Dark Side of Cochlear Implants in 1980’s and 1990’s
What remains hidden are the Deaf people who were implanted with C.I. as children, teens, and adults in the 1980’s and 1990’s.
Back then, doctors and oral educators were convinced that once these people who have never understood spoken language received cochlear implants, they would be able to hear, after appropriate aural training. At that time, these professionals weren’t aware that the plasticity of the brain being limited by age. In other words, if Deaf people were implanted after their brains were ’set in their ways’, so to speak, their brains wouldn’t be able to decipher speech.
Many parents believed what the doctors and oral educators told them and went ahead with this experimental surgery. Many of the prelingually deaf kids and teens were led to expect success, pressured or forced into being implanted, then underwent countless hours of speech and aural therapy. A few did succeed in comprehending speech, but most didn’t as they were too old to master the speech comprehension from using the cochlear implants.
The doctors learned from their mistakes with older prelingually Deaf people and moved on, working with the younger deaf infants and toddlers. Left behind were these victims and their devastated parents who desperately wanted their beloved kids to hear and talk.
These victims need to be heard and this dark history exposed to the light.
After all, these Deaf people were experimented upon. To this day, they are still paying the price, physically and psychologically.
What happened to the doctors’ Hippocratic Oath “Do No Harm”?
What remains hidden are the Deaf people who were implanted with C.I. as children, teens, and adults in the 1980’s and 1990’s.
Back then, doctors and oral educators were convinced that once these people who have never understood spoken language received cochlear implants, they would be able to hear, after appropriate aural training. At that time, these professionals weren’t aware that the plasticity of the brain being limited by age. In other words, if Deaf people were implanted after their brains were ’set in their ways’, so to speak, their brains wouldn’t be able to decipher speech.
Many parents believed what the doctors and oral educators told them and went ahead with this experimental surgery. Many of the prelingually deaf kids and teens were led to expect success, pressured or forced into being implanted, then underwent countless hours of speech and aural therapy. A few did succeed in comprehending speech, but most didn’t as they were too old to master the speech comprehension from using the cochlear implants.
The doctors learned from their mistakes with older prelingually Deaf people and moved on, working with the younger deaf infants and toddlers. Left behind were these victims and their devastated parents who desperately wanted their beloved kids to hear and talk.
These victims need to be heard and this dark history exposed to the light.
After all, these Deaf people were experimented upon. To this day, they are still paying the price, physically and psychologically.
What happened to the doctors’ Hippocratic Oath “Do No Harm”?
April 28th, 2008 at 11:16 am
Its pretty obvious.
A much more pressuring issue at hand currently is the dark side of deafside and division within deafread and trashing towards asl-ci and many ci individuals. they didn’t do anything wrong. So, what makes you think they care about these older implantees? We can’t change the past, but we sure can do something about our present situation.
April 28th, 2008 at 11:18 am
Candy, I don’t like you because you are very rude to Deafhood.
April 28th, 2008 at 11:18 am
Yup… I noticed that also. Which is sad, but true, about learning from mistakes. That is who science works (animal testings, human trials, etc.) Which partly explains the hostility from 80’s and 90’s CI people.
I understand Candy’s comment. Many parents say that whatever happened to the older CI people should not be revisited on their younger CI people. I wonder if there are any organizations which could help out with resolving the issues with older CI people?
Not only CI people, but there are other medical victims as well (like trial drugs, etc.)
April 28th, 2008 at 11:19 am
When I say organizations, I mean some kind of reimbursement, some medical corrections without any further damages, etc., on free of charge, for older CI victims…
April 28th, 2008 at 11:19 am
MZ- You said: “At that time, these professionals weren’t aware that the plasticity of the brain being limited by age.”
Are you sure? Or is it your opinion?
April 28th, 2008 at 11:19 am
I walked breaktime during my work so I met deaf employee I asked her user CI and I asked some nice question to her. New model CI have soft plastic inside won’t break it and needle on back ear is different in past old CI. I asked her can you hear like hearing talk way but she said not completed 100% with not everything when you turn face someone talk on back that hard to understand and she said sound was so great like TV HD with sound system that all she explained me. I am sure speech not easy to successful but very few who can. I told her I rather use hearing aid have good enough to hear it.
April 28th, 2008 at 11:47 am
Candy, whether the newer deaf implantees care or not, these older C.I. implantees need to be recognized and not swept under the carpet. The history of cochlear implants should reflect that the Deaf people were experimented, with many psychologically harmed consequentially. I won’t be so quick to dismiss the suffering of these Deaf victims.
Karen, there seems to be none for the c.i. people. The older C.I. victims who want their implants removed often find out that their insurance policies don’t cover the removals, so they are stuck unless they are willing to shell out the money from their own pockets.
