raise a child ASL only – forbidding them the use of English in their school program or hme would be equally wrong and unjust

    so this is a place where i often dont make myself very clear and it might be cuz im not very clear myself but what im thinking is:
    no program should prohbit the use of a natural and fully accessible language for Deaf children and English

    Miss Kat’s mom – from other reports there are programs out there that do not allow signing – AVT guideline #3 even had this protocol

    and yes it would be legal for a state or a country to say denying a child a fully accessible and natural language is not cool (it has been noted in the UN convention on person’s with disability and the ICED 2010 New Era agreement)

    probably private programs could still do as they please (Oral / Aural only) but wouldnt be sanctioned, endorsed, or financed by a local state or national government – im not sure if they still could but i can see they have some wiggly room

    KL – i really value what u are saying, why u r saying it and how u r saying it

    i do believe in parental choice – there are just some areas where societies say – nah u cant do that to the kiddies

    re: the great success of oral / aural only programs. i know many many folks who have went through oral / aural only programs but i only know a few who have remained purely oral. most of them take up ASL sooner or later and many with deep regret that they were denied it at a younger age or that their parents still prohibit them from signing at home. I even saw a 50 year old author confide to a group that she was learning sign language but would not tell her mother.

    again and always thanks for sharing

    peace

    patti

  29. handeyes
    Sep 02, 2010 @ 01:35:11

    Miss Kat’s Mom

    could u give me a different name to call you by – even if it is just a letter. Just awkward to always address you via ur daughter

    1. Im glad things are going better. thank you for the update

    2. AFA officially as a group has not asked for a moratorium on cochlear implants. this is a truth. so if u want to distrust us – u might want to do it for the right reasons. There are folks involved with AFA who probably in their heart would like to see a moratorium but when the choice came – it was them who said “no what we need are answers.”

    3. AVT works for a child who can hear and our Deaf child can hear – u wrote. OK so does this mean u no longer sign with Kat?
    does this mean that her Hearing is perfect and she is not working for her words whatsoever?

    I aint saying u are not seeing benefits or things that u feel r good and promising – im just saying from reading ur blogs – it has involved A LOT of work for Kat to hear. I’m not begrudging u the right to want her to hear or the right to want her to speak – im just saying do u think the AVT programs that deny signing, lipreading etc (some are out there some practice this u know they do) are cool? ok? acceptable?
    THAT me point – going a bit beyond just ur personal experiences and thinking more globally here for the other kids etc

    3. part 2 – pls note i NEVER said take away the right to CIs or speech therapy
    I did say that programs and services that BANNED signing should not be supported by local, state or federal govts

    4. thank u for the link – i will check it out. i promise u

    5. Oralism does not forbid signing – well we may be in a grey area of definitions but Oralism traditionally means the method of teaching the Deaf to speak that prohibited the use of Sign Language. I recall reading a blog entry of yours where kat came home crying from her new Oral program because the teacher said “we do not sign here” etc and u called the teacher and she said that is true etc etc

    i do believe ur other entries where u have advocated to get Kat ASL in her oral program by having pull out with an ASL specialist etc

    I aint really that worried about u and kat. im really worried about the folks that say Oral / Aural only – and i have met them. and they are out there.

    do u know that the AG Bell Association wrote a letting to Pepsi criticizing them for showing Deaf people using ASL in a wee short short short commercial that only aired for one day. One of the actors has a CI and speaks and listens but “no no, pepsi should not be showing no ASL.” hmmmmm
    odd eh?

    6. i was pretty dang clear in my opening post (see above) that i am not gonna pretend to be neutral. i am not. i have concerns about CIs especially in conjunction with Oral / Aural only practices. I dont know if i would call my opinion of CIs to be a negative one. I definitely do not have a negative opinion of people who have CIs – i understand why they have them and i understand why the use them.

    My concerns are several. Chief amongst them may be my silence. I have been silent on this topic for far to long for fear of being misunderstood or for hurting anyone. At the same time as i already stated – i think we all have a duty to examine the unexamined here. There are many folks who have not had the experiences you have had and their stories and realities are important also. One for all and all for one.

    Again i hope we can remain in dialogue coming from love.

    Thank you too for coming back. I am assuming (which is always dangerous) that we havent had any other comments cuz folks are just watching and see – seeing how this conversation works before joining in. From the stats – the thread is getting alot of hits.

    I want to make sure folks know u r all welcome to share ur points of view.

    I think these two moms are really exceptional and while they may argue with what u have to share – that ur pov or experiences are not the same as their and their daughters – i do believe that they will listen and perhaps affirm and acknowledge where u r coming from.

    again – i thank u all

    peace

    patti

  30. Miss Kat's Mom
    Sep 02, 2010 @ 02:07:37

    Again, your definition of “banning sign” and mine are different. Yes, my daughter’s program asked her to use her voice because that is why they do there. If she is supposed to be learning a language, she needs to use it. She transitioned from a voice off bi-bi school to an oral school. We worked hard to include ASL in her days and she signed to the teacher some and the teacher even signed to her in class. It was not banned, (and it wasn’t banned at the other schools, just like Spanish isn’t banned at my school) but the other language is the language being taught, the language of communication and the language being emphasised.

    As for how “difficult” it is for her to hear….it isn’t. She hears and is able to discriminate all speech sounds of English. What is taking time is her acquiring a second language. She picks up speech and language from overhearing, from tv, from her friends. It is time consuming, because she started so far behind, but it isn’t difficult.

    In order for a family to use ASL they must ADD something, they must seek it out. Oralism just doesn’t add that thing. It is not that ASL is everywhere, perfectly easy to access and expose your child to, and that oral families cocoon their children from that ever-present ASL. They just choose not to seek it out.

  31. handeyes
    Sep 02, 2010 @ 03:09:31

    MKM –
    i think we have done this dance before over at Shel’s blog

    AVT guideline # 3 said says no signing or lipreading

    u know oral / aural programs focus is on speech and listening – that is what they do that is what they are about. ASL is not offered or available.

    U r the only mom i have heard of that did advocate for having pull out ASL therapy at her Oral / Aural only program. It is not clear if you also got her that at CID this summer.

    bilingual / bicultural programs (ASL / English) – do not just not prohibit they actually offer and promote ASL and English (and speech and audition as clinical services as applicable and desirable)

    do u see a difference?

    now ill tell u about an interesting experience i had with a mom at the DBC Wisconsin rally in front of the AG Bell conference – a Hearing mom of a Deaf daughter who had bilateral implants came out to talk with the folks there. She was great – really i just felt she was wonderful. Her daughter was about 6 i think – doing great. Speaking, listening, language all good but this mom was still curious – what was it that we wanted for her child – so some folks said for her to have a natural and fully accessible language. So she said but she has two ears and a mouth – shouldnt she use them, and someone replied she has two eyes and two hands shouldnt she be able to use them too.

    so yes u r right extra efforts have to be made to get ASL materials into the hands and eyes of your children but you make HUGE extra efforts to get them sound and speech. soo…….?????

    isnt it worth it?

    peace

    patti

  32. handeyes
    Sep 02, 2010 @ 03:15:02

    2 more – sorry

    MKM – re: AFA – wondering your thoughts now? Also, i want to be honest with you that im uncomfortable with how you state things in comments in other threads sometimes that dont really sync up with what u have written in your blog entries. Its unsettling and while you may distrust AFA for incorrect reasons – i do NOT want to do so with u.

    KL – you wrote: “Yes, there is a lot of money on the table, and I believe that absolute power corrupts absolutely. Everyone and every company needs oversight and checks and balances. But that issue is separate from the implant itself.”

    I appreciate very much what u wrote – its important. Re: the last part thought “is separate from the implant itself” – i think i understand what u mean but it is also related and that is one of the things we are seeking answers to also (see the Cochlear Americas Dept of Justice ruling –
    http://www.justice.gov/opa/pr/2010/June/10-civ-673.html)

    Thank u both again

    peace
    patti

  33. Miss Kat's Mom
    Sep 02, 2010 @ 03:25:04

    Actually, the bi-bi program that my daughter attended expressly forbid spoken language in the school. You could work on speech in pull out ONLY and listening/aural rehab/AV was not allowed even in pull out. English was only encouraged in written form.

  34. Miss Kat's Mom
    Sep 02, 2010 @ 03:31:40

    Yes, signing IN AV therapy would be counter-productive. The whole point of AVT is to listen. As for lipreading, again, how would you know what the child can HEAR if they are lipreading. Until you isolate just the hearing, you can’t check for comprehension through listening.

    I advocate for ASL and spoken language for all children BUT I respect a family’s decision. I have known MANY very successful oral only children. Their families are responsible and pro-active. They make sure that their children have appropriate language and don’t fall behind, they make sure their children have the tools and skills they need to be successful in life, they just happen to do it in a way that is different from the way I do.

  35. Dianrez
    Sep 02, 2010 @ 05:46:25

    Following this discussion, and looking at the two links provided by the parents here, I am left still feeling uncomfortable about the AVT part of the CI schemata.

    With these two parents’ overwhelmingly positive defenses of the CI, I felt a little better about my decision to try to hold to a neutral position.

    However, the two references mentioned have serious problems: the first one is a private practitioner’s website specializing in AVT who has picked and chosen and generalized from what sounds like industry publications. Her information is biased toward the success stories and answers no questions about long-term effects of AVT.

    The second one is more fair, but admits upfront a lack of evidence relating to long-term efficiency of CI and AVT therapy. Its citing a 1 to 2 percent rate of abandonment of the CI is not clear: eg. it states every year. Is that based upon the total population of CI implantees, which is growing every year; or upon the specific year by year number of new implantees? Over what term is the figure based upon? Is it cumulative? Are adults included in the survey?

    As a teacher and counselor and community member I am familiar with the majority of Deaf adults who have gone through early oral/aural programs and come out with less than equivalent education to their hearing peers. (Note how deliberately understated that is.)

    Now considering the claims of AVT proponents, I have not seen their students in adulthood or even in high school. However, fellow Deaf teachers have told me that their young students arrive with gaps in their education and language skills which sounds distressingly familiar to me.

    Patti is focusing upon a moratorium on AVT therapies (i.e. exclusionary methods that do not utilize ASL in any extent) and not suggesting limiting the CI itself. That makes a great deal of sense.

    I am most comfortable with the comprehensive approach that both parents here are using: combining AVT with ASL and covering all bases that way. It isn’t a cultural consideration at this young age; it is making sure that language input is maximized by use of two parallel languages: English and ASL, with the auditory component used as one of the ways to support English.

    Just a teeny aside here: they may not be OUR d/Deaf children at this time; certainly they are YOURS during the school years. However, they inevitably become OURS for the remainder of their lives: when they present problems for educational, vocational, rehabilitation and social professionals to solve at the adult stage when there are gaps to be diagnosed (and less than effectively filled.)

    Parents who choose to deprive their kids of early ASL may see them having to take crash courses in it at the beginning of college in order to benefit from college education and interpreter support. (Imagine having to take a crash course in French in order to attend the Sorbonne.) This is a disadvantage one wouldn’t wish on new freshmen already attempting to meet the challenges of college. Gallaudet has a preparatory and freshman dropout rate approaching 50 percent.

    So, for this discussion, we need to look at it from the other end of childhood and admit that there are a lot of things we just don’t know and are trusting to hope. Based on previous experience with hearing aids, oralism, listening and speaking therapies, early CI trials, educational approach limitations and ever-optimistic claims of the hearing enhancement industry, I tend to be very, very skeptical. Telling a worker in the trenches that the CI is different and a whole other bag of possibilities is not plausible without the evidence of grown-up implantees collected by impartial researchers.

  36. handeyes
    Sep 02, 2010 @ 13:28:30

    mkm – re: the bi-bi u had kat it – that was Massieu correct? That is the only program that i know of that takes such a stance so not really representative

    what seems to be happening across the land is:
    – eclectic approach – kinda hodge podged anything goes – called Total Communication or Simultaneous Communication by many. it is because the kids come in all sizes and shapes of abilities and early language access, age of onset etc etc and its cuz the teachers were largely trained on this approach

    the COED report said not so good – just leaves too much up to too may variables and it is still English dominated without a fully natural and accessible language as part of the programmming

    – oral / aural option schools on the increase – CI all the way and no ASL unless u have a fearless mom like MKM who advocates for a pull out and bring in ASL expert
    (i get the impression that u have STOPPED this so pls correct me if im wrong)

    – bibi programs that allow the option of pull out for clinical services (audio and verbal / speech) there are only a few

    – bibi program that limits pull out clinical services to prohibit speech training -only one program that i know of massieu

    – the majority of the kids – in the mainstream – sink or swim. they tend to get alot of CI / AVT stuff at the parents discretion and they might be in self-contained classrooms or mainstream classrooms – support may be interpreter and/or cprint/cart

    the kids who are actually getting a truly bilingual-bicultural education are VERY FEW

    the kids who are getting CI/AVTs are very MANY and the results are not overwhelming consistent, reliable and great – hence the good dr. noted above said at an AG BELL conference we NEED the FDA to investigate this

    MKM and KL – can you share a bit more about your daughters use of sign language. where did they learn it, at what age, do they use it daily, how much contact do they have with native signers etc etc

    again i do commend u for not actively denying ur daughters sign language and i do appreciate ur continued discourse

    again where are the dads and parents who children who were born Deaf in this discussion (those who have chosen CIs and those who have not etc)

    peace

    patti

  37. handeyes
    Sep 02, 2010 @ 13:36:19

    Diannez

    thank you for your comment and your thorough examination of the links. i havent had a chance to survey them carefully yet and really appreciate ur insight.

    re: me calling for a moratorium on AVT education and programming – i dont think i stated that. what i do feel comfortable saying based on:
    babbibge report
    COED report
    UN Convention on the Rights of People with Disabilities
    ICED 2010 New Era
    and Tove Skutnabb-Kangas’ work as well as many other scholars

    Denying a child the right to a fully natural and accessible language and the language of the dominant culture should not be sanctioned, supported, and/or financed by any governmental body

    it seems to me that this should be a common ground that we could all stand behind because it is not radical, unjust, or biased

    it is only extreme as in ML King’s extremist for love principle –
    https://handeyes.wordpress.com/2010/07/21/what-kind-of-extremists-we-will-be-qqq/

    peace

    patti

  38. K.L.
    Sep 02, 2010 @ 16:52:38

    In the Seattle area, there is a TC school that has a very high educational rating. They use SEE, and voice, and require both at all times. Because we chose the implant, and because there simply was no AS L/ verbal program available, we chose TC and Signing Exact English. I understand the dislike of ASL folks to SEE, but it was the only sign language that we could use simultaneously with verbal English. And it worked exceedingly well for us. Our daughter was both linguistically and academically ahead of her peers when she mainstreamed in second grade. We kept an interpreter with her for two years just in case, but the interpreter ended up being more of a distraction for her. She kept wanting to socialize with the interpreter, and her verbal skills with the FM system gave her full access to the teacher. So we discontinued the interpreter in 4th grade, with no drop in her academic abilities. Just for reference, when they tested her in 6th grade, every academic level they tested were above grade level, with her reading skills equal to 12th grade.

    She is learning ASL and interacting with deaf kids who use ASL, but in school she is mainstreamed with no sign language. It is available if she needs it, but thus far, she has not.

    I understand that many Deaf have very negative experience with oral programs, and I fully agree that without full access to sound, those programs would not work well, and many people were not provided with a good education. However, the implant really is different. If you get it later, it may not work any better, but for those kids who get it while they are still young enough for their brains to fully make sense of the signals coming in, they really do have full access to sound, especially if they have bilateral implants. They truly do hear almost as well as those without a hearing loss at all. I have seen it in many kids, including my daughter.

    As to AVT, I have to say that I am playing devil’s advocate a bit here, because I did not follow the AVT methodology. But there is a big difference between AVT and general oral programs. AVT does not include sign language. It goes against its basic philosophy. So to say “use AVT part time and ASL part time” is an oxymoron. If you add ASL, it is simply not AVT any longer. And those who use AVT say that it is a full time process. They are maxxed out time wise, and couldn’t add the ASL learning required. Again, I’m not advocating AVT, just explaining it.

    Diane, I added the link to that AVT file, because I felt it accurately conveyed both the positive and negative aspects. It isn’t totally proven, and it isn’t for all kids. But there is enough proof now to believe that it does have viability. One of the oldest kids I know of who have grown up with AVT is Rachel Chaikof. She is fully oral, and speaks French as well. But because of her attitude and lack of empathy for Deaf Culture, she was banned ffom DeafRead. That was too bad because she had a lot of good information, and a lot she could teach about growing up with implants and AVT. She is one of the first, but I believe she will be fairly typical of kids who got their implants early. The results I see have been very positive for AVT, as long as the child got their implant before age 2. This methodology does not work for all kids, and if a child is not progressing, the parents have to be very proactive in changing to a different program. Ultimately it is the parent’s job to give their children the language they need and deserve. AVT works if done right, and while I did not choose that method (I agree that the kids deserve to have a manual language) I cannot support banning any oral only method.

    Logistically, I believe that if any oral only program was outlawed, that law would be found to be unconstitutional. And it is impossible to enforce anyway. It is a waste of time, money and energy to even try. It would be far better to spend that time, energy and money looking for those families who need more support. If a child is not getting the language they need from home, then this is a great place for the Deaf Community to step in. Spend more time with the child. Teach them ASL. Work with the parents. Be the bridge to language for those who would not otherwise get language.

  39. handeyes
    Sep 02, 2010 @ 18:08:28

    KL –

    i really do value all u have shared here

    re: outlawing oral / aural only – i dont think i said that. i just said i dont think a govt should sanction, endorse, or finance them. there is a difference and i think its significant.

    re: Rachel C. and DeafRead – my understanding of why she got the boot was cuz she violated some rule DR had about – u cant use ur blog site to promote commercial entities – i very much objected to how and why DR gave Rachel the boot.
    https://handeyes.wordpress.com/2008/06/06/deafread-pls-re-consider-your-decision/

    i felt it was unfair even though i did object to some of her postings that were audist in nature. I am not calling her an audist. I just know that some of her postings and comments were very anti-Deaf and anti-ASL. I wanted DeafRead to add Deaf ASL folks to their listing of protected groups under guideline #8 and disabilities as well just so that ANY b/vlogger would need to be more respectful in how they spoke of others

    i know some folks are disturbed by any v/blogging on CIs mapping, surgery etc – they dont want to see it. i believe that the “custom” function that DR has up would address that in large part and i know the few times ihave read those entries re: CIs they are often not all rays of sunshine – there is also disappointment, frustration, surprises, disinformation, false hopes, even at times despair so i have never advocated for a ban on CIs blog entries in DR but rather that ANY b/vlogging that bashed being Deaf and ASL user not be run / listed just as any b/vlog bashing CI users should not be run / listed (and yes i know it would involve judgment calls by their human editors just as whether or not an entry is racist, sexist, anti-s emetic, ageist, etc in nature needs to be reviewed and considered – GREY AREAS indeed. the refusal to even list Deaf ASL folks (noting them under ethnicity) and disability groups int he guidelines is why i have been in boycott of DR for a mighty long time and it was Rachel’s expulsion that got me examining their practices and commitment to equality)

    re: ur daughter using ASL and having friends who use ASL this is great

    For many a moons i have been hearing the cry “the Cochlear Implants are coming the Cochlear Implants are coming” which meant – there will be a sea of non-signing folks covering the land. In actuality what i have seen is a marked increase in the number of people who have CIs (yes) but most of them are signers and those who are not, are quick to learn ASL so……

    this is one of the grey areas:
    – on the one hand advocates of CIs are saying
    — the kids are still Deaf while simultaneously saying my kids is almost fully hearing

    which is it?

    — ASL is fine and they can use it as needed but English, listening and speaking and reading and writing is not an OPTION – its a have to do while simultaneously saying excluding ASL is a parental right but exclude English is immoral and wrong

    – the fear factor
    — we are simultaneously told – ASL is ok – we support ASL. did u know u all are a dying breed – what with early implanting at 3 mo, AVT, and genetic engineering – u all should be wiped off the face of the earth in a nano-generational second

    there are official organizations and governmental representatives who have even said this – THAT THERE IS NO FUTURE DEAF FOLKS

    when folks talk like that we get defensive and busy cuz genocides (cultural and linguistic) are not cool

    not cool

    i like ur vision and recognition that its important to get loving and good ASL Deaf folks in contact with families of Deaf children

    I know many GREAT Deaf ASL folks who have done this. I know many many GREAT parents who have sought this out

    I know that often the “systems that be” keep these groups apart and separated and that is not cool

    I believe this would benefit all parties involved even families who’s kids are reaping the max. benefits of CIs but agree the priority should be for those who are not. We still i believe gotta care for those who are getting the CIs and advocate for getting the full answer. I am still really worried about the long term effects but grateful that it seems for many of the folks with CIs sooner or later learn ASL and thus far from what i am seeing even with the folks who got it VERY VERY VERY young – this learning of ASL and joining the Deaf community is like a coming home experience. hence our desire that it not be so delayed.

    so do do now????

    tell me KL – how can we reach out to and team up with the parents and the kids. and THANK YOU!

    peace
    patti

  40. K.L.
    Sep 02, 2010 @ 19:12:23

    It is a difficult road, to be a community with very different modes of communication. One reason we chose to include sign language, was because we knew that she would probably never feel fully “at home” in the hearing world. We wanted her to know and have respect for the Deaf Community. However, we also felt that she needed as much verbal English in her “toolbox” as we could give her, simply to make day-to-day interactions as easy as we could make them. We got flak from both sides from time to time. That is the part that has to end. Criticizing parents for the choices they make will only lead to estrangement.

    If you want to get oral CI kids and families to join and become part of the Deaf Community, then the Deaf Community will have to become more open and accepting. Yes, it is important to say they need to accept and learn ASL, but you must also be willing to include the oral deaf without requiring ASL first. Have interpreters readily available for them, just like you want an interpreter available for you when you attend hearing events, or appointments. Do not begin conversations by asking if they still like their CI, or by implying that you expect them to only turn to the Deaf Community because they don’t like their implant or their oral lifestyle. Just accept them as they are, and include them without judgement. That may be easier said than done, because there are still many people in the Deaf Community who are so defensive about ASL that the negativity towards implant and oral deaf are hard to hide.

    There is a reason I don’t use my daughter’s name, and I only use my initials. I am waiting until I feel a more accepting Deaf Community before I allow greater contact with my online persona and my private family. Many people know of my online views, but in private, when I interact with the Deaf Community, I don’t tell them who I am online. It is not for myself, but to protect my daughter. Some people know, but they are people I trust, who have similar views to begin with.

    One reason I have joined the online community is to try to help build those bridges, and to try to get more acceptance of implants within the Deaf Community.

    BTW, just a note. If a parent has a deaf child in public school, and they are using AVT, the school has a responsibility to follow the methodology the parent has chosen, so public entities cannot disallow an oral only approach. So saying a govt sanctioned program cannot endorse or fund an oral program just would not work. Schools are govt programs, and the AVT kids are mainstreamed from the beginning. Schools are required to fund the child’s education, using oral methods if that is what the parent has decided.

  41. handeyes
    Sep 02, 2010 @ 19:36:34

    “We got flak from both sides from time to time. That is the part that has to end.”

    amen to that

    re: ur not revealing ur name and ur daughter’s real names – i understand. With MKM – id like a letter or something so that in my mind i aint saying MKM all the time cuz it becomes like a phrase and id like to see her a her so even if it were fictitious it would still be her and not only kat’s mom

    re: avt and public schools. supposing a parent wanted the audio and verbal part of it without the prohibition of signing – would they be within their right to get it – if yes then public schools should support because then it is truly not requiring an exclusionary practice that prohibits a fully natural and accessible language

    re: from what u and karen m. and other folks have said – maybe this is a beginning “dos and donts list” re: CIs

    – don’t look at the child as one big ole CI (or 2) they are much much more than that

    – don’t be quizing them about their CIs

    – dont be throwing projections onto them re: ur own issues or concerns re: CIs

    – do accept them

    – do welcome them

    – do love them

    – do encourage them to sign

    – do make an effort to meet them half way

    – do ….

    ——

    for the parents – what is u ur wish list of dos and donts for the Deaf community to know and do with and towards the parents?

    ill muse about dos and donts for CIs and parents re: the Deaf community or someone else – pls feel free to start a draft here

    again and always many thanks for this conversation

    peace

    patti

  42. K.L.
    Sep 02, 2010 @ 20:21:04

    If a parent wants to add sign language or cued speech to an AVT, it is no longer AVT, it is an oral/TC methodology. Absolutely nothing wrong with that, it simply is no longer AVT. It is something else. If the parent wants a mixed program, the school district should follow whatever methodology the parents have been using with their child.

    I’ll also think on the parents dos and don’ts. The ones you have started are very good.

  43. Dianrez
    Sep 02, 2010 @ 20:57:23

    Perhaps what is needed for easier discussion is a term for the auditory/verbal training plus ASL scenario that we are talking about. I’ve been calling it a “comprehensive approach”, but maybe something snappier would go farther?

    Trimodal method–English, ASL, auditory training? Some who want to emphasize ASL and English as equal languages and anything else a “method” might not like this.

    Bilingual auditory approach?

    Visual and auditory approach? This sounds like the whole smorgasbord all at once–including SEE, sim-com, cued speech, etc. Not too descriptive.

    Bilingual English-ASL with auditory training–BEAAT? Ugh.

