The Right to be… Deaf – whose choice is it? Part V

The Right to be… Deaf – whose choice is it?  Part V

We have had a sporadic series going here examining if folks have a right to be Deaf.  See part I, II, III, IV (Note: baby Pat is fine – s/he is going bilingual-bicultural)

Is Parental Choice an illusion or delusion – or both?

You choose

“The Professional” asks the parents:  Is the magic ball in this hand?

they choose

NOPE?  Oh dang.  Lets try a different ball.

(“the professional” put hands behind back – shuffle shuffle)

Now choose

NOPE again – Dang.  Hmmm O.D.D. – lets try this remote controlled ball

(put hands behind back – shuffle shuffle)

Now choos

NOPE again – imagine that .  no worries  – we have a few more professionals that will help you with the picking and explaining of why everything thus far has had less than rosey results for ur little Romero and/or Julia

(put hands behind back – shuffle shuffle.  Never mind the fact that I have about a million hands and tentacles.  Better to suck hold of you with dear e)

Now choose

Choose carefully parents because we “respect” your right to choose.  In fact it is paramount to us the professionals, the prenatal specialist, the technician, the audiologist, the speech & language pathologist, the surgeon, the cochlear implant insurance expert, the…..

We all have your and your little one’s best interest in mind as we aim to HELP you on your way to making the best choice for your babe.

What is that you ask?  Ohh that small door there at the end of the hall.  Well, we are glad you asked (not).  That is the doorway into a sad and silent world (oh we cant say that anymore.  Its not PC – ok scratch that – back up the tape).  That is the doorway to ASL which is not really a language.  It is bad English and hurts children’s neuro-placity by stealing all the attention (oh we cant say that anymore .  its not PC – ok scratch that – back up the tape).  That is the doorway to ASL which is a language in its own right with a COMPLETELY FOREIGN grammar that is used by a proud and exclusionary and clannish and angry group of DEAF people that are coming to your home to take your child from you unless of course you choose one of these doors marked – Oral / Aural only (oh, that is right – this door didn’t work for your baby), or this door marked – Cochlear implants & AVT (oh, that is right –this door didn’t work for your baby), or this door marked cued speech (oh, that is right – this door didn’t work for your baby), or this door marked simultaneous-communication (oh, that is right – this door didn’t work for your baby), or this door mainstreaming alone with an interpreter and notetaker / cart and an aide (oh, that is right – this door didn’t work for your baby…)

ODD, eh?

To which they say ..

Well that is just because you didn’t choose properly

You didn’t try hard enuf

You didn’t implant fast enuf (x 2)

You didn’t exclude exclusively enuf

You didn’t drive far enuf

You didn’t jump high enuf

So yes NOW we agree that since your child is a teen  and can not hear nor speak goodly and can barely read or write (that aint right) you can choose that little wee door way at the end of the hall.

Thank heavens for options and parental choice, eh?

Psst parents – u have not failed.  We have failed u – meaning the systems.  The powers that be have utterly failed u because even for the “successes,” there is often a severing of bonds.  There is the inability of your child – years into adulthood to be fully who they are when they are around you.  Yes, you know this is true.  Even for the ones that talk pretty and hear-a-plenty.  They no come home so much.  And if they muster up courage to learn how to sign on the sly much later in their lives, they still will cry when you say – d”on’t come home and sign around your siblings’ children because they might pick up on that hand babble too.”

We know that was what you were told to do but decades later, why are Deaf folks still being told what to do and not to do?

Really, mom and dad?  Really?

That so ain’t cool.  It so ain’t cool that your offspring, the apple of your eye can not talk to you without having to work for their words.  That  you can not have a moment of eye-eye, hand-hand speak.  To be connected unaided or abated.

That you haven’t been given the option, the choice to say to your adult child.  I love you “as if” you are perfect because you ARE perfect “as is.”

So all this Parental Choice is really bull crap o la cuz too many parents are still being told they should NOT sign with their Deaf child.  Too many parents – still.

See

The Reader Family re: their Deaf son and “the professionals” and “Parental Choice”

http://www.youtube.com/watch?v=Hv8cnaoH4IY

Through the Eyes of a Deaf Child – Go to 9:10

http://www.youtube.com/watch?v=FV69iJuXwP4

(ADDED july 1)Dr. Larry Fleischer sharing his experiences with “the professionals” at an IEP meeting and how they had offered him everything EXCEPT…
https://handeyes.wordpress.com/2011/03/18/dr-l-fleischer-re-ieps-fixing-focus/ (text below if don’t know ASL)

Luke of Amazing Race express gratitude for his mom signing!!!  Go to 1:06

(if someone finds the same clip that is fully cc – let me know the link)

http://www.youtube.com/watch?v=zr2NCkfHD60

And Check out:

Deaf Pundit’s Is it Really About Parental Choice

http://deafpundit.wordpress.com/2011/06/23/is-it-really-about-parental-choices/

Don G.’s There is No True “Choice” in Parental Choice

http://www.deafhood.us/wp/archives/1149

Deaf Jeff’s Hey AG Bell, I want to go to college too

http://theterlinguan.blogspot.com/2011/06/hey-agbell-i-want-to-go-to-college-too.html

NOTE to all:

parental choice does not really exist and even if it did – it should not supersede the rights of the child.  Think about bodily integrity folks.  Think about consent.  Think about fully informed choices.  Think about the right to be Deaf and how it does NOT exist.

And when u r done thinking about it… maybe u can do something about it.

Is Parental Choice an illusion or delusion – or both?

Oh and did ya know that four INTERNATIONAL GROUPS have declared that sign language should NOT be denied in Deaf chidren’s education?  See ICED 2010 New Era and Accord of the Future, World Health Organization, UN Convention on the Rights of Persons with Disabilities, and the World Federation of the Deaf

GOT FEET?  See ya at the AG Bell symposium of professionals July 21-23 in DC.  and also let the governor of Indiana know that what he has proposed is NOT COOL (ie the appointing of oral / aural only supporters on a Deaf bilingual school board – duh!)