Brenster, this is what I’ve read. This new understanding is the rationale of the surgeons’ current trend of implanting deaf babies, to maximize the benefits of the young brain flexibility, so the young brains of these deaf babies can better be trained to decipher speech
April 28th, 2008 at 12:15 pm
Candy, the successes of the CI users today were built upon the failed experiments. By no means am I saying that we should obsess over it, like some people on DR are prone to… but it is disturbing to me to see people flat out refusing to recognize this did happen, and it should never happen again.
People seem to think the present occurs in a vacuum, and that isn’t the reality. The present we have today is because of what happened in the past. The very least we can do is to learn from the mistakes made in the past.
April 28th, 2008 at 12:22 pm
Ok, so you’re saying people are saying that it didn’t happen like the holocaust didn’t happen? ahh gotcha.
Isn’t that something one take, as a risk, if we choose to participate in a clinical trial?
April 28th, 2008 at 12:31 pm
*raises an eyebrow* I’m just going to say this to you, Candy – No. It’s not like that, and you damn well know that.
Have a nice day.
April 28th, 2008 at 12:35 pm
Those older generations with the old implants were the first ones that met their requirements along with the decibel # status. That was partially experiment. However, some of them were not successful.
Now today with the medical technology, everything has been changed nowadays.
April 28th, 2008 at 1:01 pm
Abortion is sin
Death penalty is sin
Rape is sin
Robbery is sin
C.I. is sin
ASL is NOT SIN
April 28th, 2008 at 1:10 pm
“Futures made of virtual insanity now
Always seem to be governed by this love we have for
Useless, twisting, of the new technology
Oh now there is no sound, for we all live underground”
-Jamiroquai
April 28th, 2008 at 1:19 pm
Brenster Says:
April 28th, 2008 at 11:19 am
MZ- You said: “At that time, these professionals weren’t aware that the plasticity of the brain being limited by age.”
Are you sure? Or is it your opinion?
==================================
It is generally true, once the pre-lingual deaf child fails to make use of language decoding part of the brain, the language part of the nerve network becomes severely atrophic. In some cases, the lack of use language part of the brain would make network path to a higher language skill to be permanently damaged.
In fact, you can try the Stone Age method and it may work wonderfully– just ask any cavemen, they will tell you their wives became more talkative after being clubbed in the head….. just pick up a baseball bat and smack it on the left side of the head…. the atrophic nerve that deals with language inquisition part of the brain MAY WAKE UP and would allow them to reconnect to the network part of the brain; it begins the process of decoding language nerve stimulations and gains some connections to the higher abstract language part of the brain. This could be the stepping stone to higher language development for those pre-lingual deaf children.
I should know, I was born deaf and had poor language skill until I was smacked by a car that nearly destroyed my left side brain and body when I was a 5 year old kid. After waking up from coma and recovering from head injury, many strange stimulations running wild inside my brain whenever I pick up something to read… this didn’t happen to me before being smacked in the head. I get concussion very easily due to severed fractured skull but to tell you the truth, every time I get concussion, my ability to understand and writing English exploded in a big time.
April 28th, 2008 at 1:22 pm
David, that reminds me of the movie “Phenomenon”, with John Travolta
).
Brains are a mystery!
April 28th, 2008 at 1:49 pm
We need to recognize and applaud those who were pioneer patients in today’s rapidly advancing medical field, similar to Philip Blaiberg who volunteered to be the first heart transplant patient. He did not live long, but his contribution went a tremendous way and his surgeon Dr. Christiaan Barnard reaped all the glory as well as learned from Blaiberg’s death.
No matter the circumstances for being implanted when CI’s were still experimental, the early patients have suffered through mistakes so that today’s CI implantees can succeed. They deserve at least a thanks, or compensation for their damages and payment for removal/replacement if desired.
It seems odd surgeons and audiologists were “unaware of the plasticity of childrens’ brains”. Educators have always known of the critical age for language development from the 50′s so it would have to be extremely shortsighted for surgeons to ignore that. Perhaps they were oversold on the CI in the beginning and chose to ignore that possibility, even to omit mentioning it to the parents of early patients.
Being a medical pioneer is no fun. The surgeons and the developers of the device get all the credit, and the patients get pain, uncertain benefits and an unproven chance at improvement. They and their families paid in many ways–lost time, lost wages, aggravation, disappointment, anxiety, just to mention a few. Add to that a lifelong effect on one’s health. There has to be a certain insensitivity and recklessness in the field of medical experimentation so that it can move ahead.
There is so much to learn about the brain and the CI still has a very long way to go today. The earliest implantees deserve their place in history.
April 28th, 2008 at 1:49 pm
Maryland #12
Appaulded you about sinner .. I agree that ASL is not sinner. Native everything about loss of hearing or before or after birth, your comment made me a congitious laughed!
Deaf Pixie
April 28th, 2008 at 1:59 pm
Apologies, it was Louis Washkansky who was the first heart transplant patient. He lived 18 days, and Philip Blaiberg lived 19-1/2 months after the second transplant. Do we know the name of the first CI transplant, and how has he/she fared since?