  44. Joseph Pietro Riolo
    Sep 02, 2010 @ 22:50:48

    Ms. Patti Durr wondered where Miss Kat’s Mom got the information that Audism Free America (AFA) supported moratorium on cochlear implant. The word “moratorium” is not used often in the deaf blogosphere and it is not hard to identify people who used it. I fear that I may be one of them that gave Miss Kat’s Mom the idea about moratorium.

    If it is true that I am the source when I wrote my comment at http://aslci.blogspot.com/2009/04/audism-free-america-and-cochlear.html on April 14, 2009 at 3:15pm, it becomes my responsibility to explain to Miss Kat’s Mom why I used the word “moratorium”. AFA did not specifically used the word “moratorium” in any of its communication including website, as far as I could find. It is only my conjecture – not an assertion or fact – that AFA seems to support moratorium on the cochlear implant for the babies and very young children (before they are able to decide for themselves). The best circumstantial evidence that I could offer is the rallying cry to stop putting cochlear implant on deaf babies as shown in the video at http://audismfreeamerica.blogspot.com/2009/04/afa-rally-part-1.html starting at time frames 5:04 and 5:40. I have not seen anything from AFA that censures the rallying cry or that distances itself from these people. Also, I have not seen anything from AFA that states explicitly that it does not support any form of ban on cochlear implant for babies, children and all other people.

    That is only my conjecture. If I misled Miss Kat’s Mom in thinking that AFA supports moratorium on cochlear implant for the babies, I offer her my apology.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

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

  45. handeyes
    Sep 02, 2010 @ 23:38:20

    Dianrez

    Perhaps what u r proposing is what was called the combined method. From all my readings there is no clear cut definition of what was meant by the combined method of which Edward Miner Gallaudet was a chief supporter but I believe in Dr. Baynton’s awesome book “Forbidden Signs: American Culture and the Campaign Against Sign Language” i believe Dr. Baynton pieced together that it was a compromise to preserve the use of ASL in American Deaf schools against the onslaught of Oralism (here i mean the exclusive use of Oral / Aural method as advocated by Dr. Bell).

    Ya got me thinking Dianrez about how despite all these compromises and concessions EM Gallaudet made to try to appease Bell’s demand for oral / aural onlyism – Bell did not honor his end of the deal.

    I believe one of the priests at the ICED Milan 1880 congress said that “speech was a jealous mistress” or something to that effect to rationalize, justify, and push forth the oral / aural only doctrine.

    KL –
    couple of questions.
    1. Russell (Not sure if u have encountered him the blogsphere but he is a Deaf man and has a Deaf son with an implant) has stated numerous times that sign language is allowed during his son’s AVT sessions and that it is a bi-bi approach. I have seen this from other folks too so are you saying that the AVT folks who are allowing signing are violating their own doctrine or are u saying that these folks are lying or….???

    2. i got to thinking about ur comment about ur daughter spending too much time chit chatting with her interpreter so u stopped having her have an interpreter. this just kinda struck me – why would she be chatting with the interpreter and not with her peers? To what extent do we keep removing the opportunity to have sign language in a child’s life in order to stop them from using it. is that a form of social engineering.

    ur comment also got me thinking about the time i went on my son’s class trip and observed how his classmate who had a CI spent all of her time interacting with the interpreter – on the bus, in the hall ways, during the activities and while the interpreter was interpreting and i thought – its kinda weird – it’s integration but its not really integration.

    I was wondering – given how strong your daughter’s English language skills are – any thought of letting her have a Deaf school or Deaf program experience at some point? I’m just wondering about the peer acceptance stuff and the more fully bilingual-bicultural opportunities for her.

    Also some of the folks ive been talking to re: the early early implanting are saying the jury is still out – we dont know if it really is the magic bullet that many folks are trying to portray it to be.

    I do look forward to the dos and donts u come up with – its important

    peace

    patti

  46. handeyes
    Sep 03, 2010 @ 00:00:55

    Jospeh Riolo

    where have you been chap???

    Thank you for sharing and for the apology if it was in fact your conjecture that mislead them. Not sure if it was. But the apology is nice all the same – can i assume this apology is extended to AFA as well?

    I believe that there are / were groups in England and France that have called for a moratorium on implanting babies. I’m not aware of one group calling for one in the U.S. yet.

    Re: Deaf and Hearing individuals in the US feeling strongly that a moratorium on implanting infants and children should be in place now – yes, i know many individuals who hold that belief and opinion.

    I may get there some day myself – especially when folks tell me that the risk of possible complications are better than allowing the child to be Deaf or when a judge deprives parents and child the right to decide when and where to use the CIs or when i find out about the big big big money involved in CI companies and the lawsuits or when i see folks saying depriving children of a fully natural and accessible language is a parental right … – i get a bit cranky but i’m gonna return to my happy place of believing that we all want that which is just right and good.

    I dont advocate for depriving a child from English (in its various forms) and I hope others wont advocate for depriving a child from ASL

    Joseph – i am glad to see you here. Even though we often disagree, I do like ya.

    Peace

    Patti

  47. K.L.
    Sep 03, 2010 @ 00:21:10

    Hi Patti,
    This is a matter of semantics. An AVT session is not the same as following the AVT approach. If you are using AVT, you don’t sign. Period. If you are including an AVT therapist as part of your bi-bi therapy, you are not actually following AVT, you are simply including some of its lessons in your plan. Hard to explain, but many of the AVT folks do get irritated when people try to tell them to “just include ASL in their AVT”.

    As for the interpreter, my daughter was bonding with her more than was healthy. She was ignoring the teacher, and not trying to follow her. It wasn’t during recess or other kid times, but the times when the interpreter wasn’t there, my daughter actually did better in class. She paid better attention, and did her work more correctly.

    Last, if we put her in a Deaf school, it would be private, not justifiable with the school district, and so we would have to pay for it ourselves. Not in my budget, and at this time, my daughter is very happy in her school and would not want to switch anyway. Also, there are no good Deaf schools anywhere close. I will not allow her to be in a live-in residential school.

  48. Miss Kat's Mom
    Sep 03, 2010 @ 02:22:02

    My daughter started with ASL and hearing aids. She did not have access to speech with her hearing aids. While we were living as a bi-bi family I got very “high and mighty” about oral families, and parents who chose CI’s for their children. I only knew one family that had strongly used sign with their implanted children, so I honestly felt like I was the only “good parent” and the Deaf community completely convinced me that ASL was the only right decision and that all those kids who fall behind and then resent their parents for growing up oral….because that was all I had ever seen.

    Then we got the CI, and saw “behind enemy lines”. And you know what? I was SO wrong. These kids are happy and healthy and they grow up and are doing just fine! The problem was that I was only seeing one side. Why do you hear the same story (grew up oral, with varying degrees of success, found ASL as a young adult, and joined the Deaf community), because those are the people who seek out the Deaf community! The strong AG Bell oral deaf people AREN’T in the Deaf community so I was never exposed to their story.

    So, you asked about Deaf vs nearly hearing….it is a hard thing to explain. My daughter hears EXTREMELY well. She can hear and understand every sound in English. (She is still learning the language though) So, yes a lot of people assume she is “fixed”, but honestly she is a jump, a slipped hat, a strong wind away from silence at any moment. Her hearing is great (she scores 96% correct in her booth testing of very similar (gum vs gun, kite vs kit) words and that was only with 1 CI) but it isn’t perfect. But it does give her access to spoken language.

    So, you say that all children have the right to ” fully natural and accessible language”, but I would ask, at what point do you consider spoken language to be fully accessible? My daughter can hear and discriminate all speech sounds, wouldn’t that be fully accessible?

  49. Dianrez
    Sep 03, 2010 @ 02:49:52

    Miss Kat’s Mom, my standard is: if the kid can understand speech and function like any other in a hearing classroom, go for it with all gusto. If there is any question, or delay, or gaps, ASL is an important tool to keep in the picture to give ongoing support. Yes, with all available tutoring, assistance, etc., I believe you have all bases covered in that contingency.

    There is a special concern with functionally HOH kids who grow up in a nether world where it is easy to overlook missing parts in the kid’s perception and assume too much. It isn’t fun to be on edge, guessing all the time to bridge gaps and relying on one’s wits constantly. They fall between the cracks rather easily and develop attitude problems before a parent or teacher becomes aware of the warning signs. The field still has a long way to go in supporting the HOH child or adult.

    Along with the parents in this discussion, I’m all for keeping ASL as part of a fully featured educational program that emphasizes strengths. Trends today show that ASL is becoming accepted as a second language by both hearing and deaf/Deaf/HOH people, so it can be valuable later on even if not needed.

  50. Karen Mayes
    Sep 03, 2010 @ 12:34:45

    I have been somewhat busy in the last few days…

    Hmmm… I read the comments and I was thinking of what Dianrez said… about bilingual approach. May I respectfully point out that there seems to be one thing that people appears to forget… ORACY. I know this word has “ora-” attached to it, which brings up the bad rap (orange, orangutan, etc… are the exception 😉 ) Okay, people taking French learn to read, write, and SPEAK it. It’s not called speech therapy, then what is it called? Oracy, or spoken form of language. My children have shared with me their bemusement at the way this worked; my kids ALMOST have NO speech defects, and yet they are pulled out of the classroom for the speech therapy when they really don’t need it. Hmmm… Instead, they want just to talk (not all the time, just practicing talking, like the students taking foreign langauge classes, practicing to talk in different languages.)

    That’s why I feel that the spoken form of English needs to be redefined… instead of being treated like speech therapy, in the medical view point, why not change it to the educational point of view? As I have stated in the past, it seems to me that the “oracy” is still very vague, even today while it’s very clear in the educational systems for students taking foreign languages. Hmmm…

    Patti, I apologize if this is not related to your blog… I was referring to what Dianrez said in her latest comment…

  51. Candy
    Sep 04, 2010 @ 22:39:08

    Ok Patti…

    A disclaimer, I do not have CI and do not have children that have CI. However, I have inquired about getting a CI and have met several members of the CI team at my last appointment.

    You said:

    – when u put out % can u follow it with a (from….) so we know what study u r referring to

    Excellent, that is what we need to do. We also need to make it clear whether the statement we make is just an observation or based on conversation with other CI users.

    Then…you said:

    – do u know what the rate of folks junking their CIs are. my understanding is its pretty significant after adolescence and up – after the novelty of it wears off and folks get tired of the labor of “passing” i do know that some folks totally cant live without their CIs but i also know there is a significant percent that have chucked it but still have the device in their heads because to undergo surgery to get it removed is risk-ridden (as is any surgery)

    I’m looking more at what you said above:

    but i also know there is a significant percent that have chucked it but still have the device in their heads because to undergo surgery to get it removed is risk-ridden (as is any surgery)

    How do you know? Be specific. Was there some statistics you have come across or was it something you have seen in the course of your job? Based on conversation with deafies? What?

    I had the opportunity to ask a lot of questions when I met the CI team, including the surgeon himself.

    I asked about paralysis, the answer I got was that they don’t cut that fifth nerve (off top of my head) as they make every attempt to avoid that, so paralysis isn’t an issue these days.

    I was told that if I have CI, they will ask me to stop wearing my hearing aid in my better ear for at least three months to give my implanted ear a chance to work with my brain in recognizing sounds and words. Since I am an adult, the requirement is different for me than it would be for a baby. Wearing my hearing aid in my other ear while my implant is activated and on for the next three months will just further distract my implant and the chances of seeing any success will be minimized. The CI team knows I use ASL and they know my family is culturally deaf. They have no issues with it. They are just amazed that I speak well and discriminate words well, considering the fact that my family is deaf..and on top of that, I do communicate with my spouse in ASL. I was not told NOT to use ASL, I guess it is because I already have speech as it is and I already can discriminate words.

    The surgeon prefers to operate on my better ear, but because I choose not to, they will operate on my worst ear. They will not go against my wishes. The chances that my implant, if I go for it, will work is higher because I have used hearing aids in both ears for eons. For adults that have not heard a sound in years and have not worn hearing aids are not guaranteed that the implants will work. For babies, the implants success is much higher than it is for adult for obvious reasons. There is no guarantee that the implant will work for me. They think it will, I do have a better chance with it. I know the risk. There’s always risks with every surgery. KL is right when she said “However, from what I have read, Deaf kids with certain malformations in their cochleas are at higher risk anyway, just because of the internal structure of their cochlea” I was told the same thing, when I asked about it.

    Whether or not I will go for it is something I will have to decide. My love for music and to be able to hear as much as I have since I was diagnoses moderate to severe as a child, is something that I cannot live without. My hearing has gone down at least 20 db in my worst ear and 15 db in my better ear. My word discrimination reflects someone with a mild to moderate hearing loss. What this mean is that I have been using my remaining hearing with HA to understand and decipher sounds and words. I do use my ears to the best of my ability and beyond. CI is not for everyone, obviously.

    When and if I do get one, I will share the good, bad and the ugly, I promise. We all need to know these things.

  52. handeyes
    Sep 04, 2010 @ 23:40:42

    KL – thanks for ur reply
    i understand about not wanting to send ur daughter to a sleep away program / school. Wondering if at any point u or MKM think a bi-bi summer camp might be a good experience for ur daughters

    The reason i ask is that I often meet Deaf college students who cover the rainbow of communication / language / degrees of being Deaf who say – i wish I had known about Deaf culture sooner, i wish i had known about Deaf history sooner, i wish i had an opportunity to hang out with other Deaf kids sooner etc

    this applies to the Deaf students who use CIs and are oral.

    The lack of strong programs and the low incidents of children being Deaf does create a great many academic problems

    i have long wished for a short 15 minute type of teen program that showed a variety of Deaf kids working on science projects, ASL poetry, interviewing VIPs etc kinda like the old PBS Zoom program – have this one broadcast via the internet – just to kinda bring that into the homes of kids who are spread all over the country.

    just wish we could think big and produce more and get it out there for families and kids

    dont forget the do’s and don’ts. sorry to nag but i do value ur insight and experiences so dont want to loose sight of that

    peace

    patti

  53. Karen Mayes
    Sep 05, 2010 @ 00:03:13

    Do… treat CIs as just hearing aids.

    Don’t berate nor put down the parents for making the decision.

    Don’t go around saying “I hate CIs” with a degree of hostility, making people with CIs feel like they are also hated, even though it might mean the CI technology is hated.

    Be OK with some who like speaking and listening, but be firm with wanting to understand what they are talking, so please use ASL… that’s what I do to my son… I ask him to please use ASL so I can understand his rapid-fire talking, ha.

    That’s all I can think of…

  54. handeyes
    Sep 05, 2010 @ 00:05:58

    MKM

    thanks for sharing – the Deaf community is pretty broad so im not sure it was all members of the Deaf community urging u towards ASL and English for MKM but most folks in the Deaf community do have concerns with implanting children. Re: AG Bell Oral Deaf people – many, many of them sign. It is rare to see purely oral folks and most of them are not by products of oral schools they are byproducts of having been put in the sink or swim school of hard knocks and passing in the public schools.

    but i do not have %s here – it is just based on my observations.

    It is a shame that there is some stigma for oral folks when they get “caught” signing (even the past president of AG Bell Association Jay Wyant had to defend and justify his wee use of a few basic signs at the end of a video interview cuz an member gave him some grief about it) and some stigma for Deaf ASL folks when they get “caught” talking or listening to the phone or music etc.

    twain shall never meet – is just a tad bit old

    re: your question “but I would ask, at what point do you consider spoken language to be fully accessible?”

    I have also been advocating for a fully NATURAL and ACCESSIBLE language. Natural meaning “you dont have to work for your words” – Miss Kat’s still has to work – she has to undergo 2 major surgeries – in her life time there will be more for the newer versions of CIs etc, she has to go the AVT, she has to go to oral summer school in a different state, she has to go to oral school, she has to go the mapping etc

    this is not natural. it is artificial. it is your RIGHT. I am not calling for a moratorium in your right. i recognize i am pretty much a hippie in many of the ways i view our bodies and technology etc etc.

    But Miss Kat’s still has to have those CIs on and working for her to access those words and it is iffy – im sure some days are better than others

    i understand that u feel depriving her of the opportunity to hear and speak is wrong.

    again i am GRATEFUL and THANKFUL u have not deprived her of the opportunity to sign and see ASL

    I meself am a partially Deaf person. moderate to severe. there is much i can understand easily – there is much i can not. I understand the wind you speak of for Miss Kat.

    ASL is a fully natural and accessible language even though i have learned it VERY late in life. It has enhanced my world rather than hurt it. Just as English has enhanced my world rather than hurt it.

    MUST every Deaf child be raised bilingually in the U.S. of A – it would be nice ; ) but really what i am advocating for is that NO Deaf child and/or parent be told they are forbidden to use ASL with their child just as i would oppose any program that told a Deaf child and/or parent they are forbidden to use English (or another mother tongue) with their child.

    MKM – if you have any dos or donts u feel we should know about – pls list them out. ur experiences and povs r very important to me.

    Peace

    patti

  55. handeyes
    Sep 05, 2010 @ 00:07:48

    Hi Diane

    beware of the “function / functional” jargon. or if we must – lets put it in ” …”

    its just a very loaded term me think

    re: ASL becoming more popular, accepted and common place – it would be great to move from ASL as a remedial – port of last resort for “oral failures” (another loaded term) to being a ‘given’ along with English folks (i am not that kind of extremist mind ya all)

    peace

    patti

  56. handeyes
    Sep 05, 2010 @ 00:21:49

    Karen – ur comment re: oracy opportunities is related methink and i thank u for sharing.

    seems to me that even the Oralist educators have tried to move away from the word oral (it really does have alot of less than desirable associations – dont google image it folks – especially when the kids r around) so oracy as a term is a bit problematic for me – as u seem to indicate too

    i understand ur point re: spoken language socialization opportunities etc. – more cross-cultural interactions in general i think are good for everybody involved

    re: your point about having to remind your son to sign – i think this is something that triggers a bit of resentment for some Deaf ASL folks. As a person increases his/her Hearing however imperfect it may be s/he may be inclined to utilize that privilege in ways that diminish the Deaf folks in their midst.

    I have seen lots of Deaf folks who can speak and have varying degrees of being Deaf – expect others to sign to them but then they themselves do not return the favor – they will speak to the Hearing person or speak for the ASL Deaf person and not sign for themselves. It can create a have and have not dynamic at times. Im not saying with ur son that he is intentionally doing anything – he is just a kids being a kid but how do we help the kids who become young men and women know that when u r around other Deaf folks – it is impolite to not sign (if no interpreter present etc)

    re: your dos and donts – Thank you.
    re: “treat CIs as just hearing aids.”
    that item is a bit problematic for me because:
    1. they are not hearing aids
    2. there are alot of UNKNOWNS about them that we all should be advocating for answers on
    3. CIs coupled with pure oral approach might lead to a cultural and linguistic genocide. Hearing Aids never posed that risk

    but for all ur other items – im comfortable with those and thank you

    Thanks

    peace

    patti

  57. handeyes
    Sep 05, 2010 @ 00:39:05

    Candy –

    Thank u for stopping by and dang u have ur reading glasses on!!!!!

    u asked if i was talking of some satistical study or just from “conversations with deafies”

    from conversations with people who have CIs – that

    also i will try to get a copy of the paper Dr. Edwards presented at the Gallaudet 150 anniversary conference re: folks junking ur CIs but it was more of a qualitative type of thing not even an ethnographic study – more like anecdotal from what i can remember.

    Candy – i do thank u for ur full disclosure here (not really a disclaimer methink but a good ole fashion – FYI and i thank u)

    I wish u all the best in ur decision making

    peace

    patti

  58. Dianrez
    Sep 05, 2010 @ 01:13:24

    This is about using the word “English” when one means “speech”. For example: a child “being educated using either English or ASL.” That’s putting it poorly…Deaf children in schools that use ASL are also educated in English in all its forms, including spoken and written.

    I’d like people to use that concept–English is the whole language, not just its speech. It is not an alternative language to ASL, but a parallel one. It is taught right along with ASL in bilingual programs.

    Oral schools do not “educate in English”, they educate using spoken language instead of ASL. To use the word that way implies on the other hand that ASL schools do not teach English.

  59. handeyes
    Sep 05, 2010 @ 01:41:20

    Hi Dianrez – not sure which comment it is u r responding to above but yep i agree with what u r saying

    ASL has never been about excluding English

    where has Oral / Aural only (Oralism) has been about excluding ASL

    peace
    patti

  60. Joseph Pietro Riolo
    Sep 05, 2010 @ 02:27:34

    This is in response to your inquiry on whether my apology that I offered to Miss Kat’s Mom also extends to Audism Free America. I don’t see anything from AFA that can disprove my conjecture. It is important to know that I do not, and will not, assert that AFA supports any form of ban on cochlear implant for babies and young children. Conjecture is not same as assertion. AFA is totally silent on whether it supports or opposes any form of ban on cochlear implant. The video that I referred to in my previous comment is still on AFA’s blog. Does this mean that AFA agreed with the video or does this mean that anything in the video did not represent AFA? Nothing at AFA could indicate either way. If AFA issues an explicit, unequivocal position that it does not support any form of ban or moratorium on cochlear implant for babies and young children and for anyone, I will discard my conjecture pronto. It is very possible that I overlook something in AFA’s blog that disproves my conjecture and if this is true, I would appreciate being pointed to place(s) in AFA’s blog.

    To return back to the discussion on hand, I want to make a quick comment on the naturalness of ASL. While I can understand how some people, especially ASL users, prize the naturalness that ASL embodies; the fact that ASL (or any signed language) is natural does not mean that it is better than or superior to the artificiality that cochlear implant embodies and is used to convey the spoken English language (or any spoken language). There is a logical fallacy called “Appeal to Nature” that addresses this kind of thinking. If cochlear implant makes it possible for a baby or child to access the spoken English language and it succeeds in doing that, the distinction between naturalness and artificiality becomes less important.

    Miss Kat’s Mom showed that her child is able to access the spoken English language. K.L. showed that her child is able to access the spoken English language. It does not matter if the means to access a language is natural or artificial. Telling them and other parents of children with cochlear implant that their children are using the artificial means to access the spoken English language can be considered as arrogant and is not helpful for dialogue. Like the word “function”, let’s leave the distinction between naturalness and artificiality at the door.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

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

  61. Karen Mayes
    Sep 05, 2010 @ 10:03:22

    Actually, speaking and listening come naturally to my son and he’s not doing it on purpose. He just gets excited and slips into his comfort zone a few times. I have met many Deaf people who just “forget” and I just ask them to please sign so that I could understand them better and often they’d say oops, sorry and quickly signs up to make sure I understand and things are fine from there. For an example, there’s a Deaf guy who works at FBI in MD visiting my Deaf landlord now, and he is NOT fluent in ASL. I don’t let it bother me, we get words across with basic signs and mouth movements. The point is the ability to communicate. He’s very comfortable living in the hearing world, his choice and I respect that… through respecting, not to judge. He’s not increasing his ability to talk with his CI; instead he has shown the increase in using ASL since he got the CI, believe it or not.

    Well, the CIs are just like other machines… hearing aids have their own flaws as well. Same as heart pacemakers, etc. There’s always be new problems popping up as long as any bio-mechanical products are invented and updated :-/

  62. Karen Mayes
    Sep 05, 2010 @ 11:21:33

    Dianrez, I am assuming that your comment was addressed to my comment?

    You are correct, when we see/use the word “English” in the Deaf Culture, we subconsciously conjure up the images of “speech” and “written English” and the infamous belief that Deaf people’s English reading level is 4th grade. We need to remove these conjunctions. Even Patti acknowledges that there is a lot of issues with the words “oracy”, “oral”, and ‘oralism”. It’s a bit ironic that we have no problem with the word “orator” which is delegated to hearing community, but problems with other words carrying “ora-” due to the bad rap, thanks to the history.

    That’s why I feel that we need to roll up the sleeves and change the Deaf education. Even we need to change the images of “Deaf”, to a more positive light, after viewing Kittel’s latest vlog about the nature of the comments from the hearing population in reaction to his last year’s vlog.

  63. Karen Mayes
    Sep 05, 2010 @ 12:06:15

    Correction: I did not make a change of subject after discussing the landlord’s oral Deaf friend… I was remarking on my son’s increasingly usage of ASL after receiving his CI… my apologies.

  64. handeyes
    Sep 05, 2010 @ 14:35:38

    Joseph

    Thank you for your reply. I am a member of AFA so i can point you to this comment as a confirmation that AFA is NOT calling for a moratorium on CIs at this time nor has AFA ever formally called for a moratorium on CIs. We do have members who oppose the implanting of babies and children for a multitude of reasons. As we do know of scholars and researchers who do the same. Again i know of no call for a ban on CIs in the U.S.

    For further proof of AFA’s position please see the AFA petition – we have it in English and in ASL – it clearly calls for an impartial, independent investigation of CIs. If we were calling for a moarotirum – we would make it known. We are not shy ; )

    Re: artificial and natural – Joseph I wonder if you have read “Forbidden Signs: American Culture and the Campaign against American Sign Language” and “Damned for their Difference: The Cultural Construction of Deaf People as Disabled” – one focuses on the US and the other on the UK – both are by notable Hearing scholars

    CIs by the parents own testimonies are imperfect and inconsistent. I do believe that they have seen gains. Understanding and diciphering sounds in an audiology lab or special settings is very different than out and about or at the Thanksgiving dinner table. I am not saying that they are NOT seeing improvements – i am saying that the improvements REQUIRE a wealth of alternations on the child’s physiology, environments, socialization, and interactions.

