AFA: Is going through the FDA to investigate cochlear implants the best strategy?
The organization “Audism-Free America” (AFA) recently circulated a petition to encourage the Food and Drug Administration (FDA) to begin an independent investigation into the effectiveness of the cochlear implant for young Deaf children. While I support this idea of an independent investigation, I wonder if the FDA is the right people to be asking to do this. In this post, I discuss some reasons why, and suggest some additional pathways that AFA might take in order to achieve their goal of getting an independent investigation done.
P.S. — Happy 4th of July, everybody!
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Additional Information on the FDA and its shortcomings:
Li-Li's Mom said,
July 4, 2009 @ 4:33 pm
Are you asking for a second set of investigations into one of the cochlear implants already investigated and currently approved for use in the US? Is there some reason you don’t feel that what they have already done is sufficient (do you see conflicts in current safety vs. what’s demonstrated on this site or something else that differs from the facts listed)? I think you need to point to a specific safety issue you’ve found.
Think about pacemakers, for example: a man off the street couldn’t get much traction by sending a letter or petition to the FDA, FCC, or the current administration saying he thinks pacemakers in general should be investigated. The FDA has already done that. He would have to specify a particular brand and model of pacemaker, and provide some specific scientific evidence of a problem with the product.
Following is the FDA page on cochlear implants:
http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/ImplantsandProsthetics/CochlearImplants/default.htm .
I’ve researched all of the cochlear implant companies, their products, and reviewed their materials exhaustively, and I haven’t seen anything that I’ve found with the actual product that is in conflict with what’s ‘advertised’. I think you’d have to point to a specific fact that you think is being used in error for it to be addressed. Which CI firm do you see as providing false advertising and in what way?
DrDonG said,
July 4, 2009 @ 4:42 pm
The questions regarding the CI are concerning:
1) Medical risks from surgery
2) Actual effectiveness of implantation for benefit (cost-risk)
I don’t think we need to look at a specific company, just the CI in of itself. They’re all pretty much the same, just slightly different designs.
Dianrez said,
July 4, 2009 @ 6:18 pm
FDA’s concern is safety and efficacy, and when their standards for both are met, they approve a product unless strong evidence later appears to the contrary.
We might have higher standards, but those are irrelevant once a product has been approved.
There are historic examples of how this went wrong. An example is the drug thalidomide: it met standards for approval then in existence at the FDA, but did not meet the higher standards in Canada’s FDA.
What happened: thousands of babies were born without arms or legs when their mothers took the drug during the first trimester of pregnancy, but babies in Canada escaped this preventable fate.
What we need to prove is to gather up actual patients with bad results from the CI. Each has to be carefully documented: surgical effects, audiologic effects, side effects at specific points after surgery, and patient overall satisfaction with its results, results after rehabilitation, and maintenance. Actual costs would also be good to tabulate. So will the educational and employment level.
Finally, a list of all CI researchers could be made and checked for affiliations that could indicate conflict of interest. An example: several major researchers are affiliated with oral schools, audiology clinics, and the CI industry itself. Sources of funding could also be checked for conflict: funding that came through the CI industry, AGBell or similar institutes, and the audiology professions.
Numbers and subjects could also be checked. This means actual numbers of clients in each study: most have less than two or three dozen subjects. Many research reports are based on the SAME group of subjects. At least one I know of is subjective: asking 37 children to rate satisfaction with their CI’s!
These cases will take years to collect and require navigation of confidentiality (like HIPAA)rules.
We have a strong interest in impartial and neutral data. We also want to know actual benefits in terms of hearing and UNDERSTANDING language and interaction with hearing people over the TOTAL CI population, not selected subjects.
We want to hear from teachers who work with both implanted children and unimplanted children. We want matched samples of people: implantees and nonimplantees of similar age, intelligence, educational level and investigate several aspects of their lives. We want all CI research evaluated for design and conclusions against other research models.