April 28th, 2008 at 2:03 pm
Maryland and Deaf Pixie,
Your comments are disheartening and down right ridiculous.
MZ are you asking those who you discuss to comment? unsure of what you’re expecting here.
April 28th, 2008 at 2:03 pm
David #14 – I do not see what your response relates to my question to MZ. I know about the plasticity and age. I was skeptical that the drs were NOT aware about plasticity at that time. They were just desperate for guinea pigs.
Today’s CI successes are actually at expense of our people. For that, we should NOT simply sweep that under the rug and forget. Successful CI users should recognize and be thankful to them. I haven’t seen that!
Not that I said that we should obsess over that, but there is still NO formal acknowledgment and appreciation. NONE. Instead, what I see is a repeated cycle of denial and hatred toward Deaf people who are resistant to medical perspective of hearing/deaf. That got to stop! A few comments above are excellent examples.
Candy made a fascinating and typical point: “Isn’t that something one take, as a risk, if we choose to participate in a clinical trial?”
“WE”? Actually, the PARENTS were the ones, at least for the most of time, who put their children at risk by participating them in experimental trials. Older kids who made the decision were often pressured by doctors, parents and other medical professionals.
April 28th, 2008 at 2:10 pm
Candy, you said it(deaf rejects CI). We want to welcome CI people if they are desired to learn and embrace deaf culture or involved deaf community. They became with deaf friends then backfired. Why? They tell them they are better than them, acted superior than them, mocking their ability of speaking, etc, etc, etc. Your point is nothing to me, really! We wanted to give many positives on ASL, YOU and other CIs had fed by those audist organizations all LIES about ASL and successful deaf decent citizens. We fight to protect our pride are ASL, Culture, traditions, and successful jobs.
You said we make a lot of negatives on CI and heard many myths. LOL because you are too much on ONE sided. We heard TWO sides. We make sure all individual who gets CI, is happy or not. We support whatever they want to do. As long as they are not falling for audist people who fed into their minds BAD about ASL and deaf community. CI people tells deaf people without CI, that they are lower than them. THAT’S NEGATIVE!
Personally, I am against CI on babies!!!!
April 28th, 2008 at 2:24 pm
Word on the Street:
Audists pay puppets well.
yak yak yak
yak yak yak
Not to befriend the Deaf but to belittle and do the advertising of hooey.
Hoos show up,.. aww, see success story, then expect same for all deaf people.
This establishes the ideal that because of the day and age,.. all deaf people who get a cochlear implant will have a life without barriers in a hearing world.
What y’all be smokin?
Damn.
If a deaf person chooses not to get an implant and rely solely on their sign language, they’re considered dumb and incompetent.
Dont’t tell me all y’alls be mindless crackheads.
Tweakin on denial.
Sho ’nuff!
But will they ever get it?
HA!
April 28th, 2008 at 2:52 pm
I see that we have a David Chappelle impersonator amongst ourselves, and a mediocre one at best.
April 28th, 2008 at 2:52 pm
Brenster, some of the parents were victims, too, as they were led to expect a higher success rate, too.
To this day, FDA’s measurement of success with the cochlear implantations doesn’t include aural comprehension. That is a very bad oversight on their part.
April 28th, 2008 at 2:54 pm
I already mentioned about “Dangerous Medicine” special exhibit at the U.S. Holocaust Memorial Museum about the same parallel within the Nazi Germany and AGBELL’s constant experimentation on human beings against their own will or without their consent on my latest blog posting.
The victims of oldest CImplantees ought to be revisited in name of human enlightement.
The Nazi Germany tried to change the eye colors of victims or change the sexual preference/desire of any GLBT. Same thing happened with the AGBELL.
Please do not let the AGBELL to get away with the oldest CI receiptents.
AGB surely killed President James Garfield with his medical protype – metal detector which caused Garfield to suffer the internal bleedings. AGB purposely pushed the machine on Garfield’s stomach area to find the metal bullet. AGB failed of doing it!
AGB should be imprisoned for causing Garfield more physical sufferings and unnecessary medical probings (pokings, too).
RLM
RLM
April 28th, 2008 at 2:59 pm
I don’t think AGBell Association had anything to do with the early cochlear implantations. The experimental trials were conducted in medical research universities and later by private doctors.
April 28th, 2008 at 3:02 pm
MZ, “Who are the victims” is not my point. Candy pointed out that CI failures themselves took a risk for agreeing to participate in the trial study. In the reality, the parents themselves are responsible for that. They are adults who ultimately made the decision for the children. Unfortunately, yes some (not all) of parents were also victims falling under pressure from the medical professionals. Still, in my opinion, they could have done more but it’s irrelevant to my point, so I’ll not elaborate.
Your rebuttal amazes me.