    I understand why they go this route and i know they love their children.

    If you are saying the word artificial is offensive – pls direct me to another term that would be more suitable.

    There is also the other key word which is “FULLY”

    Im not really prepared to leave the terms at the door because i think they are important to the full, big, true picture discussion but i definitely would appreciate guidance in what terms / word choices would be most respectful

    Joseph – as always i enjoy ur brain. I’m also glad you show up here as you are a Hearing Deaf* father of a Deaf son so if you can share any of your own experiences or insights – education, uses of sign language, relationship within the Deaf community, etc.

    If you prefer not to – no problem. If you do feel comfortable sharing – I thank you in advance.

    Peace

    Patti
    *NOTE: when i originally wrote this comment I had been told previously that Joseph was a Hearing father of a Deaf son – further down in the comments here Joseph explained that he is Deaf so i apologized further further down for my error and also wanted to note the correction here.

  65. handeyes
    Sep 05, 2010 @ 14:57:09

    Karen – thanks for your comments

    re: ur point that some kids due to their physiology (natural or augmented via CI or HAs) would be hard pressed NOT to hear. it is coming in and they do gravitate to it. I see this all the time. I am not saying stop that or deny them that. I’m just saying DO NOT deny them access to ASL also and some programs as KL stated (AV) are founded on the principle and mandate of NOT allowing the children to use their eyes so they can supersede that natural disposition with the Oral orientation. (geez i hope im using the right jargon here – started typing artificial and function a few times – oy)

    so let ur son hear of course. He was blessed to be born into a family that already used ASL so he was exposed to it early. He was not actively denied it and the denial to a natural and fully accessible language is still happening in homes, living rooms, classrooms across the US and it creates oodles of problems.

    The T.C./S.C. root which was an attempt to make a hodge podge approach – whatever it takes etc – according to the COED report pretty much left kids with a little bit of this and a little bit of that – thus semi-lingual in both English and ASL – that is NOT cool folks.

    Re: Deaf education needing to be reformed – AMEN to that

    big time

    there are MANY obstacles that we will face with this – but a meeting of the minds and good hearts of folks like we have here might actually yield us some marked progress.

    As Tove Skutnabb-Kangas stated – CIs are not the problem in and of themselves – it is the push to deny the child a fully natural and accessible language in conjunction with (and/or because of the CIs) that can lead to crimes against humanity / language deprivation etc

    I know this is a MIGHTY strong statement and it came from an older Danish woman who wore her hair up in a bun, had spectacles on, and a shawl. She is not a radical – she is a humanitarian.

    Karen – re: ur son increasing his ASL after getting the CIs – what do you attribute to this change / increase?

    re: the comments under Kittle’s vlog – i would not gauge the public sentiment based on comment sections in any online system because some folks just say horrible, horrible, horrible things – i have seen some of the most offensive things under the white house youtube comment sections. just makes me weep.

    however, it is (and should be VERY upsetting) to see these anti-Deaf comments (just as when i see racist, sexist, heterosexualist, antisemitic, etc comments) – i have seen them in many article threads – NYTimes re: Deaf actors opportunities, CIs articles, Unity for Gallaudet protest Washington post articles, online articles re: HFEB, etc

    Yes, some folks truly do think to be Deaf is a horrible thing. Yes, some folks do think that Deaf people are a burden on society. Yes, some folks do think to hear and speak is superior to being Deaf and that stinks.

    It truly does.

    to change it – i guess we need to:
    – confront it peacefully and lovingly and name it for what it is (audism)
    – ensure that we are not contributing to this notion ourselves in our own actions and practices
    – love the folks who hate and bless them in our hearts
    – go forth and get busy – making high quality positive Deaf ASL materials
    – engage in positive and proactive activism
    – ask questions and learn and grow
    – don’t become what we hate
    – dont take it personally – its more about them than about us

    peace

    Patti

  66. Miss Kat's Mom
    Sep 05, 2010 @ 17:36:12

    I feel like you can’t claim that CI’s and oral education could cause “cultural geneocide” (which hearing aids could never do) AND claim that they don’t work in situations outside the booth. Either they work well enough to grant a child the hearing and spoken language to make them functionally hearing and cause a great decline in the Deaf community, or they don’t. Can’t have it both ways.

    Second, Dianrez, I am NOT talking about speech, I am talking about spoken English. Speech is nothing more than the sounds that come out of your mouth. The language is English. You can have speech without fluent language and you can have excellent spoken language with very poor speech.

    Third, I provide a research link that showed that non-use in implanted children is very low. NO ONE has provided any information that says otherwise, but it continues to be said. I think that is grossly unfair. I would like to see any other information that disagrees.

    Also, there is talk of “work” for my daughter to learn spoken language vs. ASL, as well as how fully she understands it. Yes, it takes TIME for her to learn language, and we choose to put her in therapy, but honestly, 99% of her learning comes from just hearing language, just like any other child. It takes 5 years for a hearing child to be fluent in spoken language, and it will take Miss Kat nearly that long as well. She picks up language from other kids, tv, everywhere. Therapy is simply to train her brain to listen more effectively, not to teach language. I have a friend who gave her son a CI at 18 months and he never did formal therapy. He was caught up to his hearing peers by age 4.

  67. Miss Kat's Mom
    Sep 05, 2010 @ 17:41:55

    I’ll give you a quick example of why you can’t sign in AV therapy, and maybe you will understand.

    My daughter was at her bi-bi school in pull out therapy and the therapist was supposed to be working on word discrimination. She was supposed to find out if Miss Kat could hear the difference between the word BOAT and BAT. So, she put a picture of a boat and a bat in front of Miss Kat and said and signed BOAT. Well, DUH, of course she can SEE the difference between the sign for boat and the sign for bat, we wanted to know if she could HEAR it.

    That is why you can’t sign in AVT.

  68. Dianrez
    Sep 05, 2010 @ 19:30:05

    >>Speech is nothing more than the sounds that come out of your mouth. The language is English. You can have speech without fluent language and you can have excellent spoken language with very poor speech.<<

    When I read that, I thought, how true, Miss Kat's mom. All these years of intensive speech and hearing training and oralists still insisted the children were learning English, but they actually ended up with poor speech and poor language (English, written and spoken). And yet people everywhere proclaimed the miracle of hearing.

    If CI's truly removed the difference and all children double-implanted with CI's from age 6 months truly spoke and wrote English like any other child by age 18, I'll forever shut up. I promise.

    However, I am unconvinced, and further completely disillusioned with people in the hearing-speech industries and the educational systems that hinge everything on hearing and speech first and foremost.

    Due to their history, everything the oral-auditory people say needs to be examined with skepticism and demands for quantitative proof. That may be coming, (yeah, its been 25 years) but remember, every apparent improvement is hailed as proof of a complete miracle. And we still see hordes of young adults without enough speech or English (in ANY form) to compete in everyday life.

    I am still seeing CI implantees in schools for the deaf, in NTID and Gallaudet. Obviously, the CI is not a complete answer so I don't want to hear excuses why this is so and therefore every baby that fails the neonatal tests should be implanted immediately.

    The mindset that hearing is THE answer and that restoring it as early as possible will lead to a complete resolution is a stubborn one, and defending it is even more difficult to tolerate.

    My experience tells me: 1) Hearing is not crucial to life, education or success. 2) Despite the evidence of successful Deaf people who do not hear, speak or even have adequate English, hearing is still considered vital and indicative of desperate measures and efforts. 3) People in the business of restoring hearing and related occupations are prone to exaggerations and are convinced of their own exaggerations beyond reason. 4. Parents and their children are targets of these claims, and are harmed by them when too late they prove to be unrealistic. 5. The harm is in two areas: educational delay because of overemphasis on speech and hearing to the detriment of academics, and family/social divisions that appears in the late teens or adulthood.

    Possibly there are adult CI implantees who will refute this experience. Bring them on. For every one you show me who is talking, listening to the radio, talking on telephones at a reception desk, attending meetings without interpreters, chatting fully and easily with family across the table and behind them or in another room, I will show you three or more who still need special services and rely on ASL for a satisfying social and educational life, and who feel a painful disconnect with their families compared to their hearing siblings. And these people will have a range of skills in speaking, lipreading, reading and writing from minimal to excellent.

    Perhaps another 25 years with today's "new and improved technology" will prove me not only wrong, but also antediluvian. The past 70 years of constantly "new and improved" hearing aids certainly hasn't. There will never be anything new about the claims of the hearing industries.

    Throw all the new and improved stuff at the child as one will, but put education and family communication first. ASL is a far more valuable language than most hearing people are willing to admit, and its acceptance has deep, deep roots in the psyche.

  69. Dianrez
    Sep 05, 2010 @ 19:58:03

    The example of why one can’t use ASL in AVT therapy stil left me mystified. What was described is a typical pullout speech/hearing lesson, and of course isn’t a lesson in using language or ASL.

    As I understand it, schools that rely on AVT use it all day long, with complete exclusion of ASL. Correct me if I’m wrong.

    Because it takes more effort to listen in a modality and language that one isn’t fluent in, lessons in arithmetic, sentence construction, science and citizenship are going to be slower-paced. The teacher will need to stop more frequently and catch up students who aren’t as quick as others. Activities will be different: the teacher will assign more paperwork, more hand skills work, more crafts in order to have time to pull out students that need extra reinforcement.

    By the end of the day, what has been learned? In a typical first grade AVT classroom, you will see a gap compared to a typical first grade hearing class in the number of vocabulary words, the skills in arithmetic, the number of stories read, and the answers to written lessons. Don’t tell me that they read the same books as in hearing first grade. What I want to know is: can the child pick up any of the first grade books and spontaneously read from it?

    This is the same as in old-day oral classrooms. Over the years the gap widens and by age 8 to 10 there are considerations being made to move the child to a sign language-using classroom or school due to lack of achievement. By that time, however, the gap is so wide that little progress is made thereafter: fourth grade reading level when the average high school graduate has at least eighth.

  70. Miss Kat's Mom
    Sep 05, 2010 @ 20:11:57

    If a child is ready to read and do the academics in a hearing classroom, they will no longer be in an oral deaf classroom. They will be mainstreamed in the hearing classroom. The oral deaf classroom is for the kids who are still behind, it is going slower, helping the kids catch up. Once they catch up, they are mainstreamed, that is the goal of oral education.

    Again, AVT is defined as auditory verbal THERAPY. It is a therapy model, not a school model. There is no such thing as an AV school. AV methodology requires being around typically hearing children, therefore a deaf school, full of deaf kids would not be AV. I believe you are talking about the Auditory Oral approach. Auditory Verbal is different.

  71. Miss Kat's Mom
    Sep 05, 2010 @ 20:16:30

    As for will all children bilaterally implanted at 6 months learn to read and write like any hearing children…..I think they would. Some will do great, some will struggle, but so do hearing children. They will be hearing well from infancy, so why wouldn’t they?

  72. Karen Mayes
    Sep 05, 2010 @ 21:42:23

    MKM, thanks for explaining the differences between AVT and AV methodology. I understand it better… will remember this.

    Patti, I believe it has to do with my son’s degree of comfort of being in the Deaf community, as well as him growing up in the Deaf family. We make it clear to him that CI is not a miracle, that it’s just the attitude and the level of knowledge which could influence the attitude and that he has to be patient, etc. Also, he fully understands the meaning of full access to communication thanks to his experiences with Bi Bi school in Midwest, to mainstreaming, as well as his experiencing the slow hearing loss on a personal level.

    Whatever decisions I made in regards to my children’s academic placements, I usually made them with their input and their willingness. My daughter was the one who WANTED to try out mainstreaming and she did that for a year and half and she decided enough to it so I followed her lead. She wanted to go back to her old Deaf school, same as my son, even though he has CI. I did not make any decisions just because of CI… FAR from that. In fact, before he returned to his old school here, he asked if he should take it off for the Deaf children’s sake. I said why he should think that way? He said he loved his CI, but did not want to make any enemies because of it. I told him that it was up to him to set an example, that he should make it clear to his peers that it did not define who he was on the whole. So far he has been wearing his CI to school with no problems. That he was still the old David, even with CI.

  73. Joseph Pietro Riolo
    Sep 05, 2010 @ 22:11:07

    I take your words and will not regard the video as representative of AFA’s position. I am discarding my conjecture. It is now in trash.

    It is possible to make your points without using the words “artificial” and “natural”. It will be challenging but it is doable. Almost everything that we do is far from pure natural. The writing system for the spoken English language (or, “the written English”) is mostly artificial, for example. But, almost nobody really cares if it is artificial or not. When it comes to cochlear implant, all of a sudden, the artificiality in cochlear implant gets the bad reputation when it in fact does help some parents to accomplish their goals for their children with cochlear implant. As a saying goes, we can’t argue with success. I am not forcing you to stop using the words “natural” and “artificial”. One of my reasons for making a suggestion not to use them is that artificiality usually carries the negative connotations and parents of children with cochlear implant will resent that.

    I have not read the two books that you mentioned. I probably will not have time to read them but will add them to my list.

    When you wrote that I am a Hearing father, does this mean that even though I am deaf, my mind, body, soul and spirit are of the Hearing culture? Or, does it simply mean that I am hearing? If it is the latter, I was born deaf and am still deaf, just for the record.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

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

  74. deafa
    Sep 05, 2010 @ 23:41:13

    I may be late at replying this, but I wanted to reply to KL for saying those who ditch their CI because they were implanted late should not ever be implanted in the first place. I think many would disagree with that . Many had HAs since age two or three (like me) and while it is not “good” as CI we don’t ditch them, and I highly doubt CI users ditch their implant because of lack of sounds either. If you ask me, I think they ditch them because they are seeking deaf pride or experienced audism. I don’t care how well a person hear or how young they were implanted. Of course some might just rather go organic and be technology free… there’s all kinds of reasons why they will do it so it isn’t because they weren’t implanted young. I know teens who love their implants and they were implanted late (born deaf with HAs). Believe me, if they really wanted to hear, they wouldn’t ditch it, they keep working with it. I have CI back in 2003 in my late 20’s (because I was a oral deaf who was frustrated and desperate to improve my hearing) , born profound deaf with hearing aids… it is alot of work to benefit from it but you’ll get there. I still wear it , I don’t have to but because of no sign languages and I have kids to communicate with who need their momma, I can’t cut them off, not at least until everyone know ASL.

    Anyway, it doesn’t matter how young or old the person was implanted, they are going ditch or not.

  75. Dianrez
    Sep 06, 2010 @ 00:06:43

    Reasons to ditch a CI are as varied as the excuses for ditching a hearing aid. With respect to the CI, these are the reasons I’ve heard of:

    –too expensive to replace the broken processer (other things to pay for first.)
    –comparatively, the benefit was not all that great compared to the hassles: buying batteries, maintenance, mappings, level of frustration or expectations not met, inconvenience.
    –poor mapping or need to remap (again).
    –malfunction: certain frequencies don’t sound right or are missing, need to replace the internal component
    –the original CI and related services might have been free, but subsequent maintenance, supplies, mappings, service and replacements aren’t free.

    I haven’t heard anyone say it was to fit in Deaf Culture or otherwise because of peer pressure. It gets talked about, but no one to my knowledge has gone that far to satisfy an imagined peer expectation.

    I wouldn’t give up my reading glasses because somebody said they make me look ugly, but would if they broke, got scratched up, lost a lens or an earpiece. Ditto with anything else. If it really helps, it stays no matter what peers say.

  76. Karen Mayes
    Sep 06, 2010 @ 11:04:29

    Dianrez, my son (and other people, I am sure) needs their CIs as you and I (and other people with poor visions) need our glasses.

    Oh yes, I have heard of children, especially older children/teenagers, ditching CIs in order to fit in the Deaf Culture so that they could be more accepted. I believe it’s part of growing up… my son on and off experiences the peer pressure and sometimes toys with an idea of ditching his CI so that he could be more accepted. He hears his peers ridiculing and talking negatively about CIs and it’s uncomfortable for him.

  77. Dianrez
    Sep 06, 2010 @ 12:57:10

    I’m sympathetic to your son being harassed about his CI, but believe that if he gains enough from it, he’ll resist the peer pressure. This is one of the severest tests that a CI can get–the other test is how much actual help it gives.

    As with anything else we learn or pick up in life, if it suits our purposes well, hell and high water won’t usually get us to give it up. Your son will need the backing of his family and true friends to withstand the peer pressure, as with any other life problem…the CI’s positive aspects will stand the test provided they are strong enough for him.

    Because peer pressure can be destructive generally, I’d talk with the school authorities and the PTA and ask for a sensitivity training program at all grade levels. My concern here is that it could divide the future Deaf community as the hearing aids did in the past.

    This includes both staff and students. A lot of influence comes from unwitting staff who praise the CI and make students feel superior somehow for using it.

  78. Karen Mayes
    Sep 06, 2010 @ 13:53:49

    Oh, no one is harrassing my son… he just listens to people talking about CIs in general, albeit negatively. He gets the anti-CI clear and loud from his peers and the Deaf adults. It would be nice if people stopped talking about CI in negative and sympathetic way in front of anyone who wears CIs. And he said that no one… nor any teachers had “praised” CI at school and I have NOT seen anyone praised CI to him or to me. More than often, we hear negative things about CIs from the Deaf community, to the point of feeling alienated.

    But yes, it would be a good idea that the Deaf schools get involved in reducing the negative backtalk about CIs.

  79. deafa
    Sep 06, 2010 @ 15:53:31

    The praises over CI are out there. Look at news articles and researches. And I think teachers praise it as well. You know people tour parents to help them decide and they look at “WOW” when they see children with CI….

    It’s isn’t the CI they are being negative about, but audism.

  80. Karen Mayes
    Sep 06, 2010 @ 16:11:43

    I am talking about the Deaf community in general, not the hearing community. Of course, praises are more common in the hearing community. But in the Deaf community, it’s opposite and that’s where the children and youths with CI feel more keenly. I have observed Deaf youths without CI discussing CI negatively in FRONT of my son for the last year. My son did tell me how the Deaf adults discussing negatively about CI a few days before he underwent the CI surgery, that “many” deaf babies died from CI, etc. This NEEDS to stop… same as the CI marketing needs to tone down its claims that CI is a miracle, misleading the parents. Both sides need to change.

  81. deafa
    Sep 06, 2010 @ 17:48:30

    Why do you hang out with them then? Hang out with CI people instead.

  82. Karen Mayes
    Sep 06, 2010 @ 18:19:21

    Patti, I made a blog about your blog.

    http://deaftranquillife.typepad.com/blog/2010/09/attitudes-toward-cochlear-implants.html

    Your blog is inspiring and I thank you for it.

  83. Karen Mayes
    Sep 06, 2010 @ 18:21:11

    deafa, I wish you well. Peace.

  84. Karen Mayes
    Sep 06, 2010 @ 19:39:31

    Also, another blog was recently made in reference to the attitude toward people with CI.

    http://nostalgicchildhood.blogspot.com/2010/09/does-cochlear-implant-ruin-beautiful.html

  85. Miss Kat's Mom
    Sep 06, 2010 @ 21:52:22

    Deafa, are you saying that children with CI’s shouldn’t be included in the Deaf community. I think that is a bogus position to have. You can’t have it both ways. You can’t say that they are still Deaf and need ASL AND that they aren’t welcome in the Deaf community.

  86. deafa
    Sep 06, 2010 @ 23:08:27

    I’m just saying why are you hanging out with people who are saying these things to your kids? I wouldn’t hang out with people who make fun of my deafness.

  87. deafa
    Sep 06, 2010 @ 23:09:30

    and that hanging out with deaf with CI would be more understanding anyway.

  88. Karen Mayes
    Sep 06, 2010 @ 23:19:16

    deafa, I understand where you are coming from now… before, I was not sure of what to make of your earlier comment. I’d still hang out with the same people nevertheless… it’s the ignorance which is hurting and we need to be patient. I don’t believe in the idea of CI “fixing” Deaf children. It’s all in the attitudes and once one understands that CI is just a hearing aid device, not a personality altering machine, one readily accepts the person with CI. It’s the rap that is attached to the CI which sends mixed messages, affecting the attitudes, to both hearing and Deaf communities, which frustrates me.

    To be honest, when we first got the brochures with DVDs about CI (part of marketing), my stepmom watched the DVD and she wept at the “miracle’ story and my father dryly warned her that it was just marketing, not 100% truth. But the marketing seems geared to hit the parents of newly diagnosed babies, soooo… hmm. A bit biased, I have to say.

    All right, take care.

  89. Karen Mayes
    Sep 06, 2010 @ 23:23:10

    Besides, it’s rare to find Deaf children with CIs in Deaf schools nowadays. There are more Deaf children with CIs in mainstream schools. People with CIs usually “find” each other and Deaf communities in colleges (RIT/NTID, Gallaudet, CSUN, you name it.)

  90. Candy
    Sep 07, 2010 @ 00:44:55

    Here we are seeing examples of an opinion by Deafa, and opinions are fine, except in this case, Deafa isn’t able to back up that opinion with a FACT.

    we probably should do more of fact searching.

    Deafa says:

    “And I think teachers praise it as well. You know people tour parents to help them decide and they look at “WOW” when they see children with CI….”

    Is this something you assume/guess? If so, then realize that it may not be true. If it is something you can back up with a fact, show us. For some reason, when I read what you said, I reminds me of older generation who always talked about how they were the “poster child”. Remember, we need to stay current with facts and not something that happened years ago.

    Karen…

    I once asked a parent (deaf) if I can ask their child questions about CI, the parents said, sure. The kid was eager to tell me everything about it. Obviously he loves it. He is very aural (uses ASL) but, is improving on his speech. I can see him getting better over the years. He is demanding to get another CI and go bilateral. You know how you see kids demanding a wii or 4 wheeler and stuffs like that? He’s demanding FM system and another CI. His dad said said, no, you don’t need it and he’s arguing with his dad over it in front of everyone. It was funny. That ain’t a spoiled child, this child knows what he wants! This is a culturally deaf family right there! That family was open to CI and it was an extended family involvement that got this child to go for a CI in the first place, but with parents approval.

  91. deafa
    Sep 07, 2010 @ 00:59:39

    Go look at ci circle youtube comments and blogs.. there even teachers blog as well. They praise CI

  92. handeyes
    Sep 07, 2010 @ 01:18:15

    hi all

    i aint ignoring ya – just been very busy and i appreciate what u all have been sharing and saying here.

    Joseph – i totally must apologize as i was misinformed. somewhere someday i thought i saw someone identify u as a Hearing father of a Deaf son. My referring to u as Hearing was not meant to mean i didnt think u were “Deaf” in spirit etc. It was simply because i was misinformed.

    You are a Deaf father of a Deaf son – would very much value your experiences raising a Deaf child and language(s) etc just as i would if you were a Hearing dad.

    so my bad and my apologies to ya.

    Im gonna go up and note my error in that particular comment statement in case folks dont read further down – i dont want my comment to mislead / misinform folks. Many thanks for correcting me.

    Re: word choices – ill muse more about it.

    MKM – just a quick note – “cant be both ways” i think that is what i often feel like from the other side at times – folks saying “my child is still Deaf (when she sleeps)” to “my child can hear everything extraordinarily well”

    its like which is it – she is only Deaf when swimming, sleeping, or those rare moments the CIs are off or is she still Deaf when she has them on because she is not really Hearing (meaning a fully Hearing person)

    re: the linguistic and cultural genocide assertion – from my read of the scholars who have been examining this – it is not so much how well the CIs work or dont work that pose the risk – it is the fact that the Oral / Aural ONLY wave has arrived FULL BLAST all over again and the wind and tsunami behind this wave is the “claim” that the CIs virtually make the child Hearing so therefore s/he does not need ASL and in some quarters u will see folks claiming that ASL is actually a detriment to spoken English

    we have been there before folks

    if Deaf folks seem a bit sensitive about this – it is because we have been there.

    we have studied our history

    GENOCIDES are not cool. and genocides ALWAYS target the next generation always

    so to all the parents here who are actually GIVING ur children ASL – u r NOT NOT NOT part of this cultural and linguistic genocide according to my read of the literature

    now there are others who will say otherwise – there are others who will say – by virtue of getting them implanting and wanting them to be more Hearing than Deaf you have contributed to a genocide

    i will NOT say that because i do believe that they are STILL DEAF but i do know that there are some parents, programs, doctors, audiologists, teachers, judges that aim to not allow them to have “Deaf time” who aim to “take the Deaf out of them” just as was done to Native Americans

    the result is we saw a wide scale loss of “peoples” full nations and full languages have been wiped off this planet

    NO ONE SHOULD WANT THIS

    no one

    ASL Deaf & English are NOT MULTUALLY EXCLUSIVE

    we have been sold and told that lie way way way too many times folks

    there is no harm in giving them both

    there is GREAT harm in denying them one or the other

    im sorry im coming off very strongly here but I can not fathom why anyone would ACTIVELY want to deny Deaf children ASL and English. They deserve the best.