Centre Jules-Leger students you have done well

Peace,

Patti

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41 Comments (+add yours?)

  1. Miss Kat's Mom
    Jun 30, 2011 @ 22:57:16

    The person who decides whether or not they want to be Deaf is the person themself. If we offer children ASL along with CIs and spoken language services, the CHILD can decide if they prefer to listen and speak or if they want to use ASL. When you bring up things like “body integrity” and “informed consent”, you are quietly pushing against childhood implantation, which I believe is wrong. You can not un-do 18 years of auditory deprivation and magically make a CI work for an adult like it works for children. The ONLY way to actually give the child BOTH options is to implant very young.

  2. handeyes
    Jun 30, 2011 @ 23:34:30

    MKM – we have an obligation to ask about body integrity and informed consent – especially in light of remote control, the push for 100% implantable cochlear implants, recalls, complications and deaths

    but the main issue with CI is that they are coupled with oral / aural ONLY and that is not both

    oh and FYI – many folks have learned to speak and mastered English without Cochlear implants. I do not know of any who have mastered ASL when they have been denied access to it though.

    go figure, eh?

    peace

    patti

  3. Miss Kat's Mom
    Jun 30, 2011 @ 23:39:04

    You know of profoundly deaf from birth individuals who can hear and understand running spoken language of strangers through LISTENING without reading lips? That is what childhood implantation offers that implanting adults does not.

  4. Miss Kat's Mom
    Jun 30, 2011 @ 23:40:45

    It is a common misconception. Yes, people can learn to speak without implants (it is MUCH harder, but surely possible) BUT they can not hear. That is the difference.

  5. ridor
    Jul 01, 2011 @ 00:06:12

    MKM: Listening is such a myth, actually.

  6. Miss Kat's Mom
    Jul 01, 2011 @ 00:12:36

    What? What on earth is that supposed to mean?

  7. handeyes
    Jul 01, 2011 @ 01:28:11

    I think it means that the earth is round mkm but I could be wrong. Not about the earth but about what it means

    Peace

    Patti

  8. Miss Kat's Mom
    Jul 01, 2011 @ 01:31:56

    The idea that listening is a myth is preposterous. This is how people lose credibility. Of course children with cochlear implants are able to listen. We have all seen hundreds of examples of that.

  9. Miss Kat's Mom
    Jul 01, 2011 @ 01:38:47

    And, you know what, I refuse to abide the idea that just because I chose an implant for my child that it means that I don’t love her just the way she is. That is complete and total BS. My life was way easier before her CI. I HAD to give her the opportunity, because I am a responsible, loving parent. It is disgusting and dismissive to think that ANY parent chooses a CI for themselves, rather than for the child’s benefit.

    This is just more of the same old blame game. It is ridiculous. Have you ever, for even a second, come to the parent’s side and listened to the actual reasons they make the choices they do? Do you bother to ask? Nope. It’s just more of the same drivel. Devisive, anger that does nothing but allow extremists to pat themselves on the back and say how misunderstood they are…and it doesn’t do a thing for the kids.

  10. Dianrez
    Jul 01, 2011 @ 02:12:40

    What Deaf people are trying to say about the CI is that it comes with a great deal of expectations, professional pressure, and parental hopes. We know that the hearing that it brings, IF IT DOES, is not a natural, full-spectrum hearing. Expectations and small successes aside, the individual is still at a disadvantage in many cases.

    It may be tolerable for some individuals who, like HOH, get by with carefully structuring their situations and explaining to people. Many, however, are disappointed with the shortcomings and feel like failures when other people look askance at them “what’s the matter? You deaf??” Many put the apparatus away when confronted with the necessity to replace parts at great personal expense or are faced with another surgical procedure.

    Relatively few have spectacular successes, and we wonder sometimes if they are compensating by overlooking its shortcomings by magnifying the benefits in their minds. After all, an individual who endured three reimplantations has to think enough of its benefits to endure its hassles to understand a small portion of all the people part of the time.

    Also, we think that those who succeeded would have also spectacularly succeeded without it, simply because of who they are. That is, the CI was not the reason for their achievements, they are. How do we know? We just point to the hundreds of Deaf people we know who did awfully well without any aids whatsoever.

    Is the CI a godsend even half the time? We don’t think so, but are aware some do. Is the CI essential or even helpful to a good future? We also doubt that, but there are those who think so. Despite evidence to the contrary, there are people who think hearing is absolutely essential to life or it is not worth living.

    All together, with the unknowns and doubts and inconsistent results, what we CAN DO is urge all parents to keep ASL in the environment (at least for the first five to six years) and to avoid those who advocate restricted instruction methods such as AVT or pure oralism. Especially avoid those who say to keep that little door at the far end of the hallway shut tight.

  11. Michele Westfall Ketcham
    Jul 01, 2011 @ 02:24:56

    MKM: You said: “I HAD to give her the opportunity, because I am a responsible, loving parent.”

    Careful there. You just insulted every parent who decided NOT to have their Deaf children implanted.

    Just because we chose not to implant our Deaf children does NOT mean we don’t love them and that we are irresponsible.

    It also does *not* mean that we are denying them opportunities if we don’t have our Deaf children implanted.

  12. Don G.
    Jul 01, 2011 @ 03:37:58

    Patti —

    This is a GREAT blog post. Every Hearing parent of a Deaf kid SHOULD be FORCED to read this, especially BEFORE they go making any decisions about what to do with their child. Yes, I used the F-word here, but it’s THAT important!

  13. deafa
    Jul 01, 2011 @ 04:49:02

  14. Joseph Pietro Riolo
    Jul 01, 2011 @ 09:20:57

    It is very easy to talk about a right but it is usually difficult to explain or propose how it can be enforced.