April 28th, 2008 at 3:02 pm
E,
Pass that $h!t over here…
*cough, cough, cough*
April 28th, 2008 at 3:08 pm
Brenster, you are right. Ultimately the parents must take the responsibility of making the decisions for their children as they are the ones who signed the papers. Most of their children weren’t fully informed.
Candy should already know this as this isn’t a secret in the Deaf Community. Many Deaf children and teens didn’t volunteer to be cochlear implanted.
April 28th, 2008 at 3:15 pm
I think she did a great job posting this.
April 28th, 2008 at 4:04 pm
Huh, that is what is frustrating… signing the paperwork thereby being willing to take risks of surgeries.
But if there are any lingering side effects from older CI surgeries, like headaches, facial paralysis, etc, which interfere people’s daily lives, surely, there should be something done about it.
*sigh* If there are no side effects, then no need to remove it. Because all surgeries carry risks.
April 28th, 2008 at 4:05 pm
True Mishkazena, kids don’t volunteer and parents took risk on behalf of the kids. So, I’m a bit lost here…are we blaming the parents now?
I think many of us are aware that when it comes to new things, there’s always trials and tribulations. It seems perhaps there should be something in place to protect the kids when it comes to experiments. Again, parents are always the one with authority over decision making when it comes to their kids.
April 28th, 2008 at 4:07 pm
Dianrez in #18:
There was a deafened Baltimorean whose name I hesitate to dislcose without any permission. Retaining excellent speech, he announced on his graduation day in 1952 that he would be going to the Johns Hopkins University Hospital in Baltimore “for an operation to open my hearing”. Maybe he did not have a name for “cochlear implant” at that time. Then he had never been heard of ever again.
Concurrently, a Frenchman underwent the cochlear implantion in Paris in 1957. His name was not revealed in a French newspaper, “Le Monde.” He was just called “le sourd” (the deaf).
The aforementioned Frenchman reappeared in the French public more than 30 years later, joining a demonstration in Paris with deaf French people, protesting against a CI surgeon and human-circled all hospital doors, thereby preventing CI surgeons from entering in Paris in 1994. A month later, another demonstration took place in the South of France (Grenoble — not far from Clerc’s birthplace). (Canada demonstrated in Ontario, in 1994, too.) “Le Monde” said that the implanted Frenchman had suffered psychological problems because of the facial paralysis from the CI surgery in 1957. “Le Monde” said that CI experiment in France was abandoned in 1933 — following the appointment of Hitler as dictator in 1933.
Gallaudet’s research director may know the name of the first implantée.
On an aSIDE note:
Maybe you are not aware, but Congress has a hearing health committee (HHC) on which Senator Hillary Clinton serves. AGBell and a CI organisation are a member of the HHC. The goal of the HHC is to have the United States as THE leadership in the world with the best resoources for cochlear implant and hearing aids. Sounds familiar? Certainly so! The name is Capitalism! And it means “greed” with a biggest sign of a $ dollar, the best friend of Ayn Rand whose atlas we have to stop shrugging!
April 28th, 2008 at 4:10 pm
Hedor, I’m really lost at what you’re talking about. FYI I’m just as deaf as you are. I have no control over parents who want to implant their child. I encourage parents to get all information and be well informed. WE have no business telling parents what to do and hey, no body tells me how to raise my kid either. Same idea. And I’m not about to tell you how to raise yours!
April 28th, 2008 at 4:13 pm
Elizabeth in “Mishkazena in #25):
Yes, Alexander Graham Bell was experimenting
on CI in his New York laboratory in 1917,
according to “Silcion Valley” (1994). The
experiment was unfinished as he was distracted
with something else.
April 28th, 2008 at 4:19 pm
which one come first? Parent’s rights or baby’s rights? (curious)
April 28th, 2008 at 4:31 pm
My friend in the West was implanted when she was a teenager in 1980s. In the late 1990s, she was not happy with her CI and removed the processor. Then in the early 2000s, she needed to take a MRI test. The doctor could not proceed because of the magnet in her head. It is not that her insurance could not cover the expenses for the removal, but the surgeon told her that the magnet in her head installed in 1980s cannot be removed forever; otherwise, she would face some risks. Amongst the risks would be paralysis.
One should remember that CI is still experimenting. First, on older people (1950s-1980s). Secondly, on younger people (1990s-2000s). Thirdly, on toddlers (2000-2005). Finally, on babies aged between 0 and 12 months (2005 and beyond). The youngest are the luckiest
CI recepients.
April 28th, 2008 at 4:39 pm
That’s true, Jean B.
New posterity for the 21st century. The processor will be much smaller and smaller within 10 to 20 years from now……Make the surgeons to fix or remove them much easier.
Experiment, experiment, experiment….bla, bla, bla…..and go on.