    We need to REALLY and TRULY look at systems that prevent Deaf children from having access to ASL and English

    Peace

    Patti

  93. handeyes
    Sep 07, 2010 @ 01:57:22

    Karen – thanks for ur blog entry and for all u r contributing here

    really appreciate how folks are dialoguing

    re: some of what KL wrote and deafa and Dianrez responded to –
    i think “truisms” are a bit dangerous – meaning saying all babies getting implanted today are gonna be FINE, never have any complications and be happy and nearly Hearing, and love it

    truisms simply are not true

    that being said – i will note that i have come pretty DANG close to asserting a TRUISM above re: giving a Deaf child ASL and English is a good thing

    maybe we can look to what George Veditz and the other good educators had to say way back when the first wave of Oralism was trashing and flashing across the bilingual landscape – any thoughts on some of those notions?

    https://handeyes.wordpress.com/2010/09/05/veditz-nad-resolutions/

    re: picking on folks with CIs – not cool at all. and good parents (Deaf, Hearing, Hard of Hearing, with CIs or not) would tell their own children NEVER pick on someone because s/he has a CI or s/he is oral

    likewise good parents will tell their children with CIs never to pick on someone one who doesnt have a CI or is ASL

    this may be one of the adverse fall outs of the spread of CIs – it really has caused division between folks with stars upon thars and those without – even with own families it has caused rifts

    and that is REALLY unfortunate

    re: the marketing of CIs – wow it is totally totally totally slick!

    i dont think anyone can deny that

    i think KL talked about the $$$$ of it, the greed, the corporateness etc

    one person familiar with the lawsuits and familiar with other types of devices that re implanted (pacemakers, hip replacements etc) said that if any Company had the problems that Advanced Bionics had with their faulty CIs – they would be closed down already

    i was shocked – i asked why do u think they weren’t closed down yet. the person replied “because in some folks minds the risk of leaving a child Deaf outweighs any possible risk of injury”

    not cool

    we really need to be asking some serious questions about the cochlear implant INDUSTRY

    peace

    patti

  94. Miss Kat's Mom
    Sep 07, 2010 @ 02:38:35

    Ok, for me, there is Hearing and there is not. If a child has a hearing loss, they are by default NOT Hearing. So, no matter how well they hear, a child with a hearing loss will never be Hearing. An implant can not make a person Hearing, it can make them a deaf person who hears, just like a person with a moderate loss can hear with a hearing aid. That person with a moderate loss who hears with a hearing aid can still self-identify as Deaf, as can a person who hears and speaks using a CI.

    As for genocide, oral education and CI’s don’t make deaf people Hearing, it makes them oral deaf. Yes, children are way more successful with oral language now than they have ever been in history, so the Deaf community has a decision to make. They can either shun themselves into nonexsistence OR they can choose to become more open and accepting of deaf people who listen and speak. It is their decision. The responsibilty for a “genocide” would lie with the Deaf community itself.

    Again, I did not (and could not) intend for my child to become Hearing with her CI (and I don’t believe any parent does) I wanted her to be Deaf and to use a CI to hear. The difference is in the signs. She “hears (at her ear)” NOT “hearing (at her mouth)”.

    As for “denying ASL”, here is how most hearing families view it. They want English to be their child’s first language. They see many pro’s to having English as the native language including the ability to share a first language, the ability of the family to use colorful, fluent language with the child, right from the start, the ability to explain everything to their child with great ease, and on and on. It is not that they don’t believe ASL is a good, full language, it is just that they want English to be the child’s first language.

    There is a lot of research out there that shows that the key to a deaf child’s language development is NOT which language they use, but how early they get access to fluent language. So, what does that mean for a family who doesn’t know ASL? That means that their child will NOT have fluent language models for many years, while the family learns a new language. They family will have to ALWAYS communicate in a language in which they have inferior skills. They will have to try to communicate, explain, and teach their child in a language that is not their first language, a language which they are still learning, a language in which they are not comfortable. That can lead to serious language delays and issues.

    I recently read (and will find a citation) that the number one correlating factor in deaf children’s language skills was, get this, Mother’s language fluency. So, if a child was learning one language and the home language was different, the child’s language suffered. This was true in oralism, (English as a Second Language homes did poorer, as well as low socio-economic/ poorly educated parents) as well as ASL. THAT explains why Deaf children of Deaf parents seem to do better, because their family uses a fluent language with them, right from the start. It isn’t that ASL is the answer, but that LANGUAGE is the answer. If we can give deaf kids FLUENT LANGUAGE from the start, modeled by their fluent parents, we have better acheivement.

    So, how on earth do we make hearing parents of newly id’ed children fluent in ASL overnight??? We can’t. So what is the next best thing? Some believe that it is giving the child access to the language the family is ALREADY fluent in, and allow them to learn and succeed in that language.

  95. Karen Mayes
    Sep 07, 2010 @ 10:22:24

    No, it’s not true that all the people (babies, children, teens, adults, you name all ages) who are implanted nowadays are fine. I have been hearing, from the CI Circle yahoo group of which I was a member for a while, there are a few parents who have to go through the emotional turmoil dealing with the complications, re-surgeries, etc. Not everything in the yahoo group is roses, believe me, and it helped me a lot, learning about the complications, etc. so that I can be on the watch out for my son. So far, things are good. As I and others know, the CI devices are just machines that wear down, like the computers, etc. Of course, I have seen some parents praising the CI to heavens… but not all parents. Overalls, I found that yahoo group very realistic and a bit heartbreaking just reading the parents’ comments detailing how they deal with CIs and children, especially if the children have additional needs… these parents, I admire a lot.

    MKM, you raised valid points about learning the languages. Actually, it’s not a new concern… we are seeing the same thing in the hearing population also… especially with Hispanic population here in USA. I believe we have talked about this a few years ago… at how people of Indian and Asian descent tended to excel in English while other people of other nationalities struggled, depending on the backgrounds they came from. My two Deaf kids have an advantage, their two Deaf parents are already fluent in both English and ASL, so they are at the level or above their grades in English. When my son was mainstreamed at a middle school, there were four other Deaf kids. All of them… ugh. One of them, I understood, since he had additional needs. But three others… hmmm… I found myself thinking, hey, they’d be better off attending Deaf school, etc…. I could be wrong, but they were really struggling. Hmmm… that was two years ago and I don’t know how they are doing nowadays anyway.

  96. pattidurr
    Sep 07, 2010 @ 13:08:15

    mkm

    re: folks identity formation not being tied to how much they can hear or not – if we are talking about a cultural and linguistic identity – they need to be given the opportunity to experience the culture and the language otherwise many folks self-report that they grew up thinking they were a Hearing person who couldn’t hear – that they were literally socialized to be something they are not fully.

    Not the case for Kat – i understand but for many others it has been and will be and that is less than desirable

    re: English and parents “mother tongue” – ur argument i believe supports mine – that Deaf children should have both. English and ASL. Maybe its not the parents that provide the ASL – maybe its a ASL specialist that does home visits but it should NOT be denied to the child.

    Im sure u know about how popular and hot babysigns are for Hearing children. Hearing parents are using it because it has proven to help jump start cognitive, linguistic, and emotional intelligence soooo
    if Hearing parents can learn baby signs for their Hearing babies – why can’t they learn it for their Deaf babies?

    This does not mean the Hearing parents should never speak or use English with their babies – it just means they should have a working command of ASL.

    Seriously to say that the child must be altered again and again to fit the parents language knowing that the child is always gonna be Deaf is kinda hmmmmm just doesnt seem to be wholistic or humane. Im not saying dont give them English (whereas there are many Oral / Aural only and CI programs that say DONT GIVE THEM ASL) – im just saying give them ASL too

    which u have done so not sure why we keep explaining why some parents r ga ga over English – i understand it and value it. Im just saying throw a little love the ASL way too parents.

    my read of the research re: language development is:
    – give them a fully accessible language asap
    – give them models – folks using this language naturally asap
    – give them folks playing with this language asap
    – give them reading materials in this language asap (dvd in ASL r reading materials as it is frozen signed text)
    – read to them
    – love them

    re: linguistic and cultural genocide

    i gotta be completely honest with u MKM and my heart aches about what u wrote

    i see over at karen’s blog u praise the Deaf community for being so loving and accepting of u, kat and ur family.

    where is this ill-willed Deaf community u speak of that is shunning folks with CIs and dooming itself into oblivion?

    there may be rogue individuals who say really CRASH stuff about CIs and folks with CIs but as a COMM-UNITY you do not see Deaf folks saying we REJECT people who have CIs

    we do not

    i have seen the harshness go both ways and it sucks

    it totally sucks

    No culture can live, if it attempts to be exclusive. -Mahatma Gandhi

    Deaf ASL culture has NEVER attempted to be ASL ONLY
    it has NEVER attempted to be DEAF only – it has welcomed English, it has welcomed Oral Deaf folks, it has welcomed late Deafened folks, it has welcomed folks with HA and CI, it has welcomed, CODAs, it has welcomed, Hearing parents and community members but it has said…
    – do not diss ASL
    – do not diss Deaf culture
    – challenge audism

    The Deaf community has always been open but this “have” and “have not” re: speaking and listening is really creating a wedge and with it – lots of bonky crap. Snotty noses going up in BOTH directions

    read the sneetches from Dr. suess and put our eyes on the fix it up chappy

    im gonna assume – which is always risky of me – that some of the callousness in ur remarks is because my bluntness re: a linguistic and cultural genocide hurt u. If so – im sorry. i dont want that at all. It may be also that the thought of Kat being rejected at some point down the line puts up ur defenses. I can understand that but since u have given her ASL and Deaf culture – it is unlikely that she will have any difficulty navigating the gate to and from the Deaf-world.

    My husband is Jewish and we originally planned to raise our children with both religions (Judaism and Catholicism) but because Hebrew is a big part of the Jewish experience and because i did not want to have them feel “neither/nor,” we later decided to raise them Jewish and expose them to my Catholic traditions and fundamental principles.

    Our children will only be recognized as Jews within reform Judaism. I believe for the other tracts (conservative, orthodox, ultra orthodox) our children would need to undergo a special ritual bath because in those practices, the mother must be Jewish in order for the offspring to be considered a Jew whereas with reform – either father or mother suffice.

    My husband did worry of our children being rejected by other Jews to which once a friend said – “she would be Jewish enough for Hitler.”

    Deaf is Deaf – i agree. Jewish is Jewish.

    To me it is most desirable that the folks OF the minority value it because if they don’t it might still be used against them adversely. They may as well claim it for good and stand tall and proud.

    I never want Kat or KL’ daughter or any Deaf person to be rejected. I also dont want to see them rejecting Deaf ASL folks.

    Deaf people are .1% of the population – seriously. all it takes is a breeze to blow us out of existence – we need not usher in such a breeze but unite to say – hey human diversity and linguistic diversity is a good thing!

    When our daughter learned in some sectors she would not be considered to be a “real” Jewish person – she was rightfully offended. She is Jewish! She will not let anyone tell her otherwise but she knows some will try and that is their right.

    Peace

    Patti

  97. deafa
    Sep 07, 2010 @ 14:10:35

    Hearing person who couldn’t hear – that they were literally socialized to be something they are not fully.>>>> Growing up around hearing people only, I often felt like the only useful thing about me is that hearing people can look at me and feel blessed that they can hear.

  98. Miss Kat's Mom
    Sep 07, 2010 @ 14:21:44

    I’m not offended at all. I was blunt because I believe in telling the truth. If the Deaf community chooses to turn it’s back on people with CI, people who hear and speak, they will end up losing out and isolating themselves into history.

    Why are parents “ga ga” over English? Because 99.99% of situations in daily life require the use of English.

    Baby signs are not the same as commiting to your child’s first and native language being ASL. In the state I live in 90% of parents start with baby signs. By preschool, 80% choose oral language. In order for a child to learn ASL, ALL people in their life must continuously use fluent ASL in their visual proximity. How does that happen when the family only knows a handful of signs? This will lead to a serious language delay. A parent can not teach a child a languagethey do not know. It takes a person 5-7 years of use to become fluent in a language. So what happens to the child in those years? They don’t have fluent language models, so they fall behind.

    As for “altering the child to fit the parents”, that is not at all how families see it. I was giving my child the opportunity to have back something she lost. She had hearing, and then it went away. We sought a way to give it back to her. But, yes, it resulted in her being able to access my native language

    I assume your problem is with the surgery itself? That it is a radical solution to somethig that “isn’t bad’? But our point is, there isn’t another choice. It isn’t like we thought, “Hearing aids would work fine, but I will do surgery instead!” Hearing aids don’t work, that is why they are a CI candidate.

  99. deafa
    Sep 07, 2010 @ 14:34:19

    If hearing parents don’t like ASL they don’t have to use it, and they have been doing that for years. But they are doing themselves a huge disadvantage if they treat their deaf child like that. So don’t add ASL because you are doing deaf community a huge favor, but because you want your deaf child to grow and socialize and be proud deaf.

  100. Dianrez
    Sep 07, 2010 @ 15:45:09

    MKM, I believe you are being defensive because a few Deaf people criticized your having CI’s implanted in your daughter.

    Not all of us are critical like that—most will stay silent or admit to having varying degrees of reservations that it is indeed the best thing or anywhere close to “restoring what your daughter lost”. We have heard that before too many times and seen it proven false nearly as many times. But we are open minded enough stand by and wish the best for CI families.

    Actually, if you review history, most culturally Deaf people and their Deaf teachers and leaders were deafened late by childhood diseases that we now have immunizations to prevent. A large part of our cultural pride and resourcefulness originated with those who remember hearing.

    ASL was declared a “gift of God” back in 1910 by an adventitiously deaf teacher and continues to be a cherished and satisfying part of our lives today. Without it today’s Deaf would find our input and social interaction greatly dimnished and our existence reduced to near-isolation.

    We are open to admitting that the CI has its pluses and benefits, and the court is open on how enduring and what quality that benefit is. HOWEVER, (and don’t lump us with the few who declared open war on CI’s,) we are concerned about the harm that is being done to children being raised under restrictive methods that forbid ASL irrationally. In short, CI, okay. Prohibit ASL, no.

    We are concerned that parents and therapists are so sold on hopes of full mainstreaming success that their kids actually suffer gaps in their language, their useful knowledge and social sophistication, and their ability to compete in the wider world.

    We are not worried about emptying of our clubs for the deaf, closing of our schools for the deaf and cutting off funds for our college and related programs. We ARE worried about another generation of delayed Deaf people with isolation, additional psychological problems and disillusionment, and needing services that were cut off before–not to be started up again for years.

    So, MKM, be careful with your defenses because it could spread to other parents who haven’t implemented ASL as part of their childrens’ early education and thus become a rallying point for the pure oral-aural people.

    It is also offensive to people like me, because it negates my professional and social experience, implies that because I don’t choose to use speech that I don’t “use English”, and lumps all of the Deaf community with a few anti-CI diehards.

    It is our hope that in time we will see a greater heterogeneous Deaf community just as now, as many wearing hearing aids as not, now being supplemented by a growing number of CI wearers.

    It is your hope, as parents, that your kids will also participate fully in the family and hearing community that you know best. Perhaps it will happen, to a greater extent than in the past. Just not creating an even larger lost group that is neither fully involved with hearing nor with Deaf communities, please.

  101. K.L.
    Sep 07, 2010 @ 17:18:32

    I’ve been offline all weekend, and there was a lot to catch up on. Good dialog. I have a couple of things to respond to, so this will be a bit disjointed.

    First, if there is a list of do/don’t regarding hearing parents, please don’t make assumptions about the child’s hearing if they have a CI. Just accept them as they are, and don’t judge the parents for having given their child an implant. If they are there at a Deaf function, just be happy they are crossing the bridge, and be as helpful as you can.

    As to why you are seeing people with CIs at deaf schools. Remember, just because someone has a CI, does not mean they want to leave the Deaf Community or that they are only still involved with a Deaf program because the implant doesn’t work well. It could be simply that they hear better with an implant than they did with a hearing aid, and they like hearing better. It does not mean the implant doesn’t work, or doesn’t work well enough. I’d say it is a good sign that someone with an implant is choosing to both wear the implant processor, and be involved with Deaf programs or schools. Isn’t this exactly what we want to see more of?

    It would be easier if implants worked the same for everyone. They absolutely don’t. Or rather, how the person perceives hearing is very individual. It depends on how long they have been deaf, how much hearing (if any) they had prior to becoming severe/profoundly deaf, how old they are at the time of implant, the condition of the auditory nerve and believe it or not, how oral they were prior to implantation.

    Implants send electrical signals to the auditory nerve. Those signals then get taken by the auditory nerve to the hearing center of the brain. The implant (when mapped correctly) will send signals from the entire speech spectrum, so the person is no longer getting gaps in the pitch range as they may have with hearing aids. The key to how well they hear, is how well the brain can make sense of the signals it is now getting. And that can depend on how hard the person is willing to work to make sense of the signals. It usually takes up to 2 years to get the maximum benefit. In the early days, many Deaf may not have gotten accurate info about how much work would be involved for them to make sense of the implant, simply because at the beginning, neither did the audiologists. If you are expecting to hear easily, and it sounds like bells and chimes, you may be a bit disillusioned. Part of the reason the implants are more successful today is simply because people are being better informed prior to implantation on what to expect, and how much work is involved.

    As to “natural” language. Yes, my daughter has full access to verbal language. It is hard to explain, but she may be a “poster child” for implants. She bonded with her implant the day it was turned on, and verbal English is her primary language. We don’t sign at home, and she gets it all. The reason she has sign language is because she likes it, and I believe she identifies herself as a Deaf person. I want her to be proud of who she is, and how she communicates is not as important as that she CAN communicate. Her ASL skills are not as good, but when she is with signing people, she does manage to communicate with them as well, so that is what is most important. And her ASL skills will continue to improve. However, I never want her to feel social pressure to deny her implants because they make some other Deaf person uncomfortable. They are as normal for her as her glasses are.

    This is a big part of the reason why I am involved in the blogging world. I am trying to make the Deaf Community in general less hostile to implants, and more open and accepting of hearing Deaf. And that is exactly what she is. Yes, implants in general are not perfect, but for her, she test out within the “normal” range for hearing people, in her language and reading scores. In essence, her hearing is “normal” with both implants on. In reality, her distance hearing is a bit lower, but it has to be really noisy for her to be unable to have a conversation in noise and not to be able to follow it. As a matter of fact, her ability with both implants on, is about the same as mine. We both start to lose the thread of a conversation at about the same noise level.

    I fully believe that when more of the kids who were implanted prior to 18 months of age become adults (this will probably take another 10 years), a lot of the concerns being brought up now will be laid to rest. When my daughter was implanted, the minimum recommended age of implantation was 18 months, and because newborn screening had yet to happen, most kids were not even getting identified as having a hearing loss until about that time. By the time they got to the point of being implanted, they were usually over two to three years old. My daughter was part of a very small handful of kids who had gotten their implant at 12 months. And that was because of her having meningitis, which causes the cochlea to ossify, so they had to do the surgery quickly if they wanted ot get a complete insertion of the electrode array into her cochlea before it turned to solid bone.

    Basically, at this point, there simply are no adults walking around who were implanted at 12 months of age. They just don’t exist yet. When these kids grow up, they will be able to speak for themselves. Until then, we parents have to do our best to answer for them.

  102. Joseph Pietro Riolo
    Sep 07, 2010 @ 22:16:35

    Thank you for being willing to make an apology even though it is not entirely your fault. I wholly accept your apology. And, it is very thoughtful of you to make a correction to your older comment and this is more than I could expect.

    To Miss Kat’s Mom, I would very much like to know the citation to the information that you have about the importance of fluency in mother’s language. I know how important it is for mother to communicate with her baby. But, it is new to me that the level of fluency can have some influence over baby’s development in language skills.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

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

  103. Miss Kat's Mom
    Sep 08, 2010 @ 03:03:50

    Can anyone show me research that shows that Deaf children of hearing families who use ASL end up with better outcomes than oral deaf kids? That would blow my theory of shared language right out of the water….

  104. deafa
    Sep 08, 2010 @ 03:36:59

    There are plenty of testimony from deaf people themselves who wished they had better communication with their family. They are not robots with mind set only for education and speech.

    But if you are so desperate for an excuse to stop using ASL, go ahead and tell your daughter “no more ASL”

  105. deafa
    Sep 08, 2010 @ 04:10:27

    The closest thing I can think of is parents working with their children have the best result. A parent can not do that if they don’t learn sign language if it turns out that their child need it. from many testimonies from deaf people, they often say their parent never learned ASL so they don’t often communication with their parents. Now how are they going to help their children if they don’t communicate with their child? But really, I don’t like treating ASL as a last resort for the deaf, it put a negative attitude like it is just an assistance for the deaf instead of a language.

    as far as ci being mainstreamed, I don’t know the whole story with that because All I know that more deaf people are being mainstreamed with an interpreter as well. The school is more likely to accomodate them like they did with me — front row, FM, projector/board/smartboard, choose teachers who speak clearly, choose classes that have carpet, etc. Hey if severe/profound deaf with HAs survived all that in the past generations and still be caught up with their hearing peers, then it is no surprised CI deaf would too. Only time will tell how they truly feel.

  106. Miss Kat's Mom
    Sep 08, 2010 @ 04:42:41

    Deafa, you are completely missing the point. A hearing family and an oral deaf child DO share a language, whereas the example you gave (a child who uses ASL an a family that doesn’t) do not. The children that do the very worst are the ones that do not have parental involvement. One way that kids do not have parent who can communicate with them is that they use ASL and the family doesn’t.

    I am asking if there is any research that shows deaf children of hearing parents who use ASL do better than oral kids. I know that Deaf of Deaf do well, but they have a shared language from the start. My concern is that deaf children will fall very far behind while their parents learn ASL. They are not fluent models and how can they teach a child a language that they do not know?

    Again, wouldn’t being able to hear and understand spoken language give a child the ability to communicate with their family?

    Also, I don’t appreciate the judgement from Deafa. You do not know me, you do not know my family. You have no right to make judgements and assumptions about us. I am attempting to have a reasonable and educated discussion abut REAL issues and you try to come in and make it personal. Not cool.

  107. Miss Kat's Mom
    Sep 08, 2010 @ 04:44:19

    Also, about mainstreaming, the vast majority of deaf kids with CI’s who are mainstreamed do NOT have interpreters. They hear well enough to function in class using their hearing. Some have real time captioning, but it is rare for a CI kid to use an interpreter.

  108. Miss Kat's Mom
    Sep 08, 2010 @ 04:48:05

    Oh, and in the past, the majority of severe-profoundly deaf people who were mainstreamed did NOT catch up to hearing peers, hence the 4th grade reading level issue. By all research and measures the CI haas made a huge change. Kids are performing better than they ever have and they are catching up to their hearing peers in language, reading, math, and self esteem, something that has never been seen before.

  109. Candy
    Sep 08, 2010 @ 05:51:34

    Not all deaf of deaf do well, MKM. You’re referring to English proficiency?

  110. deafa
    Sep 08, 2010 @ 11:36:16

    I mean all sort of deaf are being mainstreamed, it isn’t just deaf people with CI. So just because child is in public school doesn’t mean anything because they are including everyone in public school nowadays. In the past most deaf with HAs did not have interpreters and they did fine.

    Candy, only deaf of deaf can do poorly if their parents don’t help them.