    How a person is supposed to do when he or she sees that the right of a deaf child to be culturally Deaf is violated? Is he or she supposed to report the violation to police? Is he supposed to report the violation to Child Protection Service (or similar agency)? Is she supposed to report the violation to National Association of the Deaf, Deaf Bilingual Coalition or similar organization that will send a legal team to defend the right of the deaf child? Is he supposed to report the violation to any organization that focuses on human rights? After the violation is reported, how is the right supposed to be enforced? Does this mean that the parents are to be ordered by court or governmental agency to respect, maintain and support the right of the deaf child to be culturally Deaf? What will happen if the parents still refuse to do that?

    Until the mechanism for enforcing the right of a deaf child to be culturally Deaf is proposed or well explained, the right remains an illusion.

    Exactly what did you mean by “bodily integrity”? Does it mean that putting a cochlear implant in the tiny head of a deaf toddler harms or violates the integrity of the deaf toddler’s body? Does it mean that it is morally and/or ethically wrong for the parents to tamper or disturb their deaf toddler’s body by altering his or her tiny head with cochlear implant?

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

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

  15. Michele Westfall Ketcham
    Jul 01, 2011 @ 14:03:04

    JPR…Don G found an excellent article written by the son of Irene Leigh (Darby Leigh) and he’s a rabbi. To make this short, apparently in the Jewish religion, it is a moral violation to do surgery on a healthy body. For example, cosmetic surgery would fall under that classification of ‘surgery on a healthy body.’ Darby Leigh feels that CI surgeries also fall under that same category, since the deaf baby/toddler is essentially healthy when the implant surgery is done.

    MKM: I didn’t say this in my previous post, because I wanted to be polite. But today I’ve decided I will say what I *really* think about the statements you made in this thread.

    You think that any parent who *doesn’t* implant her/his deaf child is not loving and irresponsible and that they’re denying their child opportunities.

    There’s another way to look at this: Parents who implant their deaf children are irresponsible and subjecting their children to a life full of myths and lies perpetuated by the hearing world.

    You notice I said nothing about “love.” I did not include that word because I do believe that fundamentally all parents love their children, so I am leaving that word out of this discussion.

    However, the issue of whether a parent is *irresponsible* or not still stands here and this is what I will address today.

    You might ask, ‘what myths and lies are perpetuated by the hearing world?’

    Answer: The hearing world will never see the deaf child as an equal, no matter how well s/he uses her/his voice. The hearing professionals that promise equality are LYING.

    Answer: Implants do not provide opportunities, because the hearing world will never see the implanted child as a “hearing” person or as an equal, and therefore any promise of increased opportunities is a LIE.

    Answer: Hearing professionals believe that implanting a baby/toddler is necessary in order to prevent the brain from becoming a visual one and to force it to use aural pathways. This is a LIE. How do I know this? Statistics. If CIs in babies/toddlers are supposed to help their brain use aural pathways, the stats should reflect this. The stats should show consistent 90-100% results as babies/toddlers get older. Yet this has not happened. The stats are nowhere near 90-100%. Therefore this premise needs to be thrown out when considering CIs.

    With all the three major lies exposed here, for any parent to continue to consider CI for their baby/toddler is nothing short of IRRESPONSIBLE, period.

  16. Michele Westfall Ketcham
    Jul 01, 2011 @ 14:07:35

  17. handeyes
    Jul 01, 2011 @ 17:10:34

    MKM – i am not feeling angry. a bit sad when i read ur venomous words but not angry. Perhaps a bit of projection on your part?

    yes i have talked to the parents.

    u may notice that u keep referring me to visit the oral schools, see how hard “the professionals” work, talk to the parents, talk to the cochlear implant Co. etc

    im not sure if u realize but i have actually done all those things and more. I aint giving up on ya. I still believe.

    and re: extremists – i aim to be an extremist of love MKM and you have been helping me inch my way closer and closer in that direction.

    thank you

    https://handeyes.wordpress.com/2010/07/21/what-kind-of-extremists-we-will-be-qqq/

    re: listening – there are many forms and many ways, eh?

    Much peace

    Patti

  18. handeyes
    Jul 01, 2011 @ 17:16:25

    Dianrez – thank you

    Michele – and now we see what truly is dividing the Deaf community. it aint solely the communication orientation various systems put upon the child (hello tower of babel), it aint the various devices systems put upon the child (u know more kids have probably had body aids, FM systems, hearing aides, CIs before they even had ASL and captions – odd eh?), it is…

    attitudes and values

    Audism (the notion that to be able to hear and/or behave as a hearing person is superior to being Deaf)

    vs.

    Deafhood (the idea that its OK and even at times good to be Deaf)

    that there is what divides us

    folks who subscribe to an overvaluing of audism undervalue Deafhood (some even deny both A and D exist – that is how blinded they r choosing to be)

    so Michele thanks for making it very clear that that “responsible parent” statement really means – leaving a child Deaf is the WRONG and BAD thing to do

    thank gosh for parental choice??? hmmmmmm

    peace

    patti

  19. handeyes
    Jul 01, 2011 @ 17:20:02

    Don G – gasp u used the F word ie “forced” u know in my many years of Deaf Ed u will often hear folks say “u cant force kids to learn ASL”

    how odd as we are CLEARLY comfortable in the U S of A to “FORCE” hearing and Deaf kids to learn English, math, history, science etc

    so why is it when we say ASL it is considered a sin and “force”

    just asking! and why r the very same folks who say “Choice” “option” “freedom” the ones DENYING Deaf kids the right to ASL + English????