The researchers who have published are going to vigorously and sincerely defend their reputations and their data. Many parents and implantees are going to defend what they believe based on personal knowledge and won’t be interested to learn otherwise due to their considerable personal investment.
While I don’t think it is wise to just let TIME resolve or replace the CI with future new devices and discoveries, we have to realistically consider whether this push for impartial research is worth our effort.
We can ask. And back it up with cases. And hope.
Paul Kiel said,
July 4, 2009 @ 6:37 pm
I have been letting everyone know for the past 20 years about the MEDWATCH program and I did talk to one FDA official about it.
You can see the vlog about it at http://deafadvocate.blogspot.com/2009/06/afa-is-right-report-to-fda-and-its.html
It is imperative that this be done!
Thanks,
Paul
Robert Alfred Hawkins said,
July 4, 2009 @ 7:26 pm
I’m Deaf and a native user of ASL. I happen not to have any need nor desire to receive a CI. Perhaps the CI industry along with the powerfully old-money Oral Establishments and the fledging ASL-CI community may or not take notice of this ambitious request if the likes of DBC and AFA take necessary steps to form themselves as bona fide non-profit entities with 501 (c) (3) status obtained from the Internal Revenue Service.
Robert Alfred Hawkins said,
July 4, 2009 @ 7:28 pm
Additionally, I wonder if National Association of the Deaf and ally organizations have tendered their position on this ambitious clamoring for FDA to investigate?
Mom said,
July 5, 2009 @ 7:20 am
Here you can have my son’s data:
1 CI
0 surgical complications
0 side effects
educated in a mainstream classroom
finished with all “rehabilitation” next week
and by the way…asks for a CI for his aided ear
And no, he’s not an anomaly
parent said,
July 5, 2009 @ 8:12 am
I can’t wait to see what happens. I am guessing that the FDA will laugh you guys out of town. It’s all a personal angst vendetta, and you will not be taken seriously.
Nesmuth said,
July 5, 2009 @ 11:51 am
AFA’s attempts to dirty up the cochlear implant’s reputation is not going to do anything since they dont market themselves to the parents of present and future deaf kids.
Sephar Malevolas said,
July 5, 2009 @ 2:55 pm
Mom’s son is not an anomaly. He is in that decidedly small percentile who flies through the inconsistencies, complications and side effects. The rest is not so fortunate to one extent or another. This is altogether not so different from a disclaimer on drug products: “If you are pregnant, have asthma, heart problems ranging from arrhythmia to high blood pressure, DO NOT TAKE THIS PRODUCT and seek medical advice from your local doctor”. Even though asthma, to exemplify by metaphorical comparison, may have absolutely no effect on or with this product; it is however listed.
Only, the disclaimer is either absent or allegedly opaque here. The often arguable medical “recommendation” from doctors is contingent on several considerations that purport the perceived and (furnished) desired result by means of providing chance assumptions, not medical absolutes, that are thrust onto the (parents of) patients. This product is not so dissimilar to another seeming product of vacant promises amid a potential premise of success, gambling.
But rather, both a gamble of ideology and of healing.
Another avenue said,
July 5, 2009 @ 6:17 pm
What about the NIH’s NIDCD? Don, since you’re an academic, perhaps you could apply for a grant from NIDCD and do the research yourself. Who knows, you might find some interesting data for everyone including yourself.
Li-Li's Mom said,
July 5, 2009 @ 7:11 pm
SM, you may want to check your data source: your ratio is reversed.
nacpac said,
July 5, 2009 @ 7:35 pm
I am sickened to see the unfriendly tone from “Mom” and “parent” above.
What they do not really realize is that they are putting down the Deaf, the very same group of people who are deaf like their children. The majority of the Deaf here are of hearing parents like Mom and parent.
My data here:
2 CI
0 surgical complications
2 side effects
Educated in a mainstream classroom, soon to be homeschooled (only because public education sucks, not because the CI isnt working or that more accommodations are needed.)
One was Vendor B and had to be replaced.