April 28th, 2008 at 4:45 pm
Hey you guys need to realize that ci is curse! if you change ur mind dont want ci they wont remove ur ci for cover by insurance! only can put on that it! so if Deaf community became richer asl and empowerment to Deaf childern from Deaf adults then hearing will find our problem cause they dont want lose job! and scare that they cant reading our high level of ASL! they knew that we are more quitly in ASL than hearing’s quitly. that why they dont like us. they dont want us to be pride for Deaf culture! if get ci then why need be pride for Deaf Culture! Deaf Pride doesn’t need medical view! all is that you need to learn ASL!!! so we will have good interputer!
April 28th, 2008 at 4:57 pm
hmm, interesting point of view.
I was actually one of the ‘more’ experimental patients – I got my CI in the early 90s, at the age of six and I was prelingually deaf (and stone deaf at that). I don’t think my CI failed me at all.
I’m able to speak, I wouldn’t have been able to speak otherwise. I can talk on the phone with certian individuals. I still use ASL, interpreters and CART services.
Maybe my case is one of the more successful ones, but I defintely don’t think my CI was a waste and I’m glad the doctors took a chance on me. However, I do recognize that after the age of 4 or 5 (and I am being generous here), CI success is much more unpredictable, but to be honest, I don’t see the harm in trying. Then again, I had good parents who made sure I still had accommodations in the classroom and never pretended that I would suddenly become “hearing,” which I think was key to my success.
April 28th, 2008 at 6:26 pm
For comment #35
We can’t blame the parents since they only want to do what is the best for their deaf child, but we CAN educate them that they can choose CI and ASL both at the same time. I believe that it will bring them all a best benefit. If they know already about the deaf culture and sign language, they’ll probably not choose CI for their deaf child, only choose ASL and best education. It’s my opinion.
April 28th, 2008 at 7:22 pm
yes true, deb ann, some parents only want to do what is best for their deaf kids… however, there are other parents who are doing what is best for themselves. sad.
April 28th, 2008 at 7:33 pm
Professor Graeme Clark
“Graeme Clark believes all children should have the opportunity to hear their own parents’ voices.”
“That idea has driven him to provide hearing to more than 55,000 deaf people in more than 120 countries through his invention of a multi-channel cochlear ear implant.”
“Graeme was instrumental in getting Australian Government support to establish Cochlear Limited – an Australian biomedical business success story. Today, Cochlear supplies more than two thirds of the global market for bionic ears.”
https://sciencegrants.dest.gov.au/SciencePrize/Pages/Doc.aspx?name=previous_winners/PM2004Clark.htm
April 28th, 2008 at 8:00 pm
Jean Boutcher
Mishka Zena is right.
I learn about history of cochlear implants.
“Alessandro Volta was the first to stimulate the auditory system electrically, by connecting a battery of 30 or 40 ‘couples’ (approximately 50V) to two metal rods that were inserted into his ears.”
http://biomed.brown.edu/Courses/BI108/BI108_2001_Groups/Cochlear_Implants/history.html
April 28th, 2008 at 9:53 pm
So much wrong info… I will just say that Jean is wrong. It was always quite easy to remove the magnet if an MRI was needed. It’s right under the skin and only a small incision is needed to remove it.
April 28th, 2008 at 10:04 pm
ChrisH in #44:
Please re-read Elizabeth’s (Mishkazena’s)comment carefully and then re-read my comment
more carefully.
April 29th, 2008 at 7:26 am
Eek…the first person I thought of when I was reading this is Erick Ketchum (sp?).
I think it might be worth a try getting them together as a group to demand changes in the insurance policies to cover for the cost of removals.
They need to document everything too as evidences – such as psychologists, etc?
I am not aware of such advocacy, but I know there are several that are ready to battle with insurances for denials.
I plan to contact that advocacy group when I go for my 2nd implant as my insurance has already denied my request. That will come later, though, I’ve got too much on my plate right now.
Point is, there should be an advocacy group targeted for a specific purpose – in this case, getting the insurances to pay for their removals at NO cost.
I understand Erick is a very busy man now, but perhaps someone else could create an advocacy group focusing on this. It’d make enough noises.
It also would benefit for others in the future too – if they wanted theirs to be removed for various reasons and at no cost without so much trouble going through the process.
April 29th, 2008 at 7:36 am
http://www.hearingcenteronline.com/newsletter/may00d.shtml
THE FIRST COCHLEAR IMPLANT
(BIONIC EAR)
The first wearable single channel implants were implanted by Dr. William House, Dr. Blair Simmons and Dr. Robin Michelson during the 1970′s. On August 1, 1978, Professor Graeme Clark and his team from the University Department at the Royal Victorian Eye & Ear Hospital in Australia implanted the very first 10-channel cochlear implant.
The procedure was performed on 48 year old Rod Saunders who lost his hearing eighteen months prior due to a head injury that damaged his cochlea. This successful operation was a major step in hearing technology. It provided a new opportunity for the profoundly deaf who could not benefit from standard hearing aids. Cochlear implants became commercially available during the early 1980′s and in the past twenty years, they have improved in quality and sophistication.