    hmmmm

    peace

    p

  20. handeyes
    Jul 01, 2011 @ 17:30:21

    deafa – thank u for the link. i wish the article had more details in terms of what services the school is trying to deny. if u learn more pls do link us further

    i have seen this happening – that kids and even adults with Cochlear Implants are being denied other services because in the systems say CI are a near perfect fix or they are “good enuf” so therefore they dont need to provide all the other stuff

    i know the govt is surveying adults with CI to determine if and why they need additional support. times are tight folks and the govt is not gonna be too pleased to find out they are shelling out thousands of dollars to cover CI via medicare and medicaid only to find out those folks still need interpreting services, CART, SSI etc

    catch 22 is a comin’

    i have seen it for many folks. its a shame that all the poster child news paper articles, glossy magazines, TV spots in the local news tooting the horn of the MIRACLE OF SOUND – often dont do follow ups 10 years out, 20 years out for the folks that had less than stellar results

    and yes i do know that some folks can hear-a-plenty and speak-a-plenty too but they still face discrimination and in some ways it is sometimes worse cuz looks (and the sound of speech) can be deceiving and make folks think they are cured!

    curiouser and curiouser

    some folks will “pass” as if hearing, some will tread water “faking it as they try their best to make it” and many will flounder, drown, wash out, give up, give in, etc

    we should aim for the greatest number and the greatest good and we should care for everyBODY – not just the poster children

    and we should ask – why is that option of ASL + English so so so FARRRRRRRR away down the hall and thus appears so tiny when in fact it really is enriching and rewarding

    ASL + English have NEVER contributing to harming the child

    oral / aural ONLYism has for many

    hmmmmm odd that that door is often a port of last resort

    (note in the blog entry – i added a link to Dr. Fleischer discussing his experience at an IEP meeting for his daughter where “the professionals” offered him as a parent EVERYTHING EXCEPT for ASL (bilingualism-biculturalism)

    so much for parental choice

    peace

    patti

  21. handeyes
    Jul 01, 2011 @ 18:01:19

    Joseph –

    currently i have seen the RIGHTS of parents eroded by the systems that r supposed to be presenting the options and or ensuring justice

    See many folks experiences with IEP meetings

    (added) and your own for your children (based on what u had commented in a previous thread)

    see the case of a Deaf girl with bilaterial cochlear implants and her Deaf father being court ordered to make her wear them ALL HER WAKING HOURS (added – this girl is now being denied an interpreter in her public schools because she has CIs and seems to “function” fine)

    re: bilingual-bicultural rights – larry seigel has been looking into 14th amendment violations

    re: oral / aural only mandate for Deaf children see the four international documents that say Deaf children shall not be deprived of Sign Language also seem to indicate a RIGHTS issue

    re: human rights violations even crimes against humanity is being strongly considered by multilingual-multicultural scholars re: the mandate to implant with oral / aural only push

    u might want to check out the UN’s convention on genocide

    re: bodily integrity –
    the issue of remote control with CIs and infants and children

    stem cells too may be down the road but they are a long ways off despite how some town criers make it sound like they will be out and available and PERFECT tmw

    biodiversity is a must folks

    peace

    patti

  22. handeyes
    Jul 01, 2011 @ 18:02:24

    michele – thanks for sharing ur pov and the link to Darby Leigh’s article

    peace

    patti

  23. Dianrez
    Jul 01, 2011 @ 18:12:57

    Patti said: “,,, the govt is not gonna be too pleased to find out they are shelling out thousands of dollars to cover CI via medicare and medicaid only to find out those folks still need interpreting services, CART, SSI etc.”

    Elsewhere on About.com Deafness Jamie Berke did some online research and found that SSDI considers those with a CI as not disabled if, after two years, they are able to understand 60 percent of words on a hearing test.

    Although I think this refers to late-deafened persons that had hearing restored through the CI, it could well be applied to all CI implantees.

    Not that losing SSDI would prevent anyone from getting a CI if that is what they want. However, this might be a source of numbers: how many are actually succeeding?

    In another train of thought, I like how people are bringing up the Hearing society concept of implantees as “not equal”. It boils down to actual PERCEPTION and how it is defined.

    For example: a dwarf has had limb lengthening surgery and is now six inches taller than his original four feet six. He is still shorter than the average woman and will never be regarded the same way as a full-grown man. Plus, he has to stop and rest his legs due to residual effects from the surgery. Is he “restored”? Does he have “full function?” Maybe in one narrow area: he can be seen over high countertops in shops and banks. But he doesn’t look like the average man and this is what the public responds to.

    Similar with the CI wearer. There is slightly more auditory ability, but the whole idea of normal hearing and normal competence in the stream of hearing life is not realistic. The side effects are still there, too: time and energy spent on ongoing assistance and maintenance, medical management, etc. that would be better spent elsewhere like on developing innate strengths.

    This could all change if stem cells make a perfect cure with no residual complications or aftercare. For now, that is a moot point. We have a responsibility to our children today: to help them maximize their potential on their own terms, not the terms of another society that will still never fully accept them.

  24. Michele Westfall Ketcham
    Jul 01, 2011 @ 20:43:12

    Right, D-rez. It’s all about perception and right now, the hearing perception is the one that counts, and parents *must* include the “hearing perception” (and its accompanying lies/myths) in their decision-making process.

    And we all know that most don’t.

    Patti…yes it all boils down to Audism vs. Deafhood.

  25. deafa
    Jul 02, 2011 @ 01:56:47

    i think they just did not want the girl on IEP at all so she can’t get ANY service.

  26. deafa
    Jul 02, 2011 @ 13:33:46

    another word, if a child is deaf, rather she wears a ci or not, she should be on IEP. for FM, classroom setting, speech therapy, etc.

  27. Joseph Pietro Riolo
    Jul 02, 2011 @ 14:16:03

    Regarding the article “And the ears of the deaf shall be unstopped: An Examination of the Cochlear Implant From a Jewish Bioethical Perspective” by Rabbi Darby Jared Leigh that Ms. Michele Westfall Ketcham mentioned, I will quote the last paragraph:

    “A consolidation of these views leads only to the idea that from a Jewish perspective we ought not to impose opinions on the people who must make a decision vis a vis the cochlear implant, namely, the parents or legal guardian(s) of deaf children. The responsibility of Jews with respect to the cochlear implant is only to make sure that individuals considering this medical procedure have access to all of the relevant information from the medical community, the Deaf community, and from within Jewish tradition. Once this is done, others should step back and respect the divine image within those individuals, and allow them the space and freedom to reach their own conclusions and make their own decisions.”