I support the Deaf community’s desire for transparency regarding the CI. An independent investigation is a good idea.
aquambb said,
July 6, 2009 @ 8:57 am
My daughter’s data
1 CI
0 surgical complications
0 side effects
Educated in oral/SimCom preschool, then mainstreamed in Kindergarten for half year, then transferred to Deaf school. She will be at the Deaf school for the rest of her elementary years.
She needs both inputs to learn (visual and auditory).
I support the independent investigation in order to have the transparency information.
Michelle said,
July 6, 2009 @ 9:05 am
I have 13 professional years working with Deaf and HOH clients. I met with many who had severe adverse reactions to wearing a CI. One of my friends died from that and a little 10 yrs old boy was taken to hospital and passed away after an accident. (got his head hit by basketball) There’s one current case with 6 years old boy using 2 CIs and is walking with great difficulty. He does not have a good balance so CIs do affect his equilibrium. Some have uni-lateral face paralyzed, brain injuries, inner bleeding and other side effects. We could have saved them if we leave their rights to consent alone! I believe that poor little boy with 2 CIs would have said no if he became mature enough to be fully medical informed. This is all about fearful propaganda the government and doctors are playing on parents! They are destroying their individual rights, making them sick and sicker. Unfortunately… I never met any Deaf child who appears to be healthy wearing CI!
I support AFA’s action and I agree with dr. G that we should do more about this. To communicate with House of Reps, senators, MedWatch and local civil right offices, they are the ideal ways to get our messages across!
MM said,
July 6, 2009 @ 11:49 am
N.I.C.E (The UK’s national institute of clinical excellence), ran a thorough examination here regarding the effectiveness of CI’s, because deaf challenged that, and because the NHS in the UK was unwilling to fund the many CI options requested, deaf thought this was one way to hammer home a ban ban on child CI implantations, as dangerous and non-cost effective. The cultural argument had carried no weight at all.
The report which came out this year and is on deaf.read somewhere, found overwhelmingly CI’s WERE a major benefit for deaf children. There was no conflict of interest there, because N.I.C.E was a an independent group dedicated to ensuring the validity of medications and operations. Many American pills and potions and operations are still not permitted here because N.I.C.E has not been convinced they are valid or cost effective (A lesson for America to learn ! money doesn’t talk here !).
That they found CI’s cost effective and agreed their usefulness, was the most positive survey we ever had there regarding them, because everyone (Including the ‘Deaf’ activist sector), fully expected N.I.C.E to reject it out of hand, (N.I.C.E was selected by the deaf activist as a ‘weak spot’ because they expected an outright rejection of the CI).
Clearly they under-estimated the value of the CI, and that it would be endorsed by this independent agency. Not only did N.I.C.E endorse fully the CI, but bi-lateral implantations as well. I suppose the message here, do your homework, an professional agency is only going to adjudge on benefit, not, cultural concern. So use statistics figures, justify dangers, and provide proof, talk not with the heart but the head.
They are not going to listen to you if you start, deafness is a right, leave us alone, that has no medical basis, it is a personal viewpoint.
Candy said,
July 6, 2009 @ 5:24 pm
Nice.
Shel said,
July 6, 2009 @ 7:17 pm
I realize I came late into this discussion, but I am heartened to see the stories starting to come out from commenters that there can be adverse effects of the CI, and shows that the CI is not necessarily the best option. This is an improvement over the last couple of years where I have seen nothing but accolades for CI, while stories of negative side effects have been either kept quiet or swept under the carpet.
Like NACPAC, I’m disheartened by the ugly tone exhibited from the commenters she mentioned. I also detected defensiveness from those same commenters. These parents don’t realize that long term ramifications COULD still occur even though they don’t see any in the present sense. I truly hope for their children’s sakes that there are none in the future. It would simply be too heartbreaking for the parents, the children and the Deaf community. I mention the Deaf community because although these children are born to hearing parents, they are STILL part of the Deaf Community, our people.