  111. deafa
    Sep 08, 2010 @ 11:38:57

    Just because a family do share a language, it doesn’t give them excuse to say “well I’m not fluent in ASL nor I’ll never be so I’ll just let the school take care of that”

  112. handeyes
    Sep 08, 2010 @ 12:02:54

    joseph asked for a citation?

    me want too – pretty pls mkm

    re: studies on Deaf of Hearing parents with ASL compared with Deaf oral – ive asked a few folks if they know of any studies on this and if yes – will share the info here

    re: not cool – yes true not cool to be dissing u and Deafa – no robot talk pls

    but since ya like blunt talk mkm – u got a mighty righteous undertone sometimes, me friend. u really come off rude and snooty at times. its usually when u DISMISS our life experiences, our language and culture, and our RIGHT TO EXIST

    and when u blame us for our own dismise and hold NO accountability ur way

    but i will attest i am a wee bit sensitive at times sooooo i shouldnt be implying u do those things all the time – u dont

    and i do appreciate how much $hit u probably get in the blogsphere

    its just u got some major inconsistencies here and there in the blogsphere – one minute u r singing the Deaf communities praise, next u r saying my daughter is basically a Deaf person in a Hearing made body, my daughter is a Hearing person who’s ears went Deaf and we r just working (really working) to return her to her natural state, Oral only programs allow ASL pull outs (you still havent answered if u ASL pull out is still part of Kat’s IEP this year), etc

    im not saying u r lying = i know u r speaking ur truths and i really really truly value that u come here and u share. its important

    but i want to be truthful too. so sometimes ur tone is irksome

    some times u spend more time telling us what we all should do with lots of assumptions about the who and what of we are – which is often incorrect and not so much asking URSELF and UR HUSBAND what in fact u might like to do on behalf of the Deaf community

    one minute u say – this is just a tool and an aid and languages – both are great and the next u say – gotta be English and they wont need or want ASL

    that is a problem cuz we been there done that – some of us are basically the same dB as kat if not even have more h EARing than she does and our experiences are valid

    so maybe most mainstream programs have cart instead of interpreters but some have BOTH and still its not enuf

    there are some REALITIES out there that are not rosey

    there are some REALITIES that on the surface look fine but go behind the scenes and someone is doing a MIGHTY lot of work to “pass”

    read any book on biracial people and u will see that duality is a tricky place

    its doable only if u r FULLY accepted on both ends

    u and KL have been saying “Deaf community do not reject folks with CIs” to which i reply “amen” – some of us here are saying “Parents (Hearing and Deaf i care not which) do not reject ASL”

    fair enuf?

    fair enuf?

    u say the CIs pluses outweigh any possible cons – we say the same is true with ASL

    we say Oral / Aural ONLY (meaning banishing ASL from the life of a Deaf child) is WRONG and UNJUST and INHUMANE

    to me this does not mean that all parents must use ASL fluently – this does not mean that all programs much have ASL masters – this does not mean that ASL must be the first language and withhold English until age 5

    what it means to me is:
    1. do NOT actively deprive ur child of ASL – this means oral / aural only schools with AVT and non-ASL home environements are NOT cool in my book.

    we have done this before folks – and even if u got a fancy chip or two to put into the heads of the babies – they STILL HAVE TO WORK FOR THEIR WORDS

    i am not trying to stop u from ur right to do this – i am just trying to ensure that while u do that u also ensure they have NATURAL access to a fully natural and accessible language via their EYES (and hands if they be Deaf-blind)

    u want me to say – nothing wrong with CIs – i cant fully say that cuz we dont have all the answers yet and there is a really NASTY system out there that actively prevents us from getting these answers – the truth gets deep sixed ALOT ALOT ALOT with corporations and greed

    ask ur urself why $50,000 CIs are covered by insurance but digital hearing aids are not?

    ask urself why there is basically a gag order on CI deaths?

    ask urself why some companies are still in business even though their CIs leaked and babies got shocked!? (advanced bionics)

    asked urself why it took a whistle blower to unveil the kickback system of one CI company and insurance fraud (cochlear americas)

    ask urself why these two unethical CI companies are AG Bell associations circle alliance partners

    ask urself why no one is screaming yet?

    ask urself why CIs has embedded themselves into hospitals, schools, EHDI services, and AG Bell association (its two circle alliance partners are CI co that have been sued)

    ask urself why AG Bell association went nuts on Pepsi for showing three Deaf guys signing in a wee short-blink-of-the-eye commercial that ONLY AIRED FOR ONE BLOODY DAY

    ask urself why AG Bell association never apologized or retracted that letter

    ask urself why u r not upset by these injustices

    ask urself why u have not done anything to stand with the Deaf community on some of these slights or unknowns

    ask urself why Deaf people are asked everyday “why dont you have a ci?

    everyday – which is like being punched in the stomach everyday – its like someone saying “u r not ok the way u r”

    MLK jr said “we must have the spiritual audacity to assert our somebodyness”

    CIs with oral /aural only push are in DIRECT conflict with our radical notion that it is ok to be Deaf

    i meet u more than half way in saying:
    – Kat is YOUR daughter and u have every right to do what u feel is best and right for her

    – I am thankful and grateful that u give her ASL

    – I love u

    what i would love to see is folks meeting us half way and say – we agree that ASL should be part of a Deaf child’s life and we would like to work with u to make that possible

    then we will all pretty much be signing onto the ICED New Era agreement

    sept 6-11 130 years ago this week the infamous ICED 1880 Milan Congress declared the incontestable superiority of Speech

    they used model students (many who became Deaf after acquiring speech), they used their research and data, and they used their power to create this reign of error that lasted 130 years long

    so so so long

    we do not want to see a new reign of EARa emerge

    we would like the inalienable right to exist – that i child have the right to a fully natural and accessible language AND AND AND of course the language of the dominant culture

    wow – crazy!

    other folks – i aint ignoring u just got a busy day before me and wanted to put this truth out on the table

    i do hope someone will check out the veditz NAD resolutions in the next people of the eye entry – i think there is alot of nice truths there that Deaf and Hearing allies asserted convention after convention only to fall on deaf ears

    oy – history and its repeating of itself

    peace to u all

    patti

  113. deafa
    Sep 08, 2010 @ 12:09:10

    And where’s your evidence that mainstreamed deaf with HAs and accomadation (not interpreter) do poorly in the past? They are so blend in the mainstreamed that you don’t know where to find them and they are usually test among their hearing peers that if you look at the school score, you wouldn’t know who is deaf and who isn’t. My sister and I blended in the public school. Well my sister is more blended in because she was never put in special education, she even took spoken Spanish for 5 years as a severe/profound deaf (I got to skip foreign language).

  114. handeyes
    Sep 08, 2010 @ 12:35:03

    fallacy

    mkm u wrote:
    “By all research and measures the CI haas made a huge change. Kids are performing better than they ever have and they are catching up to their hearing peers in language, reading, math, and self esteem, something that has never been seen before.”

    this is not what the good doctor reported at the AG Bell symposium – keynote dr. Pisoni – said we need the FDA to investigate the effacy and effectiveness of CIs. he said much of those “research” spouting statistics are actually testing of “does the CI turn on? does it work? does it register certain sounds and certain frequencies”
    ANSWER?
    YES YES it does generally

    now the BIG question the million dollars$$$$$$$$$ question “Does it consistently help children understand spoken language effectively?”
    ANSWER?
    The verdict is still out. it is still an unknown.

    this s a truth

    other research i have seen has said – its IMPOSSIBLE to RELIABLY DETERMINE what what is correlational and what is causal – (and perhaps even what is spurious)

    why? because parents are constantly chasing after the holy grail and moving their kid from program to program, from gadget to gadget, from method to method in their quest to make their baby “normal”

    i understand why they do – im just saying the researchers are saying – cant really consistently and reliably say its because of this or that or the other thing cuz there are TOO many variables

    also – if at some point we r interested in being brutally honest – id like to explore placebo affect

    that will be tricky but it may be of great interest

    peace

    patti

  115. Dianrez
    Sep 08, 2010 @ 13:09:17

    Asked on Facebook re. statistics on progress of Deaf children using ASL:

    Patricia Raswant replied–

    Options in Deaf Education by Cheryl Zapien
    http://www.facebook.com/l/eb209;www.listen-up.org/edu/options1.htm
    Be sure to scroll down to ASL (note #99), and you will come to a paragraph explaining why Deaf children who use ASL fare better in school… I’ll be back with a more recent article.”

    Thanks, Patricia.

  116. Dianrez
    Sep 08, 2010 @ 13:48:53

    Miss Kat’s mom…the oral-aural institutes you have attended summer programs in have got to you.

    “Kids are performing better than they ever have and they are catching up to their hearing peers in language, reading, math, and self esteem, something that has never been seen before.”

    Not again. Those people have been spouting this language for YEARS and we are all mighty fed up with their exaggerations and outright lies and the exceptional students that they parade to prove the “truth” of what they say. As a parent you are a target and a vulnerable one. They said it with the advent of miracle oralism, they said it with each new and improved hearing aid, now they are saying it with each improvement on the CI.

    Truth is, we are all so varied in our abilities, support, experiences and backgrounds that it is easy for them to pick up on the good parts and claim credit for it. In doing so they gloss over the shortcomings of their methods and ignore a LOT of failures and damage.

    What I find unethical and inexcusable is the way they exploit the vulnerable wanting an answer, a miracle. I’ll freely admit to bias: my parents were among these and the damage still remains even though Mom and Dad are long gone. I’m not just talking about 4th grade reading levels here, MKM.

    My concern is for your child and others like her. Buried under grand assumptions, industry claims and exaggerations, parental high hopes, aural-oral outright lies and unrealistic praises, she will have to face herself, her parents, and her expectations one day and sort them out. She will see for herself that the Deaf community is not a backwards community and question the people who implied so. She may have attitudes that won’t work for her once out of school. We all have been there and done that.

    I see myself in Miss Kat, and my parents in you. I see you dismissing the experience of Deaf people including Deaf professionals. It is disturbing and profoundly saddening…here we go again.

  117. Candy
    Sep 08, 2010 @ 13:51:09

    Patti, I know your questions are aimed at KL and MKM, but..

    fyi, HA are covered by many ins now, it has to do with technical insurance term, prosthetic, I believe. My insurance now covers HA and has for the past three years.

    You say there is a gag order on CI deaths? really? You have proof of that? Please share.

    What are the numbers of CI deaths the past five years, do you have that information? Is it directly related to CI?

    Re Pepsi letter, you and I will need to discuss this because I did not see Pepsi letter as looking down at deaf ppl, rather they were saying that “not all deaf people use ASL” and that the commercial portrayed only a segment of the deaf community. That was their message the way I looked at it.

    Looking forward to hearing (oops..seeing) your responses. 😉

  118. Mishka Zena
    Sep 08, 2010 @ 14:14:10

    This bears repeating:

    From Dianrez: ” It is also offensive to people like me, because it negates my professional and social experience, implies that because I don’t choose to use speech that I don’t “use English”, and lumps all of the Deaf community with a few anti-CI diehards. ”

    Do not make the mistake of lumping every Deaf people along with few anti CI diehards. This shows the extent of the ignorance of the person making this erroneous assumption. This includes Deaf people on the Internet. Because one did make that judgment, I lost respect for that person. Deaf people are more complex.

  119. Miss Kat's Mom
    Sep 08, 2010 @ 14:50:46

    No one “got to me”. That is a very offensive idea. I am well educated and can make informed decisions.

    The truth is that right now we are choosing to emphasis the second language. ASL was Miss Kat’s first language and we used it exclusivly for 5 years. She now has access to English throgh spoken language so we have switched our emphasis so that she will be BIlingual.

    BUT, I have read a ;ot of research and I have yet to see any that says that deaf children of hearing parents who use ASL have equal acheivement to hearing children. I HAVE however read the reasearch that shows that AV kids can. We do not do AV, but you can not deny the facts.

    A Longitudinal Study of Auditory-Verbal Effectiveness

    Dimity Dornan, A.M., Ba.Sp.Th., F.S.P.A.A., LSLS Cert. AVT; Hear and Say Centre
    Carol Flexer, Ph.D., CCC/A, LSLS Cert. AVT; University of Akron

    ” In her study, the children’s receptive and expressive language, speech production, reading and math skills, and self-esteem were assessed at various intervals during the period and the results were astounding. In language progress, receptive vocabulary, speech progress, reading skills, and math skills (yes… that’s ALL of the areas tested), there was no significant difference between the hearing and AVT groups of children”

  120. deafa
    Sep 08, 2010 @ 14:57:11

    Candy, if you asked me, I think your surgeon is weird for asking you not to wear your hearing aids after you get activated. I have CI since 2003 and none of them told me that. all they told me to keep wearing the implant. Of course I don’t know ASL and I can’t communicate at all without my HAs so I guess that’s why they never told me that. They knew I need something to communicate with my family while I’m adjusting . I’m an adult, you know, I have responsibilities to deal with. You CAN wear your hearing aids while you are adjusting your CI. And I’m speaking from experience. I don’t wear my hearing aid anymore though as CI tend to overpower my hearing aid.

  121. Candy
    Sep 08, 2010 @ 15:17:38

    deafa..,,

    ONLY for THREE months after activation, then I can wear it on my unimplanted ear as much as I want to. This makes sense to me because my good ear has worked hard over the years. Not wearing HA is only temporary. I have friends who wears both CI and hearing aid, and they like it a lot.

  122. Dianrez
    Sep 08, 2010 @ 15:27:36

    MKM, one needs to be careful with studies by those actively employed in the industries, as the one you just cited.

    I could come up with an equally matched cohort of students without AVT and obtain the same results. Key was CHOOSING the subjects. For example, from my class in a college for the deaf, I could give you x number of students, all with equivalent scores compared to hearing students.

    Backtracking them to childhood would show you that they came from varied backgrounds: oral deaf, hearing parents; ASL deaf of deaf parents, even oral deaf of deaf parents. Some wore hearing aids, some never did. All were considered advanced back in their primary and preschool days.

    The point being: it is easy to say that these were the direct result of AVT. Not considering other variables is not considered good research.

  123. deafa
    Sep 08, 2010 @ 15:42:33

    candy, That’s what I was talking about.. the three months of activation. They told me it was my choice and it doesn’t make a difference as long as I’m wearing the implant. the result would be the same. and guess what, I benefit from it within a month or so. I guess even doctors don’t always know what’s best.

  124. Candy
    Sep 08, 2010 @ 15:54:54

    Not necessarily: Doc don’t always know what’s best. More likely different CI teams have different take on what works best. Then again, protocols change over time. Procedures change over time too. In my situation, for years my left ear was doing all the work. Time to let the brain focus on my right ear.

    How long have you had your CI? And, how much hearing did you have before you got implanted? If you don’t mind my asking.

  125. K.L.
    Sep 08, 2010 @ 15:59:44

    Hi Patti,
    You asked if I could agree that all deaf kids should be allowed access to ASL. Personally, I agree that access to ASL and Deaf Culture is important. My problem is that I believe that parental rights superceeds even that, and I have personally seen kids using AVT doing great. I do not believe I have the right to tell their parents that they cannot choose this methodology. I strongly believe in diversity, and that not every answer is right for every child. Even ASL is not the right answer for every child. There simply is no single right way for everyone. So I cannot sign on to anything that would diminish the right of the parent to decide what is best for their child. You are asking me to sign onto something that I see as a slippery slope toward state control of how parents raise their children. You do not see it that way, but I do. So even though I believe ASL is of great benefit, I will not say I see it as a requirement. I think that is where we need to agree to disagree.

  126. deafa
    Sep 08, 2010 @ 16:12:08

    I had my ci since 2003 when I was about 26 years old. I’m profound deaf since birth in both ears -genetic and I don’t ever remember being able to hear without my hearing aids, it’s dead silent, but if I wear a headphone and turn the volume full blast, I can hear the muffle part of the music, barely though. I wore hearing aids since I was preschool, probably younger. I wore a bodyworn FM to school from preschool to 3rd. and BTE for the rest of my school years til graduation.

  127. deafa
    Sep 08, 2010 @ 16:24:45

    I don’t think they ever really talked about my hearing or my audiogram, The only copy I have says I have history of bilateral profound sen. hearing loss from the CI clinic And I was definitely a candidate. I don’t have any copies of any of my audiogram but I never cared either at the time as long as I got HAs . beside, my hearing was too distorted to pick up surrounding conversation with my parents. I

  128. Dianrez
    Sep 08, 2010 @ 16:37:33

    >>So I cannot sign on to anything that would diminish the right of the parent to decide what is best for their child. You are asking me to sign onto something that I see as a slippery slope toward state control of how parents raise their children.<<

    Let's get theoretical. The government already mandates what should be taught in schools and specifies what for each grade level. The parents do not have a say in it…they can home school, or send to private schools, but they still must assure the government that minimum requirements are met. So we can't truly say that parents are absolute in deciding what is best for their kids.

    Also: English is mandated as our official language, with some mention that a foreign language is required in advanced grades. Again, not much a parent can say about that.

    Whether ASL is to be included in such requirements is again a debatable point. I've heard that in Scandinavian countries their sign language is required as part of deaf childrens' programming. It concievably could be so here, once the benefits are better documented.

    Educationally, the state does have a lot of say in how we raise and educate our children. That's a fact, and the ultimate intention is to benefit the state–by incfreasing the quality of our educated population.

  129. deafa
    Sep 08, 2010 @ 16:39:00

    I personally think the school have a responsibility to teach ASL as a second language as they do with English or Spanish.

  130. Dianrez
    Sep 08, 2010 @ 16:39:43

    ack! Proofreading fail! *increasing**

  131. K.L.
    Sep 08, 2010 @ 18:49:48

    Hi Dianrez,
    So if we get theoretical, what happens if 10 years down the road, studies can prove that an oral only education actually works for kids implanted prior to 18 months of age? If the studies show that these kids, educated in a mainstream setting, without any form of sign language, show test scores in all areas at or above the norm for the general population?

    If the state is to require ASL for all deaf kids, it would have to be proven first that an oral only education falls to get the kids to meet educational standards. How can it, when there are so many kids who do just fine in that setting? Yes, there are some kids that don’t do well in this setting. That is why they have IEPs. Individual Education Plans. Each child evaluated individually to set the educational requirements that would allow that child to succeed. Unless ASL is mandated in all schools for all kids starting in kindergarten, I just don’t see how it could be implemented. And lets not forget how tight the finances are for school districts. If the government required all deaf kids to have an ASL interpreter in the classroom, then the money would have to come from somewhere. There are not enough interpreters to put into classrooms around the country for that. Nor would it be feasible to introduce that many interpreters into that many classrooms. This would have the effect of forcing all kids with any kind of hearing loss back into segregated deaf schools. Can you imagine the outcry for that move? That kind of cost and intrusion would not be able to be done without a ton of documentation to support it. And there is no documentation to warrant that kind of action.

    Bottom line? You simply cannot require parents or schools to teach ASL to all deaf kids. The logistics alone would prohibit that. And even without cochlear implants, oral families would have that kind of action tied up in courts for decades.

  132. Miss Kat's Mom
    Sep 09, 2010 @ 01:40:34

    I love that even when studies show things clearly (like the studies that show that kids implanted before 18 months catch up to hearing kids in language) people decide to then doubt the methodology. It is like the 9-11 “truthers”, you can show them stacks of proof, but if it doesn’t align to their previously held beliefs, they choose to ignore it.

    I have seen tons of adults who grew up happily as oral deaf people. I even know a few who grew up orally, learned ASL but STILL choose to advocate for oral education for deaf children. The world is diverse and there are many ways to raise a happy, healthy child.

  133. Dianrez
    Sep 09, 2010 @ 02:10:01

    Yes, there’s always the exceptions on both ends of any issue. That there are oral deaf adults existing is known to all of us, just as there are completely ASL deaf adults, i.e. non-oral English speaking existing who are equally successful.

    Studies aside, just let me say that it is possible to interpret and find flaws in any study involving so many variables as those done where controlled conditions are ethically impossible.

    Covering all bases by giving all tiny kids all possible avenues to learn seems the safest way to go until their strengths are known and the focus can become narrower. Miss Kat is in that fortunate category.

    It’s also safer to take all claims with a grain of salt, especially from those who advocate a restricted input such as AVT. Throw all the research out the window and go with common sense. An extra language never hurt anyone; but input confined to an incomplete sense often does.

  134. Miss Kat's Mom
    Sep 09, 2010 @ 02:51:02

    I just think that it is also important to make sure you give the child the best opportunity to learn the language of the majority. And everyone knows that the best way to learn a language fluently is through immersion. And yet, every single day Deaf people protest and argue AGAINST a child being immersed in that language.

    I guess the biggest sticking point is “access”. I (and I believe I can speak for KL as well) KNOW that my child (and every child I have ever known with a CI, save 2) has complete access to spoken language through listening alone. No, she does not have complete access to ALL sound, but the speech range, yes. She hears whispers as well as spoken language in noise, as well as at a distance.

  135. handeyes
    Sep 09, 2010 @ 03:35:08

    L’Shana Tova folks

    ill try to comment tmw – long busy day today

    For now … I coming bearing studies as requested. there is no known study comparing Deaf oral children of hearing parents and Deaf ASL children of hearing parents because very few children are raised one singular way – most parents hop around alot but stuff that is out there is: (biggest thanks to Dr. Christie for putting this together)

    Learning of a signed langauge has a positive effect on young deaf children’s spoken language skills (Preisler, Tvingstedt & Ahlstrom, 2002, and others).

    Proficiency in ASL has been shown in numerous studies to support English literacy in Deaf students. Prinz and Strong/Strong and Prinz show that ASL skill is significantly correlated with English literacy skills (students with hearing mothers who were relatively fluent performed similar to those with deaf mothers…that is, at the higher level)

    Preisler and Ahlstrom (1997) found that use of signed language (they studied Swedish sign) positively affects langauge development and social emotional development among pre school hard of hearing children.

    And
    Despite the increased implementation of cis and avt to support L1 acquisiition in deaf children “the efficacy of these procedures is inconclusive” (Eriks-Brophy, 2004, Goldin-Meadow and Mayberry 2001; Hyde 2002 etc

    One interesting study that Snodden reported was Watkins, et al 1998 where Deaf adults made home visits to hearing families with Deaf young children to share ASL and serve as role models….compared with another group of young deaf children who were exposed to oral only or signed code only as part of an early intervention program….during the “treatment time” the first group of kids had greater gains in receptive and expressive language and scored 2.5 times higher on a test of English grammar and developed vocabularies twice as large…

  136. Dianrez
    Sep 09, 2010 @ 04:41:41

    Miss Kat’s mom, I am afraid what you have said is inaccurate. Deaf children ARE immersed in English. Whether they have full access to it depends on how much they are allowed and able to see (and hear) of it. Note: the words SEE it–as vitally important as any hearing child’s hearing it.

    Now you are saying that Miss Kat and all other CI implanted children (except 2) are hearing spoken language with complete access? That I cannot believe, frankly, because we would have seen deaf children become hearing years ago instead of showing up in schools for the deaf at late ages and more than two-thirds learning ASL by their teens. Maybe you meant the latest edition of new and improved CI’s are resulting in completely hearing children by school age?

    Oh, my. I don’t know whether to be astonished, insulted, to laugh or cry. If that were true, all deaf babies would be double-implanted at three months of age and that would be it. Presto, no more deaf babies, no more schools for the deaf, no more need for ASL, no more special education, no more interpreters, etc.,etc. Problem solved! Imagine all the tax money saved that was spent on this .01 percent of the population that now has magically disappeared.

    Sorry if I sounded sarcastic in my interpretation of what you said. But, really! That is how most people would understand your words, i.e. literally.

  137. finlake
    Sep 09, 2010 @ 05:52:54

    Ermm… it’s way past my bedtime (nothing new, really). Uhm… I just want to chime my 2 cents. No, I have not read all the comments. 132 or 136… no way I can read it all at once thanks to self-imposed deadline to go to BED! lol

    Well… this is based on my observation, and by no means am I “hate mongering” to anybody at all. Since I’ve been exposed to the “Deaf pride” mentality when I was younger. Oh my goodness, 20 years ago… anyhoo, I have been noticing a lot of uhm… for lack of better wording, erosion of the old school Deaf commune senses. However, please do note I am _NOT_ enunciating the erosion in a negative light, nor positive light. I can safely say the Deaf community now a days is not like how it used to be.

    I cannot explain it in words, at all, really. You have to be there to get the gist of what I’m trying to convey.

    Of course, it’s fairly an obvious logistical point of view to claim the technology has contribute a massive amount of the “changes” from the old school Deaf community to the new school of Deaf community.

    Question is this. Do we embrace the change or do we resist the change? For me, I’m a firm believer in Darwinism attitude, and strongly believe the change is necessary. I don’t see why not for us, old schooler, start to accept the new Deaf community, and once the kindred sensation has been established, we could teach the new generation of how it was and maybe they’d appreciate us, old schoolers?

    I really don’t know the answer, to be frank, and I can safely say I absolutely admonish you, the Deaf/deaf people, on your duty to our future generation of the Deaf/deaf for they will be our burden and vice versa down the road.

    “To have the power without the wish is noble.” I’d like to pass that on to you, all of the communities.

  138. Karen Mayes
    Sep 09, 2010 @ 10:21:50

    I am copying and pasting my comment from my blog to this blog:

    “Anyway, okay… hmmm… “sheltering” from the Deaf community? DON’T. There will always be some people who’d rub us in a wrong way, same as in the hearing community. And we’d rub some people in a wrong way as well. My kids attend a bilingual Deaf school, involved in the Deaf activities, etc. Heck, my daughter signed up practically every afterschool activities that I need to know the schedule of the activites to make sure that she attends many. My son was fretting about afterschool activities, because of his grade status (he’s taking high school classes while he’s an official 8th grader and he wants to take high school afterschool activities but was told to wait for the answer… he’s hoping to get involved in academic bowl, yearbook club, etc…)

    The point is we are not letting the misguided attitudes to stop us from continuing to be involved in the Deaf community. As long as people ask us about our son’s CI, we will continue answering honestly. But we don’t toot about it, because it is NOT a miracle to us… it’s just a fancy hearing aid and he likes it a lot ~shrug~

    Just don’t let a few anti-CI people scare you away… they don’t represent us the whole Deaf community. All I can say is follow your child’s lead; if he/she shows a preference to hang out with other Deaf people, do let him/her. Just don’t close or tear down the bridges between two communities.