    This paragraph actually supports the decision to put cochlear implant in a deaf child if his or her parents decide to do so. Also, it supports the decision not to put cochlear implant in a deaf child. In other words, there is nothing wrong with putting or not putting cochlear implant in a deaf child. Arguments supporting body integrity can be considered and can be valid. But, they do not exclude the other equally valid arguments that do not wholly support body integrity.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

  28. Joseph Pietro Riolo
    Jul 02, 2011 @ 14:40:12

    Yes, I am very concerned about the diminishing rights of the parents to decide for their children. It is not just me but also many parents all over the U.S.

    But, I don’t agree with your position that a deaf child has the right to be culturally Deaf and this right should override the parents’ right to decide how to raise the deaf child. That is where we differ.

    The Universal Declaration of Human Rights states in Article 26(3): “Parents have a prior right to choose the kind of education that shall be given to their children.” This strongly suggests that the parents of a deaf child can choose the pure oralism for the deaf child. I would be flatly wrong but I predict that you would disagree with this parental right. Should this parental right be overridden by the right of a deaf child to be culturally Deaf? I would say no.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

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

  29. Miss Kat's Mom
    Jul 02, 2011 @ 18:52:43

    I never said that another parent has to implant their deaf child, I said that in my particular situation, I deemed that in order to provide my child with every opportunity to be successful in her life, a cochlear implant would be the responsible choice. That is all I said.

    As for people saying “slightly improved auditory ability” and the such, clearly you are not familiar with people implanted in very early childhood. The difference is staggering. It is not slight by any streach of the imagination. The children often hear “within normal limits” and with bilaterals becoming the standard of care, their perception is noise is even improving.

    As for “not 100%” auditory, actually, the latest study of kids implanted young (and using AV therapy) said that 100% of the kids followed for over 4 years (with starting ages of 2-6) showed ALL the kids studied achevied age appropriate levels in expressive and receptive language, speech and articulation, reading, math and self esteem…every area measured. That has never been documented before, by ANY other methodology.

    http://agbell.org/NetCommunity/Document.Doc?id=625

  30. Miss Kat's Mom
    Jul 02, 2011 @ 20:57:21

    And not getting an interpreter or an IEP due to “doing well” is not a CI issue. It has been going on for many many years. The Amy Rowley case was decided 25 years ago.

  31. handeyes
    Jul 02, 2011 @ 21:07:00

    Joseph

    Do u know that doctors audiologists speech and Lang pathologists and many more (relatives neighbors teachers etc) are imposing their opinion all da time

    All da time

    Re bodily integrity I speak o the use of remote contol by “others” into / onto the child

    Talk about imposing

    I have never said parents should not have the right to choose to implant their child

    U know this to be true Joseph so not sure why u h e said the above. Confusing me w another q

    But what I have said re ci are
    – we need facts and all the facts
    – we need an impartial and indep investigation
    – we need to allow Deaf children some down time. Time to just be Deaf. Not to have to be ordered to be ON all their waking hours. Or to be turned off and on at someone elses whim

    And must especially we must ask why they ban ASL w ci

    Pla see the UN convention on the rights of persons w disability on how sign Lang shall not be denied on educ

    And the UN convention on genocide
    Thank u for ur comments joseph. I really do appreciate how much u think

    Peace
    Patti

  32. Joseph Pietro Riolo
    Jul 03, 2011 @ 13:51:32

    I am aware that you don’t oppose the right of parents to choose cochlear implant for their deaf child but it seems that it comes with a string – only that they do not exclude ASL. That’s the general impression that I got from reading your blog posts. Correct me if I am wrong.

    I agree that there are some professionals out there that can be overbearing toward the parents. This needs to stop.

    I misunderstood what you meant by bodily integrity. I now understand that it is just about the control over how much time a deaf child needs to keep cochlear implant on.

    Your statement about the need for deaf children with cochlear implant to have down time just to be Deaf makes me wonder if you have your own definition of Deaf. Can’t a deaf child be even Deaf if cochlear implant is always on?

    I have read the Convention on the Rights of Persons with Disabilities. There is nothing in the document that places any obligation on the parents to use a signed language with their deaf children. If the parents of a deaf child choose pure oralism without using a signed language for their deaf child, the parents do not violate anything in the document. The document requires the governments to accept and recognize the use of sign languages (Article 21(b) and (e)); to facilitate “the learning of sign language” and to promote “the linguistic identity of the deaf community” (Article 24(1)(b)); to ensure that the education “is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development” (Article 24(3)(c)); and to entitle the persons with disabilities “to recognition and support of their specific cultural and linguistic identity, including sign languages and deaf culture” (Article 30(4)).

    None of them forbid the parent’s right to choose pure oralism for a deaf child. They only forbid the governments to actively suppress the use of sign languages through laws, governmental actions and so forth.