—-
I had the opportunity to meet Rod Saunders in February 2007. He was then using a Nucleus 24 and so had updated technology. I’m not sure where the information comes from that a recipient of earlier technology cannot have the magnet removed. If I were the person, I’d seek another opinion. Rod Saunders was very happy with his CI and had no regrets. He talked about how his hearing had improved over the years as he received updated technology.
April 29th, 2008 at 9:38 am
Melissa, I am not sure what portion of the cochlear implants to be removed, but I think it involves the entire implants, not the magnetic part. I don’t know why some doctors refused. I was surprised when I heard these complaints.
The other issue is the money for the surgery. Some insurance companies refuse to cover this procedure.
The handling of the cochlear implant cases nowadays have improved ever since then.
April 29th, 2008 at 9:43 am
Anon, #40, you are one of the more fortunates. You were young enough to benefit from the cochlear implants. I would theorize the deaf kids who already responsive to the oral method would have better success rate with cochlear implants.
Here I was talking about deaf kids with no speech comprehension around the age of 7, 8, 9 and older. Nowadays the surgeons would be more conservative with these kids, but not back then.
You mentioned that you see no harm in trying. At the beginning, that’s what I thought, too, but I realized that not everybody feels this way. Some Deaf people experienced the feeling of violation.
April 29th, 2008 at 10:00 am
MZ:“Some Deaf people experienced the feeling of violation.”
Those people are the ones why the Deaf Culture is roaring about because they come to them and share those experiences.
That’s why it’s important that they are heard and why there is so much resistance and anger.
It’s important that they are acknowledged and they do need to be taken care of.
If we don’t, then it’s just as bad as AGBell not apologizing for the damages they’ve left with the ban of ASL and their strong views towards the culturally deaf, making peace with the suffered because the anger is still being carried from generation to generation.
It is going to get too much for AGBell with the power of internet and they are going to have to eventually apologize.
Oh, when pigs will fly! Ha…
April 29th, 2008 at 10:07 am
Iammine,
I wasn’t talking about Erick. He had no interest in having his cochlear implant removed because of the risks involved.
Most of the deaf older kids didn’t talk about removing their cochlear implants, just that their cochlear implants weren’t productive in helping them understand speech and they ended turning them off. But some were bitter about their experiences. Sad
April 29th, 2008 at 10:09 am
Amen to your last comment, Iammine.
Perhaps this post will help others understand better the extent of anger and resistance in Deaf Community. It doesn’t help that these unfortunate cases are buried and systematically denied by the c.i. prononents, surgeons, oral educators, and others.
After all, anger doesn’t come out of a vacuum.
April 29th, 2008 at 10:18 am
Yeah, I know you weren’t talking about Erick – but he was the first I thought of, though.
I do now recall that he didn’t want it removed. Yikes.
One would think that if it’s been tried and if it doesn’t work, then okay – go for ASL. For me, it’s like uh oh…
It is sad that some were bitter about their experiences.
I know some don’t agree with me on this but this is why ASL should be the foundation before anything else is added. Where such programs like Deaf Mentoring and any other groups in assisting the parents of deaf children if they choose CI.
I am not going to turn this into another debatable topic because we know there are different opinions.
I have met one woman from Canada who fought to have her CI removed and she won. She was really relieved to see it gone. This was at a meeting where there was pro/con CI stories. Another woman, a friend of hers, spoke about her CI and she was happy with it. They both were implanted at about a year apart or so.
I think it’s very important for parents to keep their minds open to all of those information.
April 29th, 2008 at 1:46 pm
Frankly I don’t understand the ‘Deaf’ resistance to CI’s, and it is certainly no ‘fault’ of those implanted, whether they decide to have them, or their parents decided. Skullchick’s vblog said it how it is, she was a damned good signer and deaf person too, and it is about time the ‘community’ (I am reluctant to use that word or term), started accepting what is fact and inevitable anyway.
To suggest deaf are ‘experiments’ etc is not being fair. Every medical advance we have EVER had started by ‘experiment’ During WW1 many soldiers participated in the development of penicillin, some died. Should the millions of lives saved afterwards not justify the chances taken ?
Should the ‘experiments’ done to save premature babies dieing not have taken place ? Should ‘eperiments to develop hearing aids many deaf use daily, NOT have taken place or been developed either ?
As we saw with skullchick the CI made NO difference to her as a a deaf person or a signing one, it was how she was perceived by OTHER deaf that caused the problem, who could only see what was ON her head, and not the person with it…
When I see a deaf person, it makes no difference if they sign or not wear an aid or not lip-read or not, oralise or not, see the person, and so should everyone else… these silly divides are ruining the entire community, who cannot seem to move on or forward until they resolve this issue.
Enough….