    :-)”

  139. handeyes
    Sep 09, 2010 @ 14:00:54

    in a nutshell i believe this discourse has hit its thorny place – the fault line

    and the fault lies with what? the audism behind cochlear implants –

    audism is the notion to hear and/or behave like a Hearing person is superior to being Deaf

    cochlear implants main purpose is to make a Deaf person hear – its “success” varies depending on LOTS and LOTS of factors

    CI purpose is to help Deaf folks be less deaf and to hear more so……
    they can “function” more like a hearing person and this is BY ITS VERY DEFINITION is AUDISM

    no this DOES NOT MEAN that parents or adults who choose CIs are AUDIST

    i am not saying that so just back off of the “extremist” keys unless of course u want to call me an extremist for love cuz i am totally trying to be worthy of that label

    I do come from love this morning and i do come from the place of justice and peace

    MLK Jr said positive peace (as opposed to negative peace) is not the absence of tension but the presence of justice

    it is UNJUST to tell a child you are not ok the way you are – whether it was from birth or from illness or bad medicine that made the child Deaf – it is not cool to communicate to them that they are a “child of a lesser G-d” because the G-d that made me also made thee and we all be made in G-d’s image

    what could that possibly mean – well perhaps it means that G-d is VERY VERY VERY diverse and that s/he actually wanted a bit of diversity in this landscape and that s/he thought its a GRAND thing that some folks can not hear or see or smell or some have darker skin than others and some have larger figures than others and some have different shaped eyes than others and some speak to me in Hindi and some speak to me in Navajo, and some speak to me in English, and some speak to me on their hands in ASL, or in El Sayed sign language, or some….

    this does not mean i dont think parents should have the right to implant their kids

    i understand why they choose it

    i can NOT accept that they choose it for the purpose of being able to EXCLUDE sign language from the child’s live and for the purpose of making the child hear so well that s/he will not even know they are Deaf cuz we KNOW the implanting is aggressive

    there is no way u can deny this

    – surgeries
    – recoveries
    – therapy
    – mapping
    – adjustment
    – avt
    – oral schools even in the summer

    all the kings horses and all the kings men might put this child back into the state that u long for but we still return to the mother of all questions

    ACCEPTANCE

    mkm – over at ur place when u spoke of the very hard and painful (meaning emotional and physically uncomfortable) experience Kat had with the 2nd implant getting activated and “hooking up” every day etc

    i asked about acceptance and you DENIED that it had anything to do with acceptance

    u said “she didn’t turn her head when you called her name” and this was ur main motive for the first implant

    from my POV and i understand that my vantage point is VERY different than yours – u did not accept Kat being Deaf – you did not accept that she would NOT be turning her head when u called because she could not H EAR u –
    this is an ACCEPTANCE issue

    u could learn to tap or flash a light or stomp a floor but instead u choose to change Kat so that she could HEAR

    u did not and do NOT accept her as a Deaf person

    i am sorry to be mean here but this is the HEART of my concern with CIs

    they communicate to a baby, a child, a young adult, and older person –
    you will never be enough to me. i do not accept you for what u are or what u became and i will do everything within my powers to make u what u should be….

    this is the opposite of unconditional love

    and we the Deaf community are expected to:
    1. be prepare to provide this unconditional love
    and generally we do – not everyone – some r really ugly and mean and i dont accept nor support them

    2. fix the damage – the emotional damage – and it is HUGE HUGE HUGE HUGE and the very products of this audism and there is NO way we can fully fill that hole cuz that me friend is the birthright of every child – to be loved for who and what they are unconditionally from their parents

    many parents do not provide – many dont (to their Hearing and Deaf children) and it has a mighty impact on them but MOST do

    most do

    now KL – your argument about why u can not support ASL for all Deaf children because u value parental rights over the rights of the child – i could buy your argument if i actually saw u actively opposing Oral / Aural only programs because they DENY parental rights they say NO NO NO signing. u should be SCREAMING about oral / aural only programs denying ASL, about the CI doctor in New Mexico that requires parents to sign a form saying they will raise their child Oral / Aural only or he wont do the implant, r the judge in Idaho what mandating that a Deaf child must wear her CIs all her waking hours – these all VIOLATE parental rights so if u really wanna be a champion of parental rights – please do

    why is it ok for parents and systems to DENY Deaf children language for their eyes but not ok for us to say – YES PROVIDE a fully natural and accessible language as well as English

    (MKM –– dont think i havent figured out that u no longer have ASL pull out for Kat – (this is stricken out because MKM has commented below that they are still doing ASL pull outs in Kat’s oral school. I apologize for that erroneous assumption) – dont think i havent figured out that u really are no longer providing her with a bi-bi experience at all except when she is out amongst the Deaf which seems to be pretty infrequently and don t think i have not figured out why this SHIFT has taken place.)
    NOTE: This is added Aug 31, 2012 – a week or so ago over at Dawn S. IN YOUR FACE blog entry re: Audist – MKM revealed that they have gone the spoken language ONLY route.

    If Cochlear implanting in babies is to really be as “effective” as some folks are tooting then the GOVERNMENT has a moral, ethical, social justice, civil liberties, OBLIGATION to ensure that these babies have access to a fully natural and accessible language and are introduced to their Deaf culture – (remember u said they are still Deaf so YOU as parents should be fighting hard to make sure they have an opportunity to learn about their culture and language in addition to the majority language that u r going through heroic efforts to make sure goes to their brain and out their mouths)

    once u start advocating for that – u r gonna see the mask come DOWN real quick on the CI companies and the oral / aural only programs – they r gonna fight ya and they are nasty so watch out

    lastly re: the 2 kids who were [late] implanted as babies and are not doing so well in MKM informal survey – I CARE ABOUT THEM

    yes – this is another HEART of the issue – i CARE about all of them

    I care about all the babies and Deaf folks who died from CIs

    maybe F E W in the last 5 years (Candy u go and try to find the figures – good bloody luck with that too – its nearly impossible and its NOT because it isnt happening – its because its hidden and because they are not STUPID – they are like u with the clever insertion of the word “directly” – no the CIs does not zap so powerfully that it outright kill someone (but it does zap sometimes true) but the complications from the surgery and the implant have caused deaths … so here someone jumps in and says “all surgery has complications, all invite infection, now they do the meningitis shots first, that doesnt happen any more etc” this is not acceptance of facts folks this is row row your boat down the Denial river)

    ONE DEATH was too many. TWO KIDS in one small program are too many.

    do you people have NO COMPASSION

    seriously – i have seen the most callous statements from some folks – NO HEART to the mothers’ whose BABIES have died from this thing

    imagine her pain. stand for ONE minute and feel the pain of a mother or a father who chose CI surgery because they were told and sold that it would be in the best interest of their child – so they did and s/he died. DIED. It has happened – do not DENY IT – that is disrespectful and immoral.

    do not chalk it up as progress and u gotta take the good with the bad.

    we are talking about a LIFE here. We are talking about a family. we are talking about an empty seat at the table. we are talking about a stabbing pain in the heart that will NEVER go away.

    We are talking about the truth. LOOK AT IT. Take a good long hard sad look at it. Imagine if it had been ur child – the GUILT u would feel i imagine would be insurmountable.

    we are not talking about the long ago distant past – just because it aint happening so much now and just cuz it didnt happen in huge quantities (Thank G-d) does not make that CHILD COME BACK TO LIFE

    we lost something

    the WORLD the PLANET lost something because of audism – because folks thought the child needed to be fixed so much it was worth the risk –
    possible death vs. deaf

    please can u not see me crying right now

    1 Death was too many

    2 “failed” implants is too many

    and the numbers are higher than that folks – it is bigger than a bread box folks

    ACCEPTANCE

    I respect and accept parents right to choose CIs – i just wish they didnt freel it was necessary

    by your own testimony u r physically, linguistically, culturally, and emotionally altering your child – when a person undergoes a sex change they must undergo 1 YEAR of counseling to make sure it is what they really want and all is good to go.

    would it be wise to have parents and child undergo 1 year of counseling and positive interaction with the Deaf community before they could have their infant/child get CIs

    re: the slippery slope – it has always been tilted in favor of those in power

    we can either aim to lift it up so its a level playing field or we can slant the grade of the slope even more in audism’s favor

    the choice is forever in the parents hands

    u can stand with us – level this playing field – to stand for social justice and equality or u can keep singing “its a Hearing world after all”

    i will stand with u – i will advocate for ur right to choose BUT not if it means ur denying ur child the right to know what it means to be a Deaf ASL person

    then i would be guilty of ushering in a demise of a people and language and as u know – in my book genocides (linguistic, cultural or full out murders) are not cool in me book

    may we all be recorded in the book of life

    peace

    patti

  140. Miss Kat's Mom
    Sep 09, 2010 @ 14:25:34

    1. My daughter still gets pull outs. It remains on her IEP. Not that her private information is any of your business.

    2. We as a family attend a voice-off ASL Deaf church every single week. She continues to she her friends and the Deaf community at a minimum of every Sunday.

    3. I’m done with this. You pretended that you wanted to hear from parents and understand and reasonably discuss implants, but you don’t. You want to tell us why we are wrong.

    How dare you tell me that I didn’t accept my child the way she was? You don’t know me, you don’t know my child. You pretend to come from love, but you come from fear, just like every other anti-CI person. Your concern is not our children, our children are doing beautifully. They are happy and healthy and love signing AND hearing. Your concern is your own place, your community, and what will happen to it if CI are successful. You worry that you will no longer matter and that there will be no future because the need for ASL has nearly disappeared. ASL developed because deaf people could not communicate with the majority through listening, because they could not hear. Deaf schools developed because they needed a place to bring the kids so they could all learn the language together. The Deaf community developed because of the language and culture and the shared experiences of Deaf people. You fear that children with implants will not need those things, not have those experiences, so the future scares you and others who are unwilling to change.

    Anyone who DARES think that I do not love (and yes, if you do not unconditionally accept your child, you do NOT love them) can come and say it to my face. I watched my child struggle to live. I held her in my arms as she lay dying. I picked out her coffin. I asked the doctors if she would ever wake up, so I could see what color her eyes were…they told me no. I faced death, I got on my knees and BEGGED God to save my baby, and I thank him everyday that he did. How DARE you sit behind your screen and pretend to know what is best for MY child. You are no one, I am her mother. I laid with her as she died, I cry with her when she is hurt, I feed and clothe her, I LOVE her. You love only your politics and your fear.

    Now, I am angry.

    You quote Martin Luther King Jr, you sit in judgement, but why do you think you get an opinion? This is none of your buisness. I implanted my daughter because I wanted her to have every tool she could need in life. Yes, we hoped to gain her turning so we could sign, but big freaking deal. If she didn’t, she didn’t. We wouldn’t have torn our flesh and rent our garments, we would have figured out another way, it would have just been really convient to have it back. I believe that I should equip my child with every tool she could need to be successful in life. That includes a visual language AND the ability to hear. You keep asking “Why not give ASL?” Well, right back at you, why NOT give hearing as well?

  141. Miss Kat's Mom
    Sep 09, 2010 @ 14:26:57

    Oh, and parents do spend a year deciding on a CI, most don’t get them until 12 months and are dx’ed at birth.

  142. finlake
    Sep 09, 2010 @ 14:38:38

    Seriously, how can this be executed in a diplomatic way?

    It’s a no-brainer we, the deaf/Deaf, are in a dominant hearing society. So, of course, the hearing parents would long to hear from the medical folks “hey, your kid can hear with them CI — you gotta cough up a couple of bucks here and there. Oh yeah, you can’t use sign, because that would be atrophying the auditory nerve.”

    And it is also a no-brainer the deaf/Deaf has a much better advantage in terms of exploiting the ocular system. Cochlear Implantation? That’s like playing crap, really. Either it’d work or it won’t. Sign Language is a much better chance of the deaf/Deaf to survive.

    g-dammit, the CI industry isn’t very helpful considering with the failure of the CI kids/adults, they wouldn’t even lend ’em a hand and the victims would come to us for assistance to a better quality of life.

    Really, it is a really double edged sword.

    “Can’t we all get along?” — Rodney King

  143. finlake
    Sep 09, 2010 @ 14:47:12

    Uh… I think I stumbled into the wrong place.

  144. K.L.
    Sep 09, 2010 @ 15:47:07

    Patti,
    How do you know I don’t advocate for signing. I agree with you that the little girl should not have been forced to wear her implant. I agree with the deaf mom whose kids were in foster care. They were Deaf and the foster parents wanted them implanted. The mom didn’t. They got implanted. I believe that was wrong. I also believe it is wrong for the doctor to require oral only methodology for his patients, and I have said so on other forums. Just because you did not see it, does not mean I am not advocating for parental rights in both directions. I strongly believe the parents have the right and the requirement to decide the methodology. I also believe that sign language is a benefit.

    Now on to another question. My daughter was reading by age 3. Actual reading. She got all, ALL of her input from voice and Signing Exact English. We chose that sign language so we could fully immerse her in the language we knew fully. We could speak in complete sentences, and add sign as we learned it. It took time, and if we had only had ASL, we would not have been able to give her complete language. She loved her implant, and jumped at the chance to get a second one at age 10. I keep hearing that “coded” English doesn’t work. It sure worked well for our family. Yes, she is now learning ASL. We always intended for her to do that. However, it is for her, not us. At home, we no longer use any sign. She doesn’t need it. I can call her from the upstairs, and she can hear me in the basement or her bedroom, unless she has her music on. That is just like her hearing siblings. Music trumps everything else in the world of sound.

    I also am angry with you over your judgement of me regarding my acceptance of my daughter’s deafness. You are superimposing your beliefs onto my actions. How the hell can you possibly know what was in my heart when I decided to give her an implant? I saw a disease almost kill her in front of my own eyes. She went from a happy healthy 6 month old, to almost dead, literally overnight. Believe me when I say I do not take the threat of meningitis lightly. That disease, nearly killed her. It took her hearing. It gave her siezures. It gave her hydracephalus. She had to have surgery to put a shunt in her BRAIN just to survive. That was true brain surgery. God was with me all the way. Jesus held her for three days while her body fought off the worst of the infection. God told me that the implant was the right answer for her. Yes, God loves diversity. That includes different ways of dealing with the same issue. It is ok to be deaf. It is ok to be Deaf. It is ok to choose ASL. It is also ok to choose an implant.

    Audism is the belief that People who can hear are superior to People who are Deaf. Not just that hearing is better than not hearing. Audism is oppressing People because they don’t hear. Having implants is not audistic. It is simply choosing a different method of dealing with ones deafness.

    I’m done too.

  145. Candy
    Sep 09, 2010 @ 16:00:13

    Patti…

    You said, let’s talk. But, you attacked these mom…did u listen? Or is ur bias for CI taking over?

    I agree with finlake… changes are inevitable. ..

    Care to answwer my question above?

    If u want to ‘talk’ have some compassion. Otherwise, u need to chill.

    Finlake…don’t be afraid.

  146. Dianrez
    Sep 09, 2010 @ 16:04:25

    (Deep breath) There’s always the option of retreating from each other and saying, “well, leave the babies and kids to their parents as it always has been. Parents aren’t inclined to listen to Deaf adults when they really desire to make their children more like Hearing.”

    We will still be called to pick up the loose ends when the children become adults, so we actually aren’t worried about becoming obsolete or redundant. As community members, professionals working with deaf students and young adults, and as parents ourselves, we have already enough to deal with without being concerned for the deaf tots of today’s involved moms as well.

    Since Miss Kat’s mom has pulled out every stop to convince us of the virtues of the CI, and in doing so joins the ranks of Rachel’s mom and a growing number of CI mothers, we have to recognize that these are a tough, convinced and determined bunch of moms who likely will prove themselves right in particular because they are committed and involved parents. (Heaven help us when their kids grow up to be just as tough CI advocates as their moms are. )

    This is a positive aspect I see in the two moms contributing here: even with their convictions they included ASL and maintain contact with other Deaf people in some way. That tells me that they are indeed covering all bases and recognize that this language may still play an important role in their kids’ lives in the future.

    But it won’t eliminate our jobs or our roles in the Deaf community at all. There will be many, many more young people coming out of the CI generation with gaps in their knowledge, skills, self-image, communication and life experiences for us to rehabilitate, for many reasons. A large one will be the expectation that the CI solves all problems and that specialized offerings for d/Deaf children will not be necessary or was found to be necessary at a late age.

    This expectation probably will be held by parents without the education or sophistication that these moms have. According to the bell curve, just 12% of the general population have the analytical skills to gather information, weigh evidence and play the factors of success intelligently. The parents in the middle and lower parts of the bell curve, the average busy parents who depend on others for guidance are the ones who will be influenced by the gung-ho moms and the independently wealthy auditory-oral establishments.

    These moms have a moral burden: to be careful about over-optimism and their convictions and to utilize all possible evidence, both pros and cons, to balance the field. And, bottom line, include ASL as a parallel language.

  147. deafa
    Sep 09, 2010 @ 16:26:21

    MKM, Your reason to implant your child should really be it is what she want, not what you want. Let’s just leave it to that. Like you want her to turn her head. No child like feeling like they are burden their their family because they don’t respond the way they want them to respond.

  148. Jeffrey
    Sep 09, 2010 @ 18:56:47

    Ahh,..now you’re all angry?

    Well,..gee,..Mom’s and Dad’s….get used to it because they’re will always be a cloud of controversy floating over your child because of whatever decision you made. I don’t give a flying phuck if you think what you’re doing is the best thing or how good they respond to the technologies used or whatever et al,..

    They’re still going to have some emotional issues…like it or not.

    You’ve made them a target of a constant praise and ridicule from both sides. A freak show. Ask yourself how many times you’ve had to come to their defense and explain the situation for them.

    You plan on doing that all your life?
    Kids grow up you know? (waving)

    Hearing person: What is that thing on your head?
    Deaf person: Why can’t you communicate with me when we’re both deaf?

    You try to make them normal but in the end you direct them onto an emotional Mr. Toad’s wild ride.

    Now you’re pissed?
    You ain’t seen shit yet, hon.

    But,..do go on,..do seek out more truths and do, of all things, accept that little cloud over poor Eeyore. And,…don’t tell us we don’t know because you know what, we were that child once before. (again waving)

    Grin and bear it, Paddington.

    If you didn’t feel so bad about all of this, you wouldn’t be here in the first place. You wouldn’t be seeking a dialogue with acceptance from the deaf community. You wouldn’t be on the constant defensive. You wouldn’t propagate the lies that were delivered to you and you do this so you won’t be the only victims of their deception. You wouldn’t give a shit because your aim is to immerse them into the hearing world.

    But, alas,…
    That is not the case.
    You ARE here.

    I wonder why….

    Maybe deep and down, you’re hurt and confused.
    So like I said, deal with it because it is just the beginning.

    How is that for being BLUNT?

    P.S. When is your child due for another overhaul?
    Have you accepted that reality?
    beep beep!

  149. Miss Kat's Mom
    Sep 09, 2010 @ 19:24:06

    Just for your information, since I hate untruth, the 2 children who do not receive spoken language benefit (out of the nearly 100 that I know) are both late implanted and in a bi-bi program. They have full access to ASL.

  150. finlake
    Sep 09, 2010 @ 19:30:15

    Untruth? That’s quite a stretch at the truth.

    Every child are different, and does not have a standard uniformity to have the same result every single time.

    Some are successful 100%, some are epic fail 100% and the rest are in the between.

    I take it you’re educated enough to know statistic are not always accurate. There’s always a bias one way or the other. 100 d/Deaf does not reflect the population.

  151. Candy
    Sep 09, 2010 @ 20:45:46

    Jeff, your issues with ur mommy and daddy is urs to deal with. What happen 20 plus years ago isn’t comparable to current situation.

    Patti wanted to talk. MKM and KL didn’t have to participate, but they did out of the goodness of their hearts to share their truths. we either take it as truth or we can be forever distrustful which makes those that want to talk appear to have motives behind really wanting to talk.

    So, Say we screw research…and go by with what we have seen. In my obervation, I have not seen nor heard of any babies implanted (minus those deaf plus babies) struggling where they end up being ‘dumped’ (sorry) in a deaf program. What I am seeing and hearing (from Deaf folks working in school districts that serves deaf hoh kids) is that those that are not doing well where they are not comparable to their hearing peers tend to be kids that were NOT implanted as babies. Looking at what MKM said…I’m hearing the same thing over and over again.

    How about finding out from ur friends, whether the kids in their deaf/hoh schools/programs with CI were implanted as babies or later.

    show me the numbers of kids that was implanted as an infant within the past five years struggling and not doing well comparable to their hearing peers. Bring it on. (no deaf plus)

  152. Jeffrey
    Sep 09, 2010 @ 22:33:17

    I think it is a superb idea to divide and separate deaf and hard of hearing people from each other. I think it is just swell that we subtly aim to keep kids from communicating with each other. I mean, isn’t it great that the children who go through speech and hearing programs can’t communicate with other deaf people who use sign?

    I think it is a fucking good idea!

    I mean, really, we wouldn’t want to lose those kids to the Deaf world. Let’s just keep ’em tethered and spoon-fed with our ideals. Let’s forget about the fact that they are deaf and focus on making them what we hope for them to be. Keep ’em busy.

    Besides, for all our troubles, yours and mine:

    We can’t blame the parents.
    We can’t blame the industry.
    We can’t blame the state.

    So:

    Let’s blame it on our fears.
    Let’s blame it on the Deaf community.
    Let’s blame it on American Sign Language.
    Hell, let’s blame it on the individuals themselves.

    Yea! Those radicals and extremist types are just plain nuts and beyond help!

    I mean, you know what they say about those who fail history,…
    …are DOOMED to repeat it.
    But nevermind that,..
    Chin up.
    Smile on…and continue the bullshit that we’re suppose to maintain.

    20 years from now we will be in the same current shituation.
    20 years from now we will see the same argument.
    20 years from now,…

    I will still be here with my arms crossed, tapping my foot, shaking my head, and wincing at the testimonies of YOUR children. Whether they’re a success or failure matters little. What is most important is that they are not embraced as being complete but as a task that needs extra attention and care in order to be wholly accepted and funkSHUNal by the hearing society.

    P.S. My mommy and daddy are dead because I killed them in a rush of rage and I wouldn’t wish for that on other parents. Pleaded insanity and got 10 years. Now I’m out and about…OoOoOoOo… Nyuk! Nyuk! Nyuk!

  153. deafa
    Sep 09, 2010 @ 22:35:32

    Like all deaf who struggle in the past because of socioeconomic and even neglect, CI children are no different: http://www.physorg.com/news198772934.html

    Again, alot of success in all areas have alot to do with parenting no matter what their languge background is.

  154. deafa
    Sep 09, 2010 @ 22:58:03

    MKM, you know fully well that AVT /oral school usually ask the parents stop coming their program if the child can’t speak, so where they go? bi-bi. If these children have hearing parents and family but is not picking up speech around them at home at all, I guess it goes that CI children need alot of training because they can’t learn naturally on their own like hearing children can.

  155. Candy
    Sep 09, 2010 @ 23:15:00

    @Jeff..

    Looks like you’re in a rage because everyone is” talking” about CI and you don’t see no need to even discuss it? History does repeat itself, however, when you have technology ushering in changes and technology promises more than ever, there ain’t nothing you can do to stop nor roll back the tide.

    It may very well be true that we will be seeing more and more deaf people seeing no need to be a part of the ASL signing community because they fit in with the world at large just like their hearing peers. However, they’re still deaf. And, as long as they’re still deaf, they have the opportunity to be a part of the ASL community down the road if they so choose. Positive image of the ASL community is badly needed. Luckily, there are more parents like MKM and KL who sees the benefit of allowing their child to use ASL in addition to having a CI in spite of the bad images. Yet many more might be scared of raising their kids in ASL when they come across some guy that goes OoOoOoOo Nyuk! Nyuk! Nyuk!

    Seriously, what is wrong with accepting change? Take advantage of the change in ways that you know will benefit the ASL community?

  156. Candy
    Sep 09, 2010 @ 23:17:54

    And, when I said this:

    So, Say we screw research…and go by with what we have seen. In my obervation, I have not seen nor heard of any babies implanted (minus those deaf plus babies) struggling where they end up being ‘dumped’ (sorry) in a deaf program. What I am seeing and hearing (from Deaf folks working in school districts that serves deaf hoh kids) is that those that are not doing well where they are not comparable to their hearing peers tend to be kids that were NOT implanted as babies. Looking at what MKM said…I’m hearing the same thing over and over again.

    How about finding out from ur friends, whether the kids in their deaf/hoh schools/programs with CI were implanted as babies or later.

    show me the numbers of kids that was implanted as an infant within the past five years struggling and not doing well comparable to their hearing peers. Bring it on. (no deaf plus)

    I am actually asking every one who’s reading this to ask any friend or family you know that works in a deaf school or a mainstream school that has a deaf/hoh program with kids that wear CI.

  157. deafa
    Sep 09, 2010 @ 23:24:31

    shrug, there are a few deaf teachers who say more CI children are coming in but they are older.

  158. handeyes
    Sep 10, 2010 @ 00:31:49

    MKM and KL – i do apologize for my words having hurt u so much.

    If you desire a videochat / phone call, let me know.

    ———-

    some other facts re: CIs in children:
    “the investigators found that children in the Medicaid group were four times more likely to suffer complications than privately insured children (19.6 percent vs. 4.9 percent, respectively) and were also more likely to experience major complications (11.8 percent vs. 3.3 percent, respectively).”

    http://health.usnews.com/health-news/family-health/childrens-health/articles/2010/07/20/economic-status-may-affect-kids-hearing-aid-care.html

    caring about all the kids – not just the latest and the greatest and the Deaf minus(?)

    Peace

    Patti

  159. Miss Kat's Mom
    Sep 10, 2010 @ 01:54:28

    We have both actually faced our children dying, the idea that we don’t accept them exactly the way they are, or that we don’t feel for a mother who has lost a child is obscene to us. We have faced more than most, and more than any mother should have to.

  160. Dianrez
    Sep 10, 2010 @ 02:14:23

    I appreciate that you nearly lost the children we were talking about, and that you might feel desperate situations call for desperate measures.

    Does this influence your feelings about implanting them?

    Is not-hearing a desperate situation like the illnesses they went through?

    If not, how do you relate the life crises that your children went through with our discussion here about deafness and surgical treatments? I’m a little confused here.

    We all agree that one child lost is one child too many. In all industries, escpecially the surgical and the automotive industries, a certain number of fatalities are expected directly due to the industry itself.

    I’d submit that not-hearing is a better alternative to one death or a lifetime more severe disability. But that’s theoretical, and doesn’t compare with the touted safety records in both.

