Hearing parents have often asked me things like, "Why is the Deaf community so against cochlear implants?","Why don't they want children to hear?" and "Don't they want children to have access to the best opportunities or to 'be happy'?" Often the stricter Deaf community members' stance on cochlear implants appears to be a reactionary one, a movement resulting from feeling threatened. But in reality, I think the Deaf community's position is concerned is less with the basic technology and use of cochlear implants and more with educational and medical professionals' and parents of deaf children's view on cochlear implants as a "cure for deafness."
Of course, cultural concerns do strike an emotional chord with the community; as more children are implanted and mainstreamed, deaf schools across the country are closing, preventing deaf children from being exposed to their peers and Deaf culture, and therefore robbed of the opportunity to be involved in the Deaf community at all. The viewpoint that deafness is not a disability but a way of life, the right to choose, the importance of social interaction with like peers, and the extinction of ASL as a language are all important social concerns with outcomes contingent upon the proliferation of implantation. However, the biggest issue at hand is the well-being of the child. This is where the real problem with blanket recommendations for cochlear implantation lies.
Here is an example of what speech and music sound like to the average cochlear implant user:
Everyone is different, but according to the House Research Institute (formerly the House Ear Institute), the average user is in the 8 channel range. Additionally, these samples contain slow, clear speech and no background noise, which are optimal, but not always attainable listening conditions. The success of processing and understanding sound (and developing verbal language in this manner) is even lower for children with cognitive impairments or other disabilities.
To listen to more speech and music simulations from the HRI, click here.
Cochlear implants do help deaf people hear. But I imagine most hearing people would find notable differences between natural speech and music and the sound picked up and processed by implants. This is why it's important that cochlear implants be used as a tool to aid in communication, not as a way to fix deafness. A child who is given an implant and not taught sign language will still not have full access to language. And without fully developed linguistic abilities, he or she will almost always fall behind in other areas of academic and social development.
So in answer to the question, "Don't Deaf people want children to have access to the best opportunities?" I believe the answer is a resounding yes. Cochlear implants are not bad or evil, but they are not a cure-all, and they do