NACPAC made an excellent point about parents putting down people who are deaf just like their children. This act of turning a deaf ear to Deaf adults who have been there is nothing new. As long as the medical view continues, this blatant lack of respect for the “voice” of the Deaf will never end.
What I find disturbing is that although the risks listed is sufficient to give me pause even if I ever considered CIs for myself, let alone my children. It seems that parents want so badly for their children to hear that they are willing to risk the negative side effects as listed on the FDA page to which Li-Li’s Mom posted a link in her comment. I’m sorry, but I find it quite difficult to understand the willingness to risk my children’s contracting meningitis, for example, just so they could hear.
Candy said,
July 7, 2009 @ 6:34 am
Shel, these are third handed stories. When you have someone say something like so and so told me, it’s pure assumptions. I am more interested in facts. I doubt CI surgery is 100 percent risk free, like all surgeries, there are risks. MM’s input regarding UK’s N.I.C.E is something I’d like to look into more. If there has been studies such as what MM is saying then, that is reliable enough. It seems that the opponents of C.I. isn’t satisfied and will do anything to find one thing that will proof them right. That’s going too far, don’t you think? I never thought C.I. is 100 percent safe, no surgery is. But, it is obviously safe enough for FDA to approve it with minimal risks. I think it has more to do with the competency of the surgeon him/herself more than anything.
Take for example, Michelle’s comment above: “I never met any Deaf child who appears to be healthy wearing CI!”
Well, I have. So, who’s right? These are emotion filled comments that really have no basis. Let’s get real and stick to the facts whether we like it or not.
MM said,
July 7, 2009 @ 6:51 am
Even if you accept the premise everyone is down on the deaf, (Not pr oven I feel), this surely suggests the deaf community has consistently FAILED to prove the positive side of deafness ? It’s pointless forever ‘blaming’ hearing people, and accusing Doctors, and parents of ‘deliberately’ putting their children at risk, since this then by default pits parents against you. They will go on the defensive as would anyone being attacked.
It is also wrong to suggest deaf children belong to the community, they don’t, they belong to themselves. Since unplugging the CI reverts a person immediately back to deaf status, then the choice is always there, if they so choose to go to the deaf community, many in fact wear CI’s and STILL stay in the community. They are born deaf they are STILL deaf.
While meningitis is a risk, you can also contract it a dozen other ways as well, statistically contracting Meningitis is infinitesimal compared with most other aspects.
The deaf community must ask itself WHY it cannot convince people deaf is best for a child. It’s more global than deafness, the same arguments are used for many disabilities. The duplicity of deaf culture in condemning the deafness aspect, whilst endorsing others operations, and medications, yes, even genetics, that remove disabilities in their child, is a minefield as well, do as we ask not as we do !
You have to be consistent or lose your point. You would gladly leave your child blind etc ? if an op could ‘cure it’ ? We know deaf have NOT gone with that. How many pregnant mothers take supplements to offset the probability of a disabled child, none ? ALL ?
The child comes first, not the community, and the parents are the legal guardians of that child, NOT the deaf community, who owes them nothing, and will do nothing, if it all goes down the swanee… Parents then pick up the pieces.
AL said,
July 7, 2009 @ 11:27 am
MM- is this the link that you were talking about?
http://www.nice.org.uk/nicemedia/pdf/ACDCoclearImplantsNationalAssociationDeafenedPeople.pdf
I’d like to post that on ASLCI as a reference for parents and members of the deaf community.
I agree that transparency is important and that all side effects should be fully documented so that parents and the deaf community are informed when they make choices regarding CIs (whether to obtain one or not, or whether to support it or not).
Michelle said,
July 7, 2009 @ 11:31 am
Then the only way we can obtain a proof and hardcore evidences with the results of FDA’s investigation. You have nothing to hide, right?