April 29th, 2008 at 2:08 pm
Robbie in #45:
Your comment was not on the blog prior to my going to bed at 12 midnight. I posted my comment #46 under ChrisH’s comment at 11:04p (10:04p in Elizbaeth Gillespie’s time). Yours appeared this morning. Nevertheless, I am sending a copy of your comment to my friend. I should hear from her back thereafter.
April 29th, 2008 at 5:35 pm
#36 Jerome Cain
Parent’s right or baby’s rights???
*Parent’s right*
April 29th, 2008 at 5:45 pm
My response for #57
What about baby’s or child’s rights?? Think about it.
April 29th, 2008 at 7:12 pm
The first Cochlear Implantee was Rod Saunders. He lost his hearing suddenly due to an accident. He felt he had nothing to lose. At first the procedure didn’t result in much clear speech and the first processor was huge (computer’s in 1978 fulled whole rooms!). However, with improved processing and speech coding technologies and Cochlear’s promise of backwards compatability (ie so Rod didn’t have to be reimplanted but could still use new technologies in processors) by the time Rod had excellent success with his implant. He was able to use a phone with the latest processor which he hadn’t been able to do with earlier models.
April 29th, 2008 at 9:22 pm
I have to second what MM said in #55. The deaf were no more guinea pigs with the first CIs than any other group of patients participating in clinical trials. Sometimes clinical trials work, as they did for my older daughter Rachel when she got her CI in 1989 as part of the FDA clinical trials, and sometimes they don’t. However, participating in a trial is exactly that, a trial.
Just yesterday there was a major announcement of the results of a phase I clinical trial for Leber’s congenital amaurosis, the most severe form of RP. Patients went into Phase I clinical trials which were seeking to determine only safety, and, to the surprise of all involved, ended up regaining a significant amount of usable vision. Clinical trials are not always a bad thing. Those who are willing to participate are doing a service for others.
April 29th, 2008 at 9:39 pm
MM, your comparisons are poor. These children didn’t volunteer for the experiments, nor were they dealing with fatal conditions. A hearing aid cannot be compared to a surgical procedure.
Unlike several here, I am not quick to dismiss the feelings of some Deaf victims whose cochlear implants didn’t work so well. Some didn’t mind the trials. However, others felt like guinea pigs, being experimented and paying a price afterwards. Some resented these experiments, feeling bitter. I can understand why, especially if they were damaged consequentially. Some had to seek therapy years later to deal with the fallout from these failed treatments.
I am starting to see why the Deaf victims and the Deaf Community remain angry… if they are getting these dismissive attitudes, minimizing the damages these Deaf victims experienced. The lack of compassion astounds me. We are talking about humans, not animals…..
April 30th, 2008 at 7:59 am
They don’t care that Deaf people suffered.
April 30th, 2008 at 12:03 pm
It seems odd surgeons and audiologists were “unaware of the plasticity of childrens’ brains”. Educators have always known of the critical age for language development from the 50’s so it would have to be extremely shortsighted for surgeons to ignore that.
This does NOT surprise me… too many doctors are blindsided by honest, uncritical, unconsidered belief that language is HEARING and SPOKEN and therefore with the “critical communication” window, they don’t even think about ASL as being as competent as any language to fill the need. So *naturally* they failed to make this connection.
I see it *all* the time, drives me nuts.
April 30th, 2008 at 9:29 pm
People don’t seem to grasp that in many cases, the parents wanted the implant surgery, so the implantees were doubly victimized: having surgery they may not actually have desired, in order to please parents who were manipulated by the medical establishemt into thinking CI would be a panacea, Hippocratic Oath notwithstanding.
May 1st, 2008 at 11:09 am
When Rachel was implanted as part of the FDA clinical trials, the medical professionals made no promises. In fact, they told us that the most they could guarantee was that she would hear environmental sounds. They would not promise us that she would be able to understand speech through her hearing.
I get greatly annoyed with this portrayal by the deaf community of the evil medical professionals, including the statements that they are all in it only for the money. Nothing could be further from the truth. We have worked with three different CI centers, two A-V centers and one private Cert. AVT over the past 21 years, and every single professional I’ve encountered has been in the field out of love and caring for the children. They have all been warm and wonderful to both my girls and my husband and me. Furthermore, none of them are getting rich off of CIs and AVT. In fact, the opposite is true. Many centers have CI programs that are operating at a loss because insurance and Medicaid reimbursements are so low. When Rachel was reimplanted and simultaneously bilaterally implanted during an 8 hour surgery, the surgeon’s bill was $4000. Our insurance company only paid him $1800 for the bill.
During the clinical trials for the CIs back in the 1980s, there were no medical professionals “manipulating” parents. They were excited by the new promise of CIs but told parents like me very realistically what was involved and offered us no guarantees. Some of us were then willing to take a leap of faith, and, in our case, I’m so very glad that we did.
Regardless of whether we agree on methodologies, CIs, etc., the one thing that has to stop is the unwarranted criticism of professionals. If they are working with the children, then they are not in it for the money but, rather, are in it because they care and want to make a difference in the children’s lives. You can choose to disagree as to how they are going about it, but slandering their motives is immature and ignorant.