    I will read the Convention on the Prevention and Punishment of the Crime of Genocide later.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

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

  33. handeyes
    Jul 03, 2011 @ 21:19:14

    deafa – yep regardless of the accessories – they should have an IEP. i believe most do have the iep as required by law etc however what will be IN the iep is often independent of the actual needs, rights and additive approach to the child. usually its what the school THINKS is best.

    while i dont have a Deaf child – i have written ieps for Deaf kids and i have also participated as a parent of a child with an IEP
    and i see

    i see how they system works

    MKM – amy eventually did get an interpreter in her educational career. As Deaf kids get older it gets harder for them to just “pass” and parents get more savvy or determined to get the services that will give the child a wee measure towards equality of condition

    with the influx of bilaterial implants and the pushing of it as a near cure-all, its gonna get MUCH harder to get additional services and support for these kids

    especially as the economy continues to sink.

    we gotta pay for these unjust wars somehow and we will be paying for them off the backs of our children – not just the Deaf children

    see Waiting for Superman – U.S. education sucks

    boo

    peace

    patti

  34. Trackback: Deafhood Discussions » The Right to be …. Deaf Part V
  35. handeyes
    Jul 04, 2011 @ 03:19:24

    Heye joseph

    re: the strings – well if u r referring to the position that children should not be denied the right to a fully natural and accessible language. yes that is my position and the position of many other folks who have studied in-depth language development, human rights, linguistic rights, biodiversity, multiculturalism etc

    who in their right mind would say forbid the kids from signing

    really – that is just SOOOOOOO old and SOOOOOO wrong

    the fact that some r trying to dress it up as a NEW thing cuz there are CIs now – is even MORE wrong

    that there is the string they use to string the parents along

    that there is the string they use to bind the children’s hands

    we done been there, done that

    dont matter how slicky CIs work – you should NOT FORBID Deaf kids from signing

    its just common sense, common decency, and common courtesy

    do u know i know young adults whose parents say u can not sign in our house?
    their own homes

    they are FORBIDDEN to sign in their OWN homes

    they already mastered the mastery of speech

    they already got all the things needed to accentuate their hearing but they have found ASL and they likey but family says NO – not here not now not ever

    in some places in africa parents can decide on genital mutational – but international communities have said – not cool, wrong, unjust, BAD, boo

    soooooo international communities / organizations / bodies have said it is WRONG WRONG WRONG – oral / aural only. it results in an injustice and it laps upon the child an UNNECESSARY and INHUMANE inequality

    in speaking of the U.S.
    now we have ideals and we also realize that presently the notion that all families will sign and all schools will have a TRUE ASL + English education and all communities will provide ASL + English equality is not realistic so when i advocate for the prohibiting of forbidding ASL from the life of a Deaf child – i am not mandating that all Deaf children must have ASL 24/7. presently that is no doable and heye maybe they wanna use Mexican Sign Language sometimes, or text English, or Latin, or sing to a tune with their supersized head sets on while rocking in their bedroom to lady gaga. thats fine

    its the FORBIDDING of – that is a problem

    its the lying and the myth-a-making about Natural Signed Languages, multilingualism, and Deaf culture that is a problem

    its the push for not allowing what is natural to survive

    its the push for homogeneity

    its the push for eradicating Deaf culture, Deaf people, their language etc

    its the push for denying that a person is Deaf

    its the push for not allowing a person to be Deaf

    re: Cochlear implants and some down time to BE Deaf – i am referring to the case of Emma in which a JUDGE forbid the father and a Deaf child from having time off from the CI – that she must wear them all her waking hourse (except when swimming, bathing, or wearing a helmet for bike riding and horseback riding etc)

    where is her right to BE without?

    if she wants?

    and the 2nd CI was actually causing her discomfort

    the latest i heard was that she was allowed to be cochlear implant free for a couple of hours per day

    a judge who KNOWS NOTHING about anything re: Deaf folks is deciding and mandating all this stuff

    and so im puzzled when some of ya all scream out on behalf of parental rights but dont seem to give a hoot about this case. didnt see none of the “parental rights” is all the rage doing any shout out on behalf of that father’s parental rights

    odd eh?

    the PRESSURE to implant is HUGE and its gonna get worse

    re: the UN convention on the rights of Persons with Disabilities

    u wrote: “The document requires the governments to accept and recognize the use of sign languages (Article 21(b) and (e)); to facilitate “the learning of sign language” and to promote “the linguistic identity of the deaf community”

    so the governments can NOT NOT NOT support or finance or condone programs the FORBID / INHIBIT / DETER etc the Learning of Sign Language and linguistic and Deaf community identity

    EHDI in the u.s. main purpose is to INTERVENE – this means going into folks homes and helping them out with their kiddies

    they best NOT be “helping” them by DENYING the kids that the UN, WHO, WFD, and ICED said NOT NOT NOT to deny – meaning they best NOT be supporting pure Oralism in the home via early intervention or in the homes schooling or in the option schools or in the oral education or in the public settings

    this is not brain science Joseph

    yes of course many Deaf kids r still gonna grow up accidentally oral – they will be dumped into the mainstream – sink or swimming it

    just as i was

    but they should NEVER be raised to be told NO you can not sign. signing is FORBIDDEN

    and that $hit is still happening everyday all day.

    they got more fancy words behind it, more techno stuff inside ’em, more glossy charts and pixs BUT the fact remains, it is wrong to deny a child the right to a fully natural and accessible language.

    ESPECIALLY WHEN RESEARCH SHOWS THAT A NATURAL SIGNED LANGUAGE DOES NOT DETER THE DEVELOPMENT OF SPEECH AND HEARING

    language deprivation is not cool

    re: the un convention on genocide – ill be curious to see your thoughts Joseph

    ur thinking and ur heart is important to me so thank u muchly

    peace

    patti

  36. Ella Mae Lentz
    Jul 04, 2011 @ 17:51:27

    patti, just want to say Im just glad you are here with your heart for justice and powerful thinking/writing. Thanks for this and all you ve said.

  37. Joseph Pietro Riolo
    Jul 04, 2011 @ 23:29:47

    Oh man, so many topics thrown in the discussion.

    Again, if the parents of a deaf child decide to exercise their right to put cochlear implant in the child and to use the pure oralism when raising the child, they do not violate anything in the Convention on the Prevention and Punishment of the Crime of Genocide.

    The only thing in the document that seems to be related to the topic on hand is the term “mental harm” as in “Causing serious bodily or mental harm to members of the group;” (Article II(b)). Although the enumeration of groups does not include linguistic groups (“In the present Convention, genocide means any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, …” (Article II)), I will assume that the enumeration is broad enough to include the linguistic groups that include Deaf culture.