Shel said,
July 7, 2009 @ 1:21 pm
Candy,
I do see your point about third-hand stories, but the problem is that I have met Deaf children and adults who have not benefitted from the CI/AVT approach and ended up suffering linguistically. There are 9 and 10 years old kids in North America who have only grade 1 English and math because they were not exposed to ASL from an early age, and were placed in mainstreamed environments that were not optimal for full access to education. It is stories like these that continue to get swept under the carpet.
Even if the children were physically healthy and suffered no physical side effects, that linguistic deprivation is even more damaging in the long run. If they were exposed to BOTH languages…English and ASL, then that linguistic deprivation could have been avoided, regardless of whether the children benefitted from the CI or not.
Transparency in ALL aspects of the CI situation, not only the success stories, but also the tragedies, is essential. Until then, there will be many people who question whether the CI surgeries are good or even necessary, especially since the state of being Deaf is NOT life threatening.
MM,
Have we really FAILED to “prove the positive side of deafness”, or have people FAILED to LISTEN to us with open minds, WITHOUT bias FOR hearing ability?
If we use your logic in another context, for example, we could say that for near 400 years in USA since the slave trade began, the Black people have failed “to prove the positive side of blackness” before Civil Rights movement came. Or could we say that the White people FAILED to listen to the Blacks with open minds, without racial bias?
DrDonG said,
July 7, 2009 @ 3:07 pm
Thanks, Shel for your response to MM. I was trying to figure out how best to respond to what he had said, when you said almost exactly what I was thinking! But you said it better!
Michelle said,
July 7, 2009 @ 3:49 pm
Shel, great response to MM! Why don’t you create your own blog?
Li-Li's Mom said,
July 7, 2009 @ 6:17 pm
Shel, you say: “I’m sorry, but I find it quite difficult to understand the willingness to risk my children’s contracting meningitis, for example, just so they could hear.”
Let me try to explain how offensive that statement is — and how ridiculous it is — by asking you some questions in the same vein:
Is your child’s life worth laundry detergent? Is the errand you run every time you strap your child into the car seat worth it? The risks you take by putting your child in a car are exponentially greater to your child than CI surgery.
How do you justify risking your child’s life by allowing him or her to walk across the parking lot into a school? Pedestrian accidents — another extraordinarily high risk for children.
Has your child ever been in a swimming pool? Nearly every day a child dies in a swimming pool. Baths, boating incidents are also a high risk. Are you willing to gamble for a bit of splashing around?
Balloons: choking – if you hand your child a balloon, you are taking a risk. Peanut butter: chance it, and you may be risking your child’s life. Your house had better be brand new, or you could be risking environment contamination, lead, cancer-causing toxins. Hope you aren’t feeding your child fast food, meat products, tomatoes, packaged vegetables, or you could be risking e-coli contamination.
The list goes on and on, quite frighteningly: just take a look at the CDC’s child fatality ranking. Or look at each state’s incidence of child mortality records. You’ll see page after page of dangers. What you won’t find among the high risk activities is CI surgery.
If you send your child to camp, to college, or are in a crowded living condition you are increasing your child’s risk of contracting meningitis. If you have an enterovirus or herpes, you could expose your child to higher risk of meningitis. If your child plays a sport or rides a bike, an injury to the skull of face could increase risk. Unexpected reactions to medicines could increase risk.
Unless you’ve packed your child in a bubble — you should not throw stones at those of us who live in the real world, guiding our children carefully through a risky environment with open eyes, and taking precautions wherever necessary.
Shel said,
July 7, 2009 @ 8:12 pm
Li-Li’s Mom,
ALL of us live in the real world, with everyday dangers through which we need to guide our children safely, like the ones you pointed out.
But consider this:
CI surgery, along with its associated risks, including exposure to meningitis, is definitely an extra risk for a non-life-threatening condition. CI surgery isn’t what EVERY parent has to navigate their children through, unlike the commonplace risks you pointed out.