May 1st, 2008 at 11:37 am
Melissa,
Some parents have the same experiences like yours, being fully informed what they can expect realistically from the cochlear implants their deaf children.
However, from talking to others, I discovered that not all doctors were ethical in describing the limitations of cochlear implants, especially in 1980′s and 1990′s. These doctors painted a rosy picture which wasn’t realistic, leading parents and their children to have unrealistically high expectations.
Hence the title.
May 1st, 2008 at 11:43 am
I understand, Melissa.
But we were talking about how some really suffered from it and what bothered me is how some dismissed them.
Rather than trying to come up with a solution to help them out, people jumped in and saying well I am successful back then… MZ is aware of some successful CI users and I know of one who was also one of the early implantees (she was older with progressive hearing loss, though) and she is happy with it. She eventually upgraded to newer models and she loves it.
However, this does not mean we should ignore those who really had suffered and they need help.
Do you have any suggestions?
May 1st, 2008 at 12:32 pm
My suggestions would depend upon whether or not they still want to try to use their CI. If they do, then an audiologist who is experienced in the particular brand of implant that the person has is critical. Also, early on none of the professionals knew what to do for those implanted later in terms of auditory training. However, this is a growing field, and I have read many adults on the adult listservs talking about what they are doing to learn to use their CI hearing. While these people who were implanted at later ages will likely never achieve the level of auditory comprehension that those implanted as babies and toddlers do, they can still improve if they desire to. Many audiologists as well as the implant manufacturers now have resources for these people, whereas 20 years ago what was needed was not understood, and, even when it was, the resources weren’t there.
If the user no longer wants to use the CI, then I would just take off the processor. If they have found their place in life in the deaf culture, then that is what has worked for them.
I think that the issue is what the expectations are. If those implanted at older ages understand that they are not going to be able to comprehend speech through their CI hearing alone but still want to benefit, then most can. What is different now is that expectations for specific situations are better understood. So, I would say to start with realistic expectations and, if the user ends up with more, then great, but if they meet realistic expectations, then that is also fine.
May 1st, 2008 at 12:52 pm
Yes, Melissa…but what about those who have been affected by the implant itself?
They do feel it and do not want it there anymore. It bothers them and they want it out. Some even have health issues because of it.
I didn’t go into details on that one CI woman I explained in one of my comments up there.
There were witnesses with her at the meeting including interpreters who have worked with her personally.
She explained how ill she was with her implant and how she never felt like this prior to her CI and tried to have her doctor take it out. He insisted on replacing it with a new one and she said she didn’t want it. He then went on to say that her illness had nothing to do with the implant, that it was something else. She fought her doctor and about a year later, they finally caved in.
They removed it and she regained her health 100 percent.
Her friend, as I’ve mentioned up there, has a CI and enjoys it very much. Those two are still close friends.
This doctor she had was pushy and the other one whose doctor was more neutral.
There are different types of doctors that MZ is referring to.
That’s why I offered a solution of an advocacy group for those who really want them removed and doctors/insurance should honor their requests and cover for those costs.
May 1st, 2008 at 3:28 pm
[...] unceremonious eviction from Deaf Culture, she was back at a Deafhood/DeafRead editor’s blog, equating CIs with AG Bell Foundation because the best way solidify your status on DeafSide is to simply reject cochlear implants – even [...]
May 10th, 2008 at 5:39 pm
you deaf guys depend on hearing for making living duhh!!! how about depend on Deaf to make living? seem no empowerment from Deaf adults to make living? why depend on hearing for make living? where is our Deaf Pride!. so hearing ppls have eyes can learn our Language and join our Pride. we can’t join their pride like they have!. who’s have rights? Parent or Deaf child? how about Deaf adults? Parent only have right for 18 years most of them not know sign language and then why they can’t learn sign language and have rights to make us to learn speech? we live longer than parent’s rights. most of them want to be Deaf Pride. so think about your future who is rights and pride? live longer than 18 yrs! so you don’t want live short? so which best for your live? it your choice which pride for Deaf or a little h?
June 27th, 2008 at 5:55 pm
people died when vaccines were first put in place, when heart surgery was first performed, when the first antibiotics were tried and the list goes on and on and on. the people who were implanted agreed to be implanted and knew all the risks. my daughter was one of them. she was 11 and could not speak … now she’s 22 and can because of her implant. she can go into the deaf world when she wants and out intp the hearing world when she wants or needs to. interestlingly enough, her deaf friends rely on her communication skills in restaurants, in stores at the bank etc. glasses aren’t a sin. braces aren’t a sin….ignorance is.
June 27th, 2008 at 7:43 pm
Sunny, your daughter was one of the fortunate group. I am glad it worked for her.
I am not sure what you mean by ignorance. This is an informative blog covering both the positive and negative aspects of a device.