    Still, it is worth pondering that non-hearing is considered more serious than even a small risk of surgery-related death or complications.

  161. Jeffrey
    Sep 10, 2010 @ 02:49:23

    Miss Kat’s Mom,…et al,…

    You know,..you’ve seen me around and I’ve been known to spew some crap from the depths of within. That’s a given. I really don’t want parents to feel hurt or ashamed of decisions. I want people to look at us with straight eyes and see us for who we are and why we are.

    You know, unique. Cool. Real. That.
    It is what it is.
    Deaf.

    Pretty cool, huh?

    Now, I know I have said some truly ugly and harsh things in the past. That, too, is a given and I apologize for my harsh and uncomfortable words. However, I feel that they are necessary. These are feelings and they shouldn’t be held back. They should flow so the truth may be and no masks be worn. You might think this is about Me. Jeff. But I’ll tell you this much, I have a big family of friends.

    Whoooey!
    I praise you for using ASL with Kat and that is a blessing.

    ASL is a language that needs no batteries or appointments. It is , oh yes, fundamental even when we believe sound prevails because the child responds to it. Reception to sound. Responsive. Attentive. Mimics well, thus is aware of sounds and intonations. Sure, it is all there. It works. I’ll give you that.

    Been there.
    Done it.

    What most people fail to realize is the fact that the procedures involved already make them different from the mainstream society. The surgeries. The questions. The rejection. The difference. The testing. The comparison to hearing people!

    As if we were less than them from the beginning.

    All of that does a lot to a person. Does a lot to their thinking. Does a lot to their identity. Does a lot to their state of being. You can deny all you want but if none of this was true then why am I not the only one talking about THIS. Right here. The things we are passionate about because we fucking CARE. About you and your kids. About your relationship. AM I STUPID FOR CARING ABOUT OTHERS?

    I should hope not.

    I believe the root of the problem is something right before us. Something we can reach, if willing, to understand why a people who do not hear in a world that does, are so upset and frustrated. Perhaps it is because we are not accepted as being visual communicators first and foremost.

    You know,…
    Oftentimes it sure feels like people think:
    Hearing isn’t everything, it’s the only thing.

    I reckon we tire of that shit.
    That attitude.
    Finish!
    Ya Mind?

    Again, I praise anyone who uses ASL alongside any method or means. It is a lifesaver for the soul of you and your child’s relationship. It is reliable and requires no money or technology. Just love. Believe me, listening and lipreading become really tiring. You see, ASL is a beautiful remedy to such a frustrating task.

    You can still use the implant and the hearing aids, but please, I beg you….please don’t place ASL on the back burner. Use it all! When you, do, you see why we say it is so important.

    All in all,…
    I’m just a fool who lives in the desert and howls at the moon.

  162. Ann_C
    Sep 10, 2010 @ 06:24:33

    Oh boy, dunno if this is something I wanna get into.

    I respect that parents, hearing or deaf, have the right to decide for their deaf child. I begin to understand K.L.’s and MKM’s dilemma in dealing with a life-or-death matter and wanting the best for their deaf children once their children survived their ordeals. I wouldn’t wish that on any soul.

    I also understand where Jeff is coming from: this constant testing in the hearing booth can make a deaf child, regardless of whether he/she implements HA’s or CI’s, or not at all, and uses full spoken English or a mix of ASL/ English, whatever, STILL feel like he/ she doesn’t quite match up to hearing standards. The testing is incessant. I know, been there, done that. It invariably leaves a huge impression on a child– “I’m not good (hearing) enough, why else this constant testing?”

    Now, mind you, I’m oral deaf and my primary language is spoken English, not ASL. Nevertheless, I know damn well I’m deaf, not hearing. I don’t think there’s anything wrong with being deaf and using hearing assistance, if one grew up with that, fine, or if one wants to hear, fine. Just don’t call me a deaf person who hears, because that ain’t the truth. I hear in most situations well enough, but I would never define myself as a h-EARing person. I believe, after the numerous hearing booth tests and CI mappings, a child is gonna know he ain’t a h-EARing person. He/she is constantly being tested– not just in the hearing booth or at the CI mapping sessions, but also in the classroom, at the family dinner table, in many speech interactions with others, and the stress is at an all-time high for a small child. Been there, done that.

    What I see are unusually high parental expectations and where is the child in all this?

  163. Dianrez
    Sep 10, 2010 @ 07:40:48

    Ann C and Jeff have hit upon something indefinable and at the soul of every d/Deaf person. We are different despite everything our parents did for us and wished for us, yet it isn’t a bad or undesirable thing in itself. It is part of our core. Our sense of self. Our values. Our sensitivity.

    And hard to describe. It doesn’t limit us, but its something we’ve seen our parents crying about. It’s something we’ve seen in the looks other people give us at times. It’s something our kids’ classmates tease them about. It is the elephant in the room at family reunions where one is the only deaf person present.

    Yet…it is also there when one attends a Deaf gathering. I was just at a huge bash recently given to celebrate the 50th wedding anniversary of a couple dear to many of us. Maybe two hundred of the Rochester community were there…all gray and wrinkled, some battle-scarred, some well-off, some hearing, some HOH, some Deaf and some deaf. Some with CI’s and hearing aids.

    The party was hosted by the couple’s two adult sons, themselves balding and in their late forties. One was progressively deaf and had gone through hearing aids until he finally sported a CI. The other was Hearing all his life. They were married to hearing girls. Their feted parents are respectively HOH and progressively Deaf and used ASL as their preferred language.

    Most of us were students at the Rochester School for the Deaf or had a spouse or relative there at one time. Most of us had grown up in the same community but had divergent lives of varying interaction levels with Hearing people. Just about everybody had a story at least four decades old about somebody else there.

    Of course there were interpreters, two of them. Middle-aged, one CODA, one learned ASL late, both very involved in the Deaf community for years. I was chatting with one of them, as we had first met when she was an interpreter for my work meetings for the past ten or twelve years. Catching up, like with others. “This is so impressive,” she said, “it’s just like a huge family reunion!” We talked about why this is so, even though only a handful of the guests were related to the happy couple by blood or marriage. Not all used ASL. “The room is so quiet!” It was a huge party hall, but there was no piped-in music or band. “The only noise is coming from over there in the back, where most of the hearing people are!” It was true, the hearing people had retreated to a zone of comfort, creating a buzz and talking over one another as hands flew around them.

    Cultural differences, and they were in the minority, perhaps about a dozen or so of them. “Listening to them, they sound like old fuddy duddys.” I became interested and asked why. “They keep talking about teaching methods and who does not use sign language and how much better things were going when so and so got a new hearing aid.”

    Gee, how sad. Some Hearing people are constitutionally unable to get it. For them it’s all about hearing. For most of the others, it’s about fellowship of a very rich kind.

  164. finlake
    Sep 10, 2010 @ 14:34:11

    Hmm, Dianrez’ comment has hit a memory of my memory bank.

    I grew up in a regional day school for the deaf for a big city, as well as mainstream programme during middle school. When the high school years rolled in, I went to almost exclusively hearing school because the local programme school for the deaf couldn’t meet up to the par of my learning curve. My teachers decided to sent me to an exclusive hearing school for my learning advancement. But I still felt alienated socially.

    With that in mind, I was accustomed to the background noise/buzz of hearing world. By the time I entered my junior year, I enroll into an exclusive deaf school and I was taken back by how quiet it was, audio-wise. I decided to toss out my hearing aids, and boy, it was much “louder” in my eyes as I could see how it was truly in terms of ocular stimulation. And socially, my social skills went through the roof. I got to learn the necessary skills in life at the school for the deaf and I could -NEVER- get from classroom environment in mainstream environment, like romance, courting, peer-to-peer hanging out, sports, football, and the likes. The problem I had at the mainstream environment was I’m always “that kid who rode in the short bus” with my hearing friends/acquaintance/classmate and they don’t want to be associated with me. Gah, it ain’t easy being deaf in the hearing world, I tell you. It does not matter whether I had hearing aids/C.I. or not as well as the mad skillz of hearing/speaking well, because I am still d/Deaf regardless.

    Anyways, it was always loud in -both- world when I was growing up.

    Ann C. has hit the spot — it really sucks to know I am able to hear/speak well, but still _not_ up to the standard of hearing world, i.e. those g-d damn speech therapy as well as the hearing test. Sometimes I would be so aggravated by being “forced” to go the hearing test when I wanted to do after school activities with the “normal” kids. So what I did, I would intentionally throw the audiologists off by raising my hand at random interval when they try to do testing on certain frequency. muwa hahahahaha

    Point being, I may not be a C.I. user but it parallels a lot to me being a hearing aids user. It’s basically the same thing.

    To be frank, the hearing parents are most likely to have well-meant intentions for the betterment for their d/Deaf child, it will NEVER be enough to meet the expectation of being “hearing.” It ain’t easy, believe me.

  165. K.L.
    Sep 10, 2010 @ 16:07:35

    I appreciate the explainations and apologies. That helped. Unfortunately, I keep seeing the same questions. You say I don’t get it. Maybe I don’t, but you don’t either.

    Dianrez, I was upset because Patti said basically that we don’t love our children unconditionally, or else we never would have implanted them. Excuse me. There is no correlation there. You may never accept why we go through this, and I am tired of repeating myself. But I know a lot of parents who have chosen the implant for their kids, and not one of them did it because they thought their child wasn’t good enough as they are. It is very arrogant to put your motivations on my actions, as Patti did.

    My daughter loves her speech therapist, and looks forward to going. She also loves her audiologist and looks forward to those semi annual appointments. Of course, she sees it as tweaking her map, which it is, so there is nothing personal in the sound booth for her. Family get-togethers are no problem. If she did not have the implant, yes, she would have been very isolated. We already knew that most of the family would not step up and learn sign language. This is not the reason we gave her the implants, but it is a side benefit. There is no estraingement. She is fully involved with all family events.

    I really feel that many Deaf don’t want to accept how well the implant truly does work for those implanted early. I know there are limitations, but they are much tinier than with hearing aids. She gets all the speech range, and fully hears conversation. It truly is as if she is a hearing deaf person. Her speech comprehension WITH noise is within 5% of normal hearing response.

    I know she is deaf, which is why, for mostly social reasons, I feel it is important for her to have and maintain a relationship with the Deaf Community. I feel it is important for her self esteem. I would not deny her that. But I feel that as the only deaf child in a very large extended hearing family, the potential for her growing up lonely and isolated was huge. I felt it would be more damaging for her self esteem to grow up ASL only, than to have the implant and the ability to communicate verbally. I also felt that since the majority of the world is hearing, that things would be easier for her, as an adult if she also had the ability to hear.

    Please do not tell me that her world would be all smiles and roses if only we had chosen ASL only. I see the pain many Deaf have gone through growing up in hearing families. Even when they had ASL, things were not easy. I have done my best to give her both ASL and hearing. I stand by my decision that it was best for her. She loved her implant right from the start, even the first day she got it. I saw the withdrawl and lack of eye contact she had after she lost her hearing. I saw the confusion on her face. And I saw her face light up when sound was reintroduced to her. And the biggest reason I felt confident that this was the right decision, was when God answered my prayer, saying this was the right decision for my daughter. How can you tell me God was wrong?

    I cannot be any clearer than that. I have shared enough of myself here. Take care, everyone.

  166. deafa
    Sep 10, 2010 @ 16:31:23

    You know what, I learned from my deafness who are my real friends, even in my own family, because i learned that if I am not hearing enough, they will treat me inferior. They make me sleep on the floor and think I don’t mind because I can’t hear while my sister got to sleep next to our cousin or friends. I talked to my sister about this recently, and all she say was I’m sorry it like that because you couldn’t communicate (or something like that). It is as if she understood and accepted my cousin more.

    Or assign me to dining room seats with people who don’t talk much or talk boring things (like gambling) instead of sitting with the girls in the kitchen. This doesn’t mean I won’t sit with these people, It just mean why can’t THEY sit with them. Remember I grew up as an oral deaf. You get to see the ugly side of a person when you are deaf. We should not even be catering to these people to what they want as communication. Again, I would not use the “so she can communicate with her family because they won’t learn ASL ” excuse. Sorry.

  167. K.L.
    Sep 10, 2010 @ 17:12:35

    Did you not read what I wrote. I specifically said that this was NOT the reason we gave her the implant. I said it was a side benefit. I see that it pushed your buttons, but please see that I didn’t choose to give her the implant to appease others, or to help her “fit in”. I’m sorry it hurt you growing up. But you do make my point that being Deaf in a hearing family can be isolating. Your family did make it worse by not sticking up for you. But she is not going through that pain. Her childhood won’t have those memories.

  168. candy
    Sep 10, 2010 @ 17:22:44

    deafa…

    I’m seeing you using your experience to justify your views. Your experience is NOTHING like those that were implanted as infants. Plus, every family is different. There are parents who are not dedicated like MKM or KL. It’s ok to tell your side of the story, but don’t use it as a benchmark for all the kids. What happened to you does not mean it will happen to others. There are many adults who got implants and the results varies based on many, many factors. Why did you get the implant? What did you expect from your implant? Did getting the implant meet your expectation?

    I do ask myself why I want it and what do I expect from it and all that. My reasoning for wanting it has to do with my desisre to hear more sounds and to be able to benefit from and enjoy the sounds I am missing. Additionally, my comprehension of words is dropping a bit, I have the desire to maintain what I have always been able to do or better. I don’t have high expectations from it and I am prepared for it not to work at all for me. I still have my better ear that allows me to use the phone and allows me to function in the world without using ASL. Will I use my experience to assume that what works for me will work for others? No way. What’s yours, deafa?

    So far no one is able to come out and tell me what are the average age of deaf kids being implanted that are currently in a school setting that focuses on ASL and that they are there because the implants did not provide them the ability to be able to function in a regular school setting. So far, no one is saying anything which concludes in my mind that they KNOW that deaf kids who are implanted early have better chances of functioning in the world at large without the need to know ASL.

  169. Ann_C
    Sep 10, 2010 @ 17:35:59

    “They keep talking about teaching methods and who does not use sign language and how much better things were going when so and so got a new hearing aid.”

    I can vouch that hearing ppl say things like that about oral deaf folks too. Another one is “Why doesn’t she get a CI?” as though they think every deaf person would either qualify for such or want to. They just can’t imagine NOT wanting to hear or to hear “better”. Ass-umptions galore, duh.

    I’m off topic.

    Anyway, I appreciate learning about K.L.’s and MKM’s views. I’m not here to criticize or question their decisions for their deaf children. Such decisions are personal in nature and difficult to make, even after weighing the pros and cons of each communication/ language option. Parents usually know that what they decide for a very young child is going to impact the way the child will live his/her life and how that child will communicate with others.

    It is just that I hope the parents are mindful of situations that can induce stress in the child. There is that subtle pressure to be “hearing and speaking” even though the child may enjoy her speech therapy or AVT and her audiological appointments. It is still work to wrap one’s brain around words and pronounce them correctly. It’s not the same experience as a hearing child picking up language on the fly from parents/ family. An oral deaf child knows the difference.

  170. Dianrez
    Sep 10, 2010 @ 17:58:44

    I’ve appreciated hearing other views, too, but get bothered when it sounds as if they are proclaiming it as a discovery that they have to tell others about “to benefit others too.” Adding their voices to the already hyper-optimistic siren calls of the industry.

    There has to be a limit, please.

    A dose of reality.

    Not misinforming the general public who gets the message that it’s an answer and wonder “why doesn’t so and so get a cochlear implant?” Some examples:

    Employer: “I’ll choose the one with the cochlear implant over the one who doesn’t, even if the other one has the better qualifications.”

    Parent: “He doesn’t hear so good. I want the cochlear implant even if he is hard of hearing because I want him to have full hearing.”

    Other citizen: “What a pity…maybe he can’t afford the cochlear implant.”

    Annoyed service desk clerk: (muttering) “These people shouldn’t even be here if they don’t want to get cochlear implants and make it harder for me to talk to them.”

    Implant industry supporter: “Those Deaf Extremists don’t want kids to become hearing and not need hands talking. They’re afraid they will get lonely without other deaf people to keep them feeling like a community.”

    Stupid? Yep. Exaggerated? Likely. Or so we hope. Just some more reasons why people shouldn’t overexaggerate the benefits of the CI or enthusiastically imply that it works for most people.

  171. deafa
    Sep 10, 2010 @ 18:13:22

    <> I’m assuming you are trying to say CI will fix the problem, if so, to me it is more of a “if you can’t fight them, join them” attitude. Isolating is not a problem, I can understand them just fine in one in one conversation. It’s audism I’m fighting against. Audism always give deaf children bad memories.

    Candy, the reason I got my implant was a long time ago, back in 2003. I was a hearing aids user and I got it because the technology was out there, plus, I don’t know sign language so I depend heavily speechreading, which mean if my ears got worst, my communication would be cut off because I can’t lipread without some kind of sound cues. I was one of those people who view deafness from a medical perspective or disability. Everything I do, I feel like it is a price to pay for being deaf (a disability view).

    Don’t get me wrong, there is nothing wrong being hearing and enjoying sounds. But one should not think badly about being deaf or ASL either.

  172. deafa
    Sep 10, 2010 @ 18:38:38

    another thing, Think about it, what if your daughter was born in my generation, would you really put up with that crap and say “well, it is the price to pay for being deaf”

  173. Joseph Pietro Riolo
    Sep 10, 2010 @ 19:43:37

    To K.L.,

    I would never claim to speak for the Almighty but I would like to answer your last question. I am familiar with two positions relating to the Almighty. One position is that the Almighty gives a child and that we should leave it as intact as possible. In other words, any alterations to the child seem not acceptable to the Almighty. Second position is that the Almighty gave us the signed languages that we could use to communicate with the deaf babies and children and these should be sufficient.

    However, there is a third position. The third position is that the Almighty gives us the knowledge to make new technologies. Some of these new technologies are TTY, closed-captioning, computers and videophone. Also, some of them are hearing aids (analog and digital), FM system, many assistive listening devices and finally, cochlear implant. It is not hard to see how this third position could answer your last question. No one could tell you that the Almighty was wrong in giving you the technology of cochlear implant for your child.

    May you be blessed with the wisdom in raising your child.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

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

  174. K.L.
    Sep 10, 2010 @ 21:49:46

    Joseph. Amen.

  175. Shel
    Sep 11, 2010 @ 00:39:55

    Folks, I’m jumping in quite late here, despite having not been able to read many comments…

    KL’s comment really struck me… and came off as offensive even though I know it’s unintentional on her part.

    “I felt it would be more damaging for her self esteem to grow up ASL only, than to have the implant and the ability to communicate verbally. I also felt that since the majority of the world is hearing, that things would be easier for her, as an adult if she also had the ability to hear.”

    Excuse me… I need to point out something. NO DEAF CHILD HAS GROWN UP WITH ASL ONLY. THAT IS A MYTH Each Deaf child, regardless of the decibel level as measured on audiograms, is REQUIRED BY LAW to learn English…at least in North America, both USA and Canada. ALL Deaf children have had to learn English through whatever strategies, methods, or modes foisted upon them by the educational system which is heavily dependent on the model, prescriptive model rather than the cultural model.

    You see before you… a Deaf adult who grew up with “ASL only”. Last I checked, my self esteem is pretty intact, thank you very much. I know of MANY Deaf children and adults who grew up BILINGUAL ( again, there’s no such a thing as ASL ONLY). So far, self esteem has not been an esteem.

    My mother told me that she had to buck the audist system… yes, audist… who repeatedly told her that I had to fit in with society. She is a strongwilled lady, who had me at such a young age… 20! She could easily have caved in and gone the oral method, but she didn’t! I remember her telling me when I was 20 years old that when she was at that old crossroads (oral or manual)… “I decided to raise you normal and sign”. THAT was profound and still resonates with me even now.

    Another thing, when the CI prototype came up in the 80’s, Mom faced enormous pressure to implant me. She was told that I was smart and would benefit from the CI. She resisted and told them that the decision was mine solely, and not hers. I recall her asking me only ONCE when I was approximately 11 or so if I wanted a CI. I had no idea what that was. Once that was explained to me, I said (and I quote Mom), “Why? I am fine the way I am. I don’t need to hear.” That was the end of that. Never again did she raise that subject. I completely forgot about that conversation until last year.

    As for God being wrong… NO He doesn’t make mistakes.

    I was born Deaf and Mom told me that God made me that way for a reason, and she saw that as a gift.

    DEAF….A gift horse that Hearing society look in the mouth and curse and try to modify into what they want. In that, once COULD argue that the CI industry, the audiologist and surgeons are all playing God and second-guessing him.

    Small wonder the world is so screwed up… what with tinkering with what God has wondrously and fearfully created in so many ways, INCLUDING the Deaf people!

    I will comment on the “majority of the world is hearing” part in the next comment.

  176. Shel
    Sep 11, 2010 @ 00:41:30

    Continued from last comment…

    It’s a man’s world, after all. This has been said to women who dared challenge male-dominated bastions of business, government, and elsewhere.. Women were told to remember their place in society. Today, women are in positions of power in different areas of society.

    It’s a White man’s world. Said to Aboriginals, African-American and other non-WASP upstarts who were reminded to stay in their place. Civil Rights Movement happened in USA. Canadian aboriginals got an apology from our Prime Minister. We got First Nations people in government. We have Minister of Health Leona Aglukkaq (First Inuk from the Northwest Territories and Nunavut to obtain such august position)

    It’s a Straight world. Said to the Gay people who were once told they suffered from mental deviancy. We got gay politicians in both USA and Canadian governments.

    Once, members from each minority group had to “pass” in order to succeed.

    For the African Americans, it was the “high yellow” folk who made it in the White man’s world.
    For the Native Americans, they had to conform to white values (at the expense of their own cultural values) to make it in the White Man’s world. .
    Women once had to submerge their feminity to make it in the man’s world.

    Gay people have had to remain in the closet to make it in the Straight world, though more and more are coming out.

    NOW you tell us Deaf that it’s a Hearing world, and we have to conform, and lose our Deaf nature and be surgically altered so we can hear to make it? It’d make our lives easier?

    Has conforming to WASP man’s world make the lives of women, nonwhite folk, Gays easier ? At what cost to their identities, souls? Has history shown that it is better to adhere to the values imposed upon others by the group in power? Nope.

    Quite the opposite, in fact. ALL the aforementioned groups REBELLED.

    Women’s suffrage movements were born in both USA and Canada. “Extremists” like Susan B. Anthony and Nellie McClung respectively led those movements.

    Martin Luther King Jr. (arguably an extremist) led the Civil Rights Movement, along with the more “extremist” Malcolm X.

    First Nations people also revolted. Lawsuits ensued. MPP Elijah Harper singlehandedly killed the Meech Lake Accord in Canada and damaged the image of Prime Minister Brian Mulroney with a single eagle’s feather.

    The First Nations People also won an apology from our Prime Minister.

    The Gay people in Canada won legal protection against discrimination in the Canadian Charter of Rights and Freedoms and Ontario Human Rights Code. Bill C-250 accorded Gays the same legal rights as straight people.

    NOW you’re telling us, the Deaf, that it’s a Hearing world and we MUST conform? We must hear in order to make our lives better?
    Right now, we are rebelling against that. PROOF?
    Deaf President Now Movement.
    Gallaudet Unity protests
    Vancouver ICED 2010 repudiation of the Milan 1880 Resolution and the authoring of the New Era Document calling upon all nations and educational systems to respect all sign languages of the world and to involve the Deaf in every level of decision making especially when it affects the Deaf.
    Most recently: AB2072.

    WE ARE STILL BEING TOLD TO REMAIN IN OUR PLACE AND ACCEPT MODIFICATIONS BECAUSE IT’S A HEARING WORLD LEST OUR SELF ESTEEM SUFFER?!

  177. finlake
    Sep 11, 2010 @ 01:08:10

    -rim shot- Hear, hear to Shel. (no puns intended)

  178. Trackback: ASL-Only Myth Debunking Time! :Shel: A Deaf Canadian's Thoughts
  179. Dianrez
    Sep 11, 2010 @ 01:37:45

    Wow, Shel, I completely overlooked KL’s statement that “I felt it would be more damaging for her self esteem to grow up ASL only, than to have the implant and the ability to communicate verbally.”

    I’m sure KL unintentionally picked an unfortunate phrase that ignorant hearing people use. She meant she didn’t want her child to be taught only ASL, English and speech, she wanted her child to ALSO be taught speech using CI-enhanced hearing.

    “ASL only” is a misconception that the oral-aural industries have been drumming on for decades. There is no “ASL only” method of instruction. All deaf children, both in oral and in combined systems, are also taught English in one or all its forms: spoken, written and read, and in the classroom, signed in the fashion mandated by the school.

    Speech is not the same thing as English. (One might equally illogically talk about schools that offer only speech with the alternative being schools that offer only English.)

    Now, for the child’s self-esteem being damaged by not having CI-enhanced :

    By whose standards? Her family’s? Her peer group’s? The hearing society at large?

    Here we are entering a different world of contention: measuring ourselves by external things. That should never, ever, be taught to children–that they have to measure up to others and allow their self-esteem be determined by that.

  180. Trackback: It’s a Hearing World, After All… :Shel: A Deaf Canadian's Thoughts
  181. Shel
    Sep 11, 2010 @ 02:40:39

    Precisely, Dianrez.