An analogy I could submit is this:
I would not let my child have a nose job just because her nose might be too big for my comfort as there are risks for surgical foul ups (like the nose of a certain departed celebrity), especially for a non-life-threatening situation. The same goes for breast implants… I
have read of where mothers actually let their teen daughters get some chest augmentation. Actually, I think many North Americans are a little too-surgery happy… look at all those cosmetic surgeries for what are actually non-life-threatening conditions. But I digress.
As a friend pointed out, driving a car and swimming, for example, are things that we need to do or enjoy. And we DO engage in safeguards (car seats, seat belts, pool covers, watch kids while they swim, etc.)to make sure that the dangers are minimized. But if there was a risk
of meningitis every time we let the kids jump in the pool, I doubt we’d be letting the kids jump in the pool any more.
Dianrez said,
July 8, 2009 @ 7:39 am
Both sides are quibbling over this: a value judgment. Parents are saying surgery is worth the child’s hearing, Deaf adults are saying it’s not worth it.
See it our way: cutting open a child’s head, drilling bone, messing around with tissues, inserting a foreign body, sticking a wire into a delicate organ just a millimeter away from their child’s brain. And a very good chance of repeating this a few times during one’s lifetime. EEEWWWWW. Not for anything, including hearing, would most Deaf adults go for it. It just ain’t worth it. Full stop.
Parents have the opposite view and inexplicably (to us) value hearing a lot more than the prospect of the surgery. Honestly, the two views are incompatible with one another.
Then you have people in the middle, who “realistically” consider the risks and the possibly limited benefit and still value hearing over the drawbacks of the surgery. All right. It’s a free country, go under the knife as you want.
But, it’s still about VALUES. Living as a Deaf person ain’t all that bad and it’s a satisfactory way to live. Just as being Black in North America is. There are disadvantages about it, but it’s mostly a matter of education both ways. Personally, I feel as most Deaf adults today feel: why bother with the hassle, the pain, the complications and the maintenance and even trying to be hearing like everybody else, for what? I like my unscarred, uncomplicated, no-maintenance lifestyle. And the freedom from associated expenses such as batteries and audiology appointments.
DrDonG said,
July 8, 2009 @ 9:07 am
D-Rez –
Well-said, plus let’s not forget that the child has no choice in the matter of whether to go through all this hassle that you so nicely describe.
Shel said,
July 8, 2009 @ 9:56 am
DianRez,
Beautifully said!
Candy said,
July 8, 2009 @ 9:28 pm
Shel, I want to bring up something that many do not talk about. Many of the CI kids who do not do well, apparently are not really into AVT. Many of these kids do not have parents that really work with them. We have seen again and again, that the parents that really gets involved typically shows better success of their implanted child.
There is NO question that if one were to be able to hear, one would be able to have better English proficiency. It is a given, which is why deaf people have had to work harder to gain English proficiency.
My main concern has always been the ones that fell through the cracks and that we need to find out why and make sure it does not happen. To say that ASL is the answer is not going to solve this problem simply because the parent opted out of it in the first place and did not follow instructions for successful C.I of their child to a T. I have said before, and I will say it again: There are too many minorities being implanted and their non-English speaking parents do not involve their kids in AVT nor do they speak English at home. Then there is a newer issue that asks this very question: are the professionals prepared for an increase of implanted kids that requires necessary services such as AVT? Apparently there are not enough, just as there are not enough ASL/bi-bi teachers for the deaf.
We need to be more concerned in areas where failures are concerned and to nip it at the bud, to blame it on choice is lame. Implants are a great tool and the language of ASL is a great one too.
Be part of the solution rather than be part of the problem. Let’s look for ways to improve things rather than looking for ways to bring down a choice that parents have opted for.
Dianrez said,
July 9, 2009 @ 6:31 am
Candy, your remarks have import. However, we need to prove that AVT with its prohibition on visual language is valid.
It is also lame to blame failure of CI kids to learn English on not using the AVT method.
I feel AVT is a dangerous because it limits input in an area that is crucial to the deaf child: vision. ASL is only part of it. Also important is recognizing words in print, in fingerspelling, in any visible form.
Parent involvement IS crucial, whatever the method. So is early introduction of reading. So is a comprehensive approach involving both ASL and auditory training.
Candy said,
July 11, 2009 @ 1:58 pm
Lame? I don’t know. I’m sharing what I know via input from a teacher who has a whole bunch of CI kids who’s parents do not know English and who are not actively involved with AVT and who’s parents are not involved.
Definitely there needs to be a task force of some kind to investigate this and find out why there are kids who are being implanted that are not succeeding in all areas of listening, speaking and language!!!
I don’t think AVT is dangerous. I’m not too sure about prohibition of visual language along with AVT either simply because I do not have implants (yet) and I’m not a child. I actually think that it wouldn’t hurt based on my wearing a hearing aid, having ASL as my first language, and the fact that I can speak fluently with a visual language background. But, I do understand the importance of focusing on AVT without signs in the beginning to reap the benefits of success. However, I do question long term prohibition of visual language with implants. Then again, it is possible that there are so many factors that comes into play.
Definitely parent’s involvement is VERY CRUCIAL. We agree on that.
What we see online via many parents (DR and DV) is evidence in itself. However, we are not really seeing a true picture because obviously there are parents/children out there that do not go online to share the downside or the un-success of their kids/implants. We know it’s out there. Nothing is perfect in our world. I know it’s out there because, if one is totally in tune with the deaf education as it is, one will hear/see many teachers of the deaf of a mainstream deaf program gripe about extra work and frustration of kids “dumped” at their schools. This is where I got curious and started to ask lots of questions and then when I find out most of these kids are minorities with parents who have no English knowledge, both written and spoken, I was like whoa! What’s going on here?
What really turns me off big time is the fact that many parents of successful implanted kid(s) tend to not go into this area. Perhaps, they only have time to focus on their child(ren)as it is. If I was a parent of a successfully implanted kid and I hear of these kids who fell through the cracks, I would be concerned because I would want others to benefit the same as my child so that the stats would reflect not only my child but all children who succeeded as mine did.
You would think that parents of kids who are successful would be involved to make sure these things do not happen to other kids in order to shine a good light on implants. Then again, most parents are only concerned about their own and nothing more.
I’m actually seeing big pluses of implants and correlation of implants with the ability to speak/write excellent English. ASL makes it harder for one to achieve that, not impossible, but harder. Not every child has the ability to work harder.
Using my siblings and I as an example, I have better hearing than they do. We all wear hearing aids. ASL was our first language, we are exposed to ASL everyday. We go to a mainstream school, we have speech class twice a week. I am the only one that has better English than all. Why?
How did that happen? We all read books. So, the answer to that, for me, is the ability to hear. I hear more, ergo, my English is better. no? Or is it because I am more in-tune to sounds around me and practice listening on my own, i.e., the desire to listen/speak so I can be involved with the world around me.
I find that having the ability to hear sounds helps a lot with English because of listening skills and AVT is part of that.
I know this is late, but I wanted to throw in my two-cent, so to speak.
DrDonG said,
July 11, 2009 @ 3:38 pm
Candy –
I think you’re making a false analogy by example. You have more hearing than your siblings, and you have better English than them. By your logic, this means that using sound-based/Hearing-centric educational strategies is what works.
However, I would bet almost anything that your schooling did not include any ASL-English bilingual strategies. Instead, your teachers probably used such Hearing-based strategies such as phonological encoding, which would work with students like you, who have enough hearing to make use of this type of strategy, but would not work with your siblings who probably didn’t (according to you). Now, imagine if ASL-English bilingual education had been used? I bet your siblings would have English just as good as yours. And, I notice a few (minor) grammatical errors in your comment here. If you had been exposed to ASL-English bilingual strategies, it’s possible that your own English might be that much better, since you would have been able to draw on two languages — your home/native language of ASL, plus English.
patti said,
July 12, 2009 @ 1:23 pm
Don
Big thanks for vlogging about this and for signing the petition.
Your concerns are very valid and ones we well considered. We did examine if the petition should be direct directly to the FDA and our examination as well as advise from folks very close to investigating CIs said – FDA is the place to hit as they r the ones who approved it and have an obligation to make sure an impartial investigation is set up to address the concerns and issues identified. Most importantly the AFA petition identifies that Deaf experts must be part of this investigative team.
The other areas you mention are important ones and surely avenues we all can pursue individually and collectively.
Thank you again for your support and for vlogging about this topic. Of particular concern for all of us whether we be people who support CI or oppose them or those who have questions about them – is the premise that many scholars have put forth that cochlear implants with the oral / aural only push is a form of linguistic and cultural genocide.
We have seen this take place in Sweden and being aggressively pushed in Australia. Just as the Milan, Italy 1880 proclamation of incontestable superiority of speech jumped the big puddle called the Atlantic in the early 1900s despite great efforts from Deaf and Hearing leaders to prevent it from ravishing the Deaf ASL-world landscape so too seems the CI / AVT mandate will reign unless we collect facts and share testimonies of the adverse impact it is having on a people and a language.
I am very thankful to the parents who have chosen to raise their children bilingually-biculturally Li-Li’s mom, Karen M., Candy etc However, you are in the smallest of smallest of minorities – and there is a huge surge of implanting infants while omitting ASL and often with the explicit purpose and hope that their bee no need or use of ASL in the Deaf child’s life. This ain’t cool folks.
Peace
Patti
Miss Kats Mom said,
July 13, 2009 @ 11:21 am
1 CI
0 complications
0 side effects
1 whole new world of sound and language opened.
ASL said,
July 17, 2009 @ 9:15 am
In early 1950′s, not even CI was inserted anyone, DHH was able to read, lipread and speak. Their reading and writing were considerably higher than today’s deaf education standards. Parents are not the only ones to look at, but we must take a look at teachers who are supposedly “experts.” From what I recently learned, some teachers are biased and payrolled by the field where they knew the success is on the flip side of the coin. It is all about $$$$. One interesting note, I recently spoke with an “expert” explaining that one family of the deaf baby(implantee candidate has) kept getting calls from the CI/John Tracy Clinic EVERYDAY to urge the implantation. It does include some subtle threats. It is a bad picture right now about CI industry chasing/coercing the families who are not experts. It is louder than I thought. Of course the mother is trying to be careful and not being sold.
ASL said,
July 17, 2009 @ 9:31 am
Of course, that “expert” has finally changed his/her heart yet a lame duck because of the martketing blitz, orcherstrating all of these certain education personnel to quack, “CI is a cure, final answer,” to all victims-to-be parents and babies. It is a SURGE right now. TSUNAMI, if you can think. The expert kept turning down the stipends and alot of money to trade the incentive, so AFA, FDA, DBC were the ones I recommended.
One day, that I hope, a new role of fed government soon will have their power/role to oversee and make decisions over our free-market policy that doctors are motivated for incentives (for their own benefit!) Tide’s still too high because doctors are very concerned about a new change. The govt will look at those doctors who did make millions and will be valued. Those doctors will be gone moving out the country once fed govt will take over.
Dianrez said,
July 19, 2009 @ 5:36 pm
Somewhere back in the discussion, I saw that learning literacy (English and reading fluency) was tied to the CI.
To quote one respondent: “I’m actually seeing big pluses of implants and correlation of implants with the ability to speak/write excellent English. ASL makes it harder for one to achieve that, not impossible, but harder.”
Whoa. Other than a successful phonics approach with SOME children, there is no proof that hearing equals literacy even in the general hearing population.
For the Deaf population, no matter what hearing devices they use, literacy is also independent from hearing!
Reading is taught visually and when it is not tied to hearing avenues, practice and love of reading becomes an unlimited access to literacy, education, sophistication and the world.
Let’s not confuse the CI with literacy. There are too many hearing illiterates to support that theory.
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