    It may be possible that some people will attempt to argue that depriving a deaf child of ASL is equivalent to “mental harm” on the child. However, the child is usually not a member of Deaf culture if the parents are hearing or are of the Hearing culture. Just because a child is deaf does not mean that he or she is automatically a member of the Deaf culture. In this interpretation, the parents do not violate anything in the convention if they decide to raise their deaf child in a Hearing culture without using sign language.

    Touching on several topics:

    1) It is always my personal position that any deaf child – actually, any child – should have the freedom to sign (not just ASL or any natural signed languages but also SimCom, Cued Speech, Signed English and contact languages). But, I would never want to impose my position on any parents. I would write a true story about a deaf child being punished for signing at home; I would write an opinion article criticizing some parents who do not allow their children to sign; I would make a film that tells about a deaf child who run away from draconian parents who do not let him or her to sign; I would search for grants to research on deaf children who are not allowed by their parents to sign; if I were a professional, I would confront the parents and inform them that they are going too far in not allowing their deaf children to sign; and so on.

    But, I would never want to create a new right for a deaf child to be culturally Deaf. When we create a new right for a deaf child, we are eroding the parental right. This will give a precedent for the majority (read: Hearing culture) to create another new right for a deaf child to have the access to spoken language through cochlear implant and doing so erodes parental right further more. If the parents of a deaf child refuses to put cochlear implant in the child, the majority will say, “See, any deaf child has the right of access to spoken language and therefore, your child must have cochlear implant. Never mind your parental right to decide how to raise your deaf child. After all, you want bilingualism. Giving cochlear implant to your deaf child will help bilingualism. Your child will have both ASL and the spoken English language. More power to bilingualism!” The deaf child is taken away from their parents for surgery at an undisclosed hospital.

    I may go too far in describing the above scenario but it can happen. It is not hard to predict that cochlear implant technology is getting better and better and the success rate is increasing steadily. Before, the success rate was around 1/3 (33%). Now, it is around 1/2 (50%). Maybe, by the year of 2015, the rate may go up to 2/3 (66%). Maybe, by the year of 2020, the rate may go up to 3/4 (75%). It is very tempting for the majority to override the parental right and go directly to the deaf children and have them receive cochlear implant in spite of the objections from their parents.

    Creating a new right for deaf child may be cool now but it could give a new precedent for the majority later on.

    2) On the subject of the female genital mutilation, I read that few women who supported the practice complained that their cultures were being colonized by Western societies that did not respect their cultures. Look familiar? Then, there are anti-circumcision activists and movements that want to outlaw circumcision. They claimed that circumcision violated the genital or body integrity in a boy’s body. Look familiar?

    3) I really do not know all the facts surrounding the case about a deaf girl who was forced or ordered to use cochlear implant in spite of discomfort. I originally thought that this was so wrong but as I read more information, I became doubtful of the father’s real motives. Now, I really do not know who to listen to.

    4) About EHDI not giving the option of pure oralism, this is not what the Convention on the Rights of Persons with Disabilities actually states. It states, “Ensuring that the education of persons, and in particular children, who are blind, deaf or deafblind, is delivered in the most appropriate languages and modes and means of communication for the individual, and in environments which maximize academic and social development.” (Article 24(3)(c)) If the parents of a deaf child decide on pure oralism for the child, a government has the obligation to deliver education in the modes and means that agree with pure oralism. What the governments cannot do is that they cannot suppress or exclude any modes, means or languages when the parents of children with disabilities want them or ask for them.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

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

  38. handeyes
    Jul 06, 2011 @ 00:42:52

    heye ella

    me too is thankful for u

    re: a heart for justice –
    on the way back home i stopped and visited me folks – we chat. i mention about CI failing hot and a co. with oodles of recalls not getting shut down where as other co. that have such a lousy track record for hip replacements or pacemakers would be toast by now and how a lawyer told me when i asked “why no close down” the reply of “because to some its better to risk death than leave them deaf”

    to which me mom – covered her mouth in a gasp and my father said “ohh they dont know there is a Deaf society and how lovely it is”

    true biz

    i kid u not

    this is what they said and how they responded and what they believe and what they KNOW

    i love them so

    so how could i do other wise? than to stand

    note: i did not have the heart to say to dad – “they know dad. they know. and this is why it goes the way it goes”

    i said – some folks give me $hit for dragging out the truth into the light of day – they say “its just a F E W these failing hot, or these recalls etc” my father said?

    “No its the truth”

    “its the truth”

    and our eyes watered

    now in typing this it reminds me a bit of when i was in college – a hearing college and a French teacher morphed a class into a English speech lesson for me to try to get me to say garcon properly – i was a bit puzzled as to why she was making me say GARAGE – i always hated saying GARAGE in speech class cuz i never understood what it was i was SUPPOSED to be doing and now im doing it in a French class with an audience

    i survive the class and tell Dad – she did this…. and my dad – forever a good soul – put his hands on my shoulders looked deep into my eyes and my hurt and said “oh Patti she doesnt understand you are partially Deaf. go tell her.”

    so armed with the truth and the benefit of the doubt to her – i go and see her

    her response

    “no, it has nothing to do with your hearing loss. you have a lazy tongue. say garage.”

    again and again with the office door wide open as a horde of folks wait in the wings to see her.

    hmmmm that didnt really work but….

    it did BECAUSE?

    it gave me the courage of my convictions. it showed me i shall be judged by the content of my character and not by what me ears and mouths do or dont do.

    and cuz when i told me dad he said “awww Patti – lets get you into a different class”

    he knows audism when its been slapped on his daughter’s face. he just always assumes the best in folks first. which is what im prone to doing too.