    I know it was unintentional on KL’s part. Still, you’re correct, Dianrez.
    We Deaf, both children and adults are being measured by society’s standards and interpretation of what is normal.
    Normalcy is such a subjective term, and ought to be done away with. Ask 10 people of various background what normal is, and you’d get 10 different answers.

    Sigh. No child, Hearing or Deaf, of ANY ethnicity or language background SHOULD have to be taught of the need to measure up with others. Yet, each child is taught that in various ways.

    What is the ideal human being? That’s so subjective, too. I fear I digress, but this still ties in with the idea that CIs are necessary to “help” Deaf children fit in the “Hearing world.” That is definitely audism, intentional or not. Conscious or not.

  182. finlake
    Sep 11, 2010 @ 02:51:41

    The bottom line? To be a human being is to be part of a frakked up species on the par to cockroaches which multiplies a thousandfold on a very limited resources planet which happens to be one speck of the entire board which is hostile to the homo sapiens… however, that’s another subject.

    Carry on to the core of the subject.

    Well, that’s the very root of the problem — we, the society of the entire planet, as in the majority are actually behaving incredibly similar to the horrific Spartan society. We’re expecting a perfection of ourselves. Deaf? Daft! C.P.? Cripple! and so forth. So… now we’re questioning what is normal?

    A doctor once told a dear Deaf friend of mine ages ago. His son was born deaf. The doctor said “Your son is not normal. He’s deaf.” The friend said “Oh? Are you telling me I’m not normal?” “Oh no, that’s not what I meant.” -wince-

  183. Miss Kat's Mom
    Sep 11, 2010 @ 04:32:02

    She meant that she thought it would be MORE damaging being left out of EVERY family event, gathering and celebration because no one in the extended family can communicate with her. I have heard from SO MANY Deaf people that they are left out and isolated because their family doesn’t use ASL. Why is that better than being able to communicate easily with her family (and the other 99% of the world)?

    As for the stupid “changing what God made” arguement…I hope that you do not eat processed food, take ANY medication, or allow ANY medical procedure that could save or enhance you life. If God wanted you to die, you better just die!

  184. finlake
    Sep 11, 2010 @ 05:07:48

    Hmm… now God has been brought into this argumentation. Ok, lemme play a role of the devil’s advocate. From what I know of, I am not allowed to donate -MY- (or was that God-given) semen to the sperm bank solely based on the fact I do possess a “potentional” hereditary trait of hearing impediment. Now, I wonder who’s playing god … no wait, was that God-given?

  185. Miss Kat's Mom
    Sep 11, 2010 @ 06:03:32

    Actually, unless you are a Ph. D., over 6 feet tall, and have an IQ of over 140, you probably wouldn’t be accepted deaf or not.

  186. Ann_C
    Sep 11, 2010 @ 06:29:36

    “…unless you are a Ph. D., over 6 feet tall, and have an IQ of over 140”

    Lol, MKM.

    You’ve just defined “perfection”. MU-WUA-HA-HA-Ha-ha.

  187. finlake
    Sep 11, 2010 @ 07:05:16

    Now, that’s playing god.

  188. Karen Mayes
    Sep 11, 2010 @ 12:43:15

    Oh boy.

    Hm. I know in my heart that we’d be facing science and medical advancements in the hearing loss area and sooner or later, stem cells will be common and genetic engineering also. That would be a big thing in my children’s time.

    May I say one thing? Shel is right… there’s no such thing as ASL-only education, even though I have met a FEW people who advocated for it (and they hated me ~wink~ ) Hmmm…I hate to say this, but Dianrez, finlake, Ann_C, Shel, to name a few raised valid points. I am a bilingual Deaf person, fluent in ASL and comfortable with writing in English (no, I am not that good with Spoken English; I have the monotone voice that is common with born-Deaf people.) My experiences with both hearing and Deaf communities have been very enlightening for me. Yes, my son has a CI, only at his request (last year) and yet he goes to the Deaf school… no, no, no. it’s not a “dumping” ground for him as a kid with CI 🙂 As I have stated in the last few years, I always wanted and still want to see the Deaf schools evolve to meet the needs of the Deaf children with CIs instead of losing them to the hearing world. Meaning, that the Deaf schools need to set up partnerships with the hearing schools, etc., instead of being insular.

    Even the children with CIs will always know that they are Deaf. They will grow up with hearing both positives and negatives about the Deaf Culture. Unfortunately, negatives tend to outweigh the positives. So, ironically, the tone of the negatives would be more attractive or more repulsive, depending on the Deaf child’s curiosity.

    Future… ~shrug~ We will deal with it when it arrives, as we always have… hearing and deaf people, separate and yet united.

    🙂

  189. Shel
    Sep 11, 2010 @ 12:54:38

    Heh, MKM!

    Ok… add to the requirements you listed, the man should look like Brad Pitt especially in the movie about the Trojan War… mmm! Sorry, Finlake. Heh. Thanks for the laugh.

    Back to the topic….

    I come from a family of hearing people, and yes, being left out of family event, gathering and celebration is part of it, BUT it didn’t mean that no one in my family communicated with me. I chatted with most members of my extended family by paper and pen from the day I was able to pen anything. I got to see various examples of English from grassroots level to PH.D level. (My father came from a family of 12 children and I sat down with most of them) On my mother’s side, both her brothers and sisters-in-law signed with me. Grandma and I wrote back and forth all the time.

    I was always included in family games like Trivia Pursuit, Charades and Super Quiz etc, and was always first chosen as team member because my team often whupped the poor opposing team’s derriere.

    Get this, MKM. NO ONE ever tried to correct my English. I got to see various models of English in print. In fact, I was told I corrected the spelling of an adult family friend when I was 4 years old. All of this without the benefit of a cochlear implant, or oral training.

    Many Deaf shared experiences of constantly having their speech or English writing skills, or both, criticized to the point where they became frustrated with the English language. This criticism came from members of own families and in the classroom!

    Deaf children are constantly reminded that they must measure up to the Hearing people in terms of speech and English skills. I found out as a teen that MANY Hearing people have poor English writing skills and spoken English grammar. Yet, we are constantly beaten over the head with that mythical grade 4 education level upon graduation! (Look to some states in the USA where HEARING students have been said to graduate with Grade 5 education! NO ONE said anything about that.) Yet, we are being told that cochlear implants will help improve our education?! With our literacy in English?!

    A little lopsided, if you ask me. That is the problem with the xenophobic monolingual American education system!

  190. Karen Mayes
    Sep 11, 2010 @ 13:35:18

    Yup, Shel. I have always said and still say… that we are not different from hearing people when it comes to reading levels. I guess due to the smaller population, we get more attention and more “attempts” to “fix” the Deaf education system. That’s my observation… nothing more.

  191. handeyes
    Sep 11, 2010 @ 13:47:43

    Perhaps a discussion of common ground is in order right about now?

    shall we?

    dare we try to strike out for the path of equality together?

    may we… perhaps dance in sync instead of in opposition?

    lets give it a whirl

    we hold these truth to be self-evident – that all folks are created equal and endowed by their creator with certain inalienable rights – the right to life, liberty and pursuit of happiness

    seems the founding fathers (with a bit of help from their mothers and wives, gal pals, and sisters – see Abigail adams) – knew we all are equal and that we have been given
    FREE WILL

    most major religions will acknowledge G-d’s tricky / slicky gift of Free Will

    now we know folks can hold principles that are grand and beautiful – like the above “all folks created equal” and turn around and do some pretty dang bonky and contradictory things – like forming a brand new constitution and nation that is pretty innovative, progressive, democratic and grand BUT also build into that constitution the most shameful, disgraceful, hypocritical, and sinful practice known to mankind…

    i speak of slavery

    see https://handeyes.wordpress.com/2010/07/04/514/

    me point – we may aim for the sun but sometimes not quite make it in our quest for equality but every bit, every push, every effort, every shout out, every really HARD and UPSETTING conversation, brings us a bit closer

    so i thank each and everyone of u here who has been brave enuf to comment

    it does take courage and sometimes foolishness or fool heartedness

    there is MUCH here that tells us much

    so i thank u muchly

    there is also much that isn’t here that tells us much – there are still some grey areas we have not wagered into, there are still some thorny places we have not ventured near, there are still some itchy places we have not scratched, some truths we still have not sung (“I too sing America”)

    and at times we have not fully listened nor heard nor seen what it is the other person is saying or what we ourselves are saying but…

    we indeed have been talking and typing and again I thank u

    so back to the common ground

    – i hope we can all agree that all folks are made equal even when their status changes – they change gender, or they become Deaf or they become a mom or they loose their job, or they get divorced, or they become an alcoholic or they get sober or they win the nobel peace prize, or they are a garbage collector, or they are a child climbing a tree as high as she can muster

    we all be created equal even when equality will not be given to us – we r still equal

    agreed?

    – equal does not mean same

    agreed?

    – children who have parents who invest in their language, educational, emotional, social and cultural development generally do well

    agreed?

    – children who love to read always have a friend

    agreed?

    – ASL is a beautiful language

    agreed?

    – Being bi (or multilingual) is better than being monolingual

    agreed?

    – it is good to be Deaf

    agreed?

    – it’s a big ole beautiful world out there?

    agreed?

    also to all of u who have been participating in this dialogue in addition to thanking u for being here i want u to know that i am truly “all eyes” – i am really searching and seeing what is written and what is between the lines.

    i also want all the MANY MANY visitors who have also been stopping by to read – “i see u also” and i thank u for having come to bear witness

    Peace,

    Patti

  192. Dianrez
    Sep 11, 2010 @ 13:57:19

    Seems to me that the controversy over the CI is beside the point. After all, we would all agree that if our child were born with a clubfoot or cleft palate, we would have that fixed. Right? The CI is different in that it bridges, or divides, one community from another, (unlike the clubfoot surgery) the way we have structured society in general.

    The CI was devised to bring one toward normal hearing, and has so many hopes attached that actually are met in only some cases–the rest being highly variable. It is unusual in that only the older recipients can truly tell how effective it is…with the clubfoot it is immediately obvious. With the CI it is EVERYBODY ELSE that is judging its effectiveness by secondhand information. Based on their own personal experience and their own standards. If not met adequately, those standards are often inadverdently used against the CI recipients anyway.

    The d/Deaf respondents on this listserv have tried to touch upon audism in the CI. Arguments for implanting the child such as improving family connections, access to English, interaction with the Hearing community, using technology not playing God, etc. are reasonable and irrefutable.

    But, but, parents still don’t recognize the audism in it. Even with all the reasonable arguments, it’s still using hearing as a standard to measure the child against. In every test and evaluation and mapping experience, the child is tested against this standard. The child is reminded again and again in the community that he falls short of this standard.

    Now, this is not an argument against the CI. It’s a reminder that the whole system–the industries, the professionals, the educational system, the rehabilitation system, etc–is driven by audism, manifested as a drive to bring the child up to a standard. How can it be otherwise? Rule of the majority. In other words, it is what it is.

    If we just regarded deafness as a human trait like freckles or lefthandedness…even with enhancements and gadgets and ointments, still just a trait. Like in Marthas Vineyard where deaf people were as commonplace as red-haired people. No one thought anything of it, as everyone considered it normal. There was a deaf leader. There were deaf business owners. One even became wealthy. No obsessing or crying or controversy. Maybe one day we can all get over this totally ridiculous “hearing is the be all and end all” and take deafness out of the realm of disability.

    Not getting it yet? It’s a cultural thing more than a disability. Deaf people are achieving the same things as hearing people and to keep insisting that they need to hear to do so is a profound insult that their ears are worth more than grey matter. That we are laboring under disadvantage is a result of the hearing society’s attitudes and habits, not the lack of hearing itself.

    Me not getting it? Oh, I get it. I have to HEAR to succeed, communicate, etc. in YOUR community. No bones about it. The majority rules. Unlike Marthas Vineyard, our majority does not feel the need to absorb our deaf minority unless they meet the standards set by the majority.

    So, parents, I don’t mean to impose the guilt of a community’s failings upon you and don’t blame you for anxiously running to the CI to make your children fit in. But, please, keep it in perspective. The ears aren’t the most important thing the kids will need in their lives. It’s the quality of what sits just above them.

  193. deafa
    Sep 11, 2010 @ 15:01:22

    BTW, it isn’t a hearing world. We live here too.

  194. Miss Kat's Mom
    Sep 11, 2010 @ 17:37:00

    But, guess what, we DON’T live in Martha’s Vineyard, we live in various parts of America today. My child may, or may not live anywhere close to another Deaf person. She may or may not live close enough to attend a Deaf school. We have to live in reality, not in a fantasy world. Would it be great if the entire world learned various signed languages? Sure. Will that ever happen? No. So, where does that leave us???

    We are choosing to give our children the ability to hear, NOT because hearing people are better than Deaf people (audism) but because the ability to hear could be a tool that could help them in their daily lives.

    I disagree that the success is unlike a club foot. That surgery also has variable success, and only the child knows how “corrected” their foot really is. Doctors and parents can only observe the outside characteristics to judge success, such as a change in walk, shape of stride, and appearance of the foot itself, but only the child knows how it feels. Just like the CI. Professionals can measure exactly how well a child hears, how their language is developing, and parents can observe their social and emotional interactions but no one but the child knows exactly what they hear and feel. It is exactly the same.

    (Oh, and seriously, those are the sperm donor requirements.)

  195. candy
    Sep 11, 2010 @ 17:40:44

    When I see or say “ASL only” as I have in my blog, it has nothing to do with English. Of course deaf people can read and write, of course they are exposed to English. ASL only, is in reference to sign language only without any listening or speaking. Not sure what KL was referring to, but I have a hunch she knew deaf people in ASL only environment knew and/or was taught English.

    OMG!! Everyone thought I was referring to ASL only as no English?! Of course not. How many of you here really thought “ASL only” meant no English?

  196. Jeffrey
    Sep 11, 2010 @ 18:55:06

    “We are choosing to give our children the ability to hear, NOT because hearing people are better than Deaf people (audism) but because the ability to hear could be a tool that could help them in their daily lives.”

    And why can’t the inability to hear not be a tool?
    Fuck Propaganda!

    There is more than what meets the ear.

  197. finlake
    Sep 11, 2010 @ 19:47:56

    Yep, I would not be surprised about the requirements. It’s not called genetic engineering without a reason. 🙂 btw, I’m 5’10” and I wouldn’t be surprised if I decide to pursue Ph.D down the road. Well, maybe, because I like to play. Yep, I’m still stuck in Peter Pan Syndrome. -smirk- With that said, I would say I -may- have a chance with the sperm bank, if I had my hair down to cover up my hearing aids. 😀

    Ahh, well, back to the point of this blog, I would say I do acknowledge this is quite a difficult feat for all parties involved, and it seems it’s almost a stalemate. I could say all parties involved are much interested in the investment of our future generation, d/Deaf and truly a biological child (adopted or not).

    I think it has pretty much boiled down to what to do with those who were “dumped.” The rest who has succeed, we shouldn’t worry about them. One of the commenters, I think it was Candy, do raise a valid point. When a C.I. child or, H.A. child for that matter, actually do succeed in the real world, they do vanish without a trace to be submerged into the large society. As far as my observation goes, we’ve been mostly pointing to those C.I., H.A., and d/Deaf children who did not make it into the large society for a reason to argue about the validity of whether C.I., H.A., and ASL/Bi-Bi/English-only methods are beneficial or not.

    Am I correct on that assessment?

  198. Karen Mayes
    Sep 11, 2010 @ 20:42:46

    Yup… last year, last summer… there was a lady who volunteered at a summer camp that my son went. I later learned that she taught kindergarten at a suburban school. She has a CI and had NOTHING to do with the Deaf community. I never knew about her nor until she volunteered. I asked around about her, describing how she looked, etc, and no one in the Deaf community knew about her. Sooo… hmmm….both Candy and finlake might be right. Also, recently there was a hard of hearing guy who visited Rochester last weekend and he worked at FBI, close to retirement, and again no one knew about him.. he was like a hearing person. They might feel very comfortable with who they are and we should not worry about them.

    The world is complex 😉

  199. Miss Kat's Mom
    Sep 11, 2010 @ 22:21:50

    I agree completely. There are 33 million people in the US with a hearing loss, but only about 600,000 Deaf ASL users. That is a very small percentage, so that means the rest use spoken language and have not sought out the Deaf community at all. I met a mother at CID who had been deaf since birth, grew up orally and has chosen a CI for herself and 2 for her deaf daughter. There are deaf leader of AG Bell (deaf since birth) and I even know of several deaf (since birth) people who work at oral schools. They are happy and successful without ASL. Who are we to decide that they are wrong?

  200. Patti
    Sep 12, 2010 @ 00:00:10

    There r no programs or professions that I know of that ban someone from using a ci or ha

    There are some programs and professions that do not allow folks to use ASL. Who is being told they r wrong q.

    There has always been Deaf folks who have lived completely among the Hearing w no contact w another Deaf person. I know of no Deaf or Hearing person for that matter who has ever lived entirely amoung the Deaf only.

  201. handeyes
    Sep 12, 2010 @ 00:44:42

    some truths i witnessed today:

    – Adult Deaf woman with CI – mother of two young Hearing children – mentions how her own Hearing mother would never sign with her and still does not but oddly enuf when she was an adolescent and they would be out shopping and such – if she did not understand the amount -the mother would take on the role of interpreting in a combination of ASL #s with gestures

    hmmmm not ok at home but ok out in the world in a way that over-emphasized her daughter’s deafness and de-emphasized her independence.

    ironically – the Hearing mom now often will fingerspell with the Hearing grand children – encouraging them to sign and use ABCs etc but still will not sign with her Deaf adult daughter – why? so her speech will be maintained

    – Adult Deaf man with CI – shared how he was raised oral / aural only and his parents still refuse to sign. He makes elaborate excuses why he can not go home for the holidays when he says the real reason is he’d rather be amongst Deaf folks.

    Both of them are oral, both use CIs, both can speak and hear very well. Both wish their parents would sign.

    go figure

    NOTE: i did not solicit these stories – folks know nothing of this blog entry. it is just par for the course of me day that CIs will be dropped in me lap.

    Peace

    Patti

  202. Karen Mayes
    Sep 12, 2010 @ 10:53:31

    Well, Patti… my kids are 5th generation of the Deaf family… going back on my hubby’s side. My mother in law is profoundly deaf and has a CI (the older model of CI) and for some reason, her mother who was also deaf (progressive hearing loss runs in the family… she became deaf at the age of 12 and my mil at 6 years old.) They were very ashamed and embarrassed about being deaf… so my husband grew up not knowing that his deafness was genetic, believing that his mom was hard of hearing due to a serious illness and had NO idea that his grandmom, his aunts, etc. were deaf because they all spoke very well and were good lipreaders. So when my mil learned that her son was marrying a DEAF woman, she expressed a strong feeling about it. When my son was diagnosed at the age of 2 years old, I shared the info with her and she profusely apologized for it. I was like, huh what? Last time we saw them, my daughter who was then 5 years old, insisted on teaching her grandmom the ABC fingerspelling, my mil pushed my daughter’s hands down with an embarrassed look on her face. I was like, hm, wow, the generations of shame visiting on my daughter… no way. So kudos to my hubby for breaking the generational shame by allowing his kids to be involved in the Deaf community, etc.

    I wonder if all of the family members were born deaf, instead of first with normal hearing and then slow progressive hearing loss, things would be very different…

    Sad, isn’t it? My hearing family is a lot more supportive than my husband’s deaf family, ironically.

  203. Shel
    Sep 12, 2010 @ 12:00:03

    Wow Karen. That is quite a tale, and instructive in itself. One could easily assume that Brian was from a Hearing family, and I did assume that! Sigh… gotta remember that axiom about assumptions. Yes, your husband broke the family shame cycle. Kudos to him… and to you for supporting him in doing so.

    It’s so sad that in so many schools Deaf people aren’t educated of achievements of Deaf people from the past from Massieu on forth. They also aren’t educated on ASL literature. Therefore with the lack of knowledge of such, it’s easier to be ashamed. Combine those with the pressures to listen and speak, and you have a recipe for shame towards deafness (a trait at that).

  204. handeyes
    Sep 12, 2010 @ 12:15:54

    Karen –

    thank u so much for sharing this truth

    it made me cry

    re: shel’s point of a “trait of shame” – often seems to be a characteristic of minority people who have been raised with a stigmatized notion of who / what they are

    hard to develop the “content of our character” when folks r saying “u r not enuf” as is

    i have one friend who said to a presenter (Deaf Oral woman who can sign but choose to speak only while presenting about Deaf studies and was discussing “not Deaf enough”) – my friend said – “well, you know i have NEVER been Hearing enough, not for my family of origin, my school, my neighbors, my colleagues”

    that is something that does not make the headlines of the Washington Post

    “Not Hearing enough” but that is what Deaf folks face on a daily basis

    we joked about setting up a HEN (Hearing Enough – NOT) group

    R u a HEN?

    me is – and I feel fine

    peace

    patti

    peace

    patti

  205. Karen Mayes
    Sep 12, 2010 @ 12:29:35

    Patti, you know what? We all are HENs in the hearing community. And in a way or other, we all are DENs (Deaf Enough-Not) ~wink~

    I LOVE hearing people. I LOVE Deaf people. Sadly, the cultures have a weakness… the paperbag symptom. I called it a symptom… you know putting up the brown paperbag up to a person’s face to see if the color of the skin matches the bag or now.

    We claim to celebrate diversity, and yet our understanding of diversity is limited, hence inequality, leading to divisions.

    So many comparisons leading to the uncalled for feelings of superiority and inferiority = shame.

    Have a wonderful day, Patti.

  206. Shel
    Sep 12, 2010 @ 12:51:56

    Karen, actually, I would call it the Paperbag Syndrome. 🙂 Semantics, I know. But it’s applicable here for sure. It’s applicable to all minorities who are stigmatized one way or another, unfortunately.

    You speak of diversity. That won’t happen as long as the USA practices the melting pot philosophy rather than a mosiac one.

  207. Karen Mayes
    Sep 12, 2010 @ 13:05:01

    That, syndrome. I thought it was symptom… my bad.

    That part about diversity. We all forget that beneath our skin our blood is red. It’s our egos that drive us to desire to be independent and our souls that drives us to desire for unity. Conflict, eh?

  208. handeyes
    Sep 12, 2010 @ 13:14:21

    LOVE is the most powerful thing of all

    FAITH, HOPE and LOVE

    i have faith that there is something greater than us guiding us – would we see and listen

    i have hope we will find common grounds – agree to disagree but first we must be honest and challenge ourselves to speak our truths so we know where our disagreements lay

    i have love even when folks are unable to return the favor

    but i do not always have faith, hope and love

    i waiver – i falter – i …..

    so i turn to u all to guide me steps a bit each day

    for comm-unity we have to be able to speak truths – put stuff out on the table even if it is uncomfortable or unclear or controversial

    we will get there – one step at a time

    thanks muchly

    peace

    p

  209. min
    Sep 15, 2010 @ 15:28:40

    I don’t know what I think about implants. Sometimes I can see them on people (adult friends) and have no negative reaction and think it’s cool that people are experiencing benefit and pleasure from being able to hear and identify more sounds. Other times I feel revulsion, honestly, just seeing these artificial things on peoples’ heads and thinking about the fact that they allowed themselves to be surgically altered in order to be less physically deaf. I totally understand to the extent you experience being deaf as a disability that you might want to correct or ameliorate it. On the other hand, as someone who has a strong interest in social justice and has advocated for the rights of signing Deaf people (including myself) for years, I can’t help but see the whole thing as our messed up society’s way of taking the path of least resistance. Instead of focusing on removing barriers (and yes, I suppose I’m incorporating BOTH a disability and cultural perspective into that, so access barriers AND language barriers) it is more natural to our society to just “fix” individuals. When I think about that in terms of EHDI and the tracking involved, it becomes pretty scary to me actually.

    This is complicated for me. I think the visual appearance and symbol of the implant is disturbing to me. I wonder if I am of the last generation for whom that will be true.

  210. eternalcanadian
    Oct 07, 2010 @ 04:54:18

    This person said it perfectly.

    http://www.deafcanadian.com/2010/09/10/its-a-hearing-world-after-all/

    It is not a hearing world just like it is not a man’s world, it is not a white people only world, it is not a Christian faith only world, and with the recent attention on bullying gay people, it most certainly is not a heterosexual world.

    For people to use the CI debate to justify its use by saying “it’s a hearing world after all” should think carefully how different things would have been if the world were still a man’s world, a white people only world, a Christians only world, or a heterosexuals only world.

    Today’s world views being deaf, Deaf, or hard of hearing as a horrible thing, tragic, something that needs to be fixed, cured, or hidden, speech and lip-reading is the only way to go, everyone with crappy hearing must get CIs at all costs, and that it is a hassle and expensive in a hearing world.

    Would women, non-Caucasians, non-Christians (such as Jewish, Muslim, atheist, Hindus, Buddhists, etc.), or non-heterosexual people have stood by and let the majority run roughshod over them? Certainly not, and I think those that are hearing should think twice before they run roughshod over those that don’t have hearing and presume they “know best” how to get them to “fit in a hearing world” whether it be through CIs or other means.

    It seems we all have lost sight of a better use of today’s technology and money; ensuring universal accessibility in society, the workplace, the classroom, and leisure activities, where things audio are made visual. Perhaps then, the day will come when parents find out their child has crappy hearing they will be like “that’s okay, the world is not a hearing world, and it is an accepting, accessible, and universal world.”

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