    later, i get a different french teacher who was actually from france with a big ole accent but sweet as butter – private tutoring. “monsieur, monsieur” what for, what for? i have no idea except that it was very important to THEM that i be able to say it properly along with being able to read and write it. never mind that i have never been to france and when in montreal – reading was handy and dandy. did me just fine

    phonocentrism sucks

    bilingualism / multilingualism rocks

    and the truth – the truth is good

    much peace

    patti

  39. handeyes
    Jul 06, 2011 @ 01:11:20

    joseph

    thank u for sharing ur thoughts

    love seeing u type “oh man…” or shall we say “oh garcon”? or “oh monsieur”

    smile

    ok – i read things VERY different from u Joseph me pal. and i do feel we r pals even if we aint never met or corresponded beyond blog discussions

    re; genital mutilation – it aint just white Western women opposing it – MANY African women – survivors, victims, and allies oppose it vehemently. Are there a few African women who say its a cultural tradition and should be followed – sure and as adults its within their right to volunteer to have their clitoris ripped out of their body. We are talking about young people and doing right for the greater good.

    before we discuss cultural and linguistic genocide – i should have asked if you have read the book by Lane, Pillard, and Hedeberg and if you are familiar with the writings of Tove Skutnabb-kangas

    we can still chat if u havent but it will give me some context of what context u r working from meaning – is it u r just unfamiliar with Deaf folks as an ethnicity or is it u are familiar and disavow it

    from your past writings in support and defense of AG Bell the man and associations pure oralism regime etc i could assume the latter but something in me tells me – hold up. u know joseph is a good soul even if u totally often disagree.

    see see

    re: CI success rate – now around 1/2. is this true? if true that totally SUCKS

    wow that is alot of money, time, risks, etc etc etc for a gamble – wow

    re: the CI case and the judge. Father’s motives aint the issue Joseph and u know that if u r gonna be the town tooter for “parental rights” u gotta stand by them REGARDLESS of parental motives RIGHT?????

    cuz some folks could say “the more i read the more i question Miss Kat’s Mom / Parent’s motives etc”

    nope u say Parental rights are all the rage then…… Dad has rights. he does! or doesnt he. hmmmm just heard the judge’s gable go BANG BANG BANG and NOPE Deaf dad and Deaf daughter do not have any rights or say in this matter. Hearing mom, Hearing grand parents, Hearing judge, Hearing “professionals” and specialists do have a say

    what’s that you say? “Now, I really do not know who to listen to.”

    aww Joseph – come on show me that stuff ur made of that i love so much. the stuff of justice. u r a Dad – u r a Deaf Dad of Deaf children. Do u really wanna see a judge telling ya what u can or can not do with ur Deaf kids. They might have all the wrong orders for all the right reasons

    ill stand for u joseph if your desires for ur child are just, right and good

    i will

    we should do the same for others

    dont get all slippery on me, man

    now re: the various conventions – i will be doing me homework soon as we need it for another assignment where i will pull out what is what

    i got a feeling u may still disagree with me but that is ok

    i aint really here to convince u

    i is here for the voyeurs and the doers and u and me

    we a team – even if we disagree

    thank u again

    much peace

    patti

  40. handeyes
    Jul 06, 2011 @ 14:09:21

    just wanted to highlight these two excellent quotes amongst the comments here

    “We have a responsibility to our children today: to help them maximize their potential on their own terms, not the terms of another society that will still never fully accept them.” ~ Dianrez

    “yes it all boils down to Audism vs. Deafhood.” ~ Michele Westfall Ketcham

    there are many more but these 2 have jumped out at me this a.m. when re-reading on a real computer versus me iphone in the summer glare ; )

    thanks all

    how u shine!

    peace

    patti

  41. handeyes
    Jul 11, 2011 @ 14:54:38

    i have no idea why one of miss kat’s mom’s earlier comments got stuck in spam but as soon as i discovered it there this a.m., i approved it. Might be because of the % symbol? normally only if 2 or more links in a comment will it get routed to spam and this wordpress People of the Eye blogsite hasnt had any trouble auto approving any of ur past comments MKM so im puzzled by that one.

    my response to your comment Posted by Miss Kat’s Mom on July 2, 2011

    i assume this comment was in response to Michele but in case she wont be back due to life being busy etc here are my thoughts re: your comment:

    re: the “responsible parent” you had actually written “I HAD to give her the opportunity, because I am a responsible, loving parent.”

    Re; the study u have commented about and linked (thank u for the link), MKM have you noticed where the financial support for the study came from? See acknowledgements.

    Also note that the N# is very small.

    the study said: “Speech perception improved significantly with moderate to high levels at 50 months after the start of the study.”

    this is not 100% mkm

    also note the use of the word “COMPARABLE” not equal to or exactly the same

    Also note that the study does not take into account at all PARENTAL INVOLVEMENT and SUPPORT meaning that most studies on child success pinpoints 3 chief components:
    1. family valuing and investment in education
    2. standards and expectations
    3. a love for reading

    see the film Waiting for Superman – it showed that how children from very impoverished backgrounds and many strikes against them succeeded well in these charter schools because the family put stock in the value of education for success
    —–
    it might not be the CI + AVT regime that is really contributing to these results. I am hopeful and grateful to see that the CI + AVT are not contributing to harm in the areas measured in this study but we do not know if it is just correlative or causal.
    it is also important to note that there is a lack of any measure re: their success with ASL and Deaf culture self-esteem

    there is also the little issue of how AVT actively excludes signing and visual acuity and how that is dis-congruent with what has been proclaimed to be just right and good via WHO, ICED 2010, WFD, and UN CRPD

    ahhh there is that…. the Right to be…. Deaf question

    and as i have said many times many ways…. i aint got a problem re: folks talking and using listening devices etc

    i got a problem with denying a natural and fully accessible language, i got a problem with making babies and children work for their words all their waking hours, i got a problem with denying Deaf children opportunities to be Deaf

    it does not need to be a binary and mutual exclusive thingy even if that is how the professionals like to paint it

    Deaf folks are LIVING proof that they can learn and excel in both ASL and English soo….

    peace

    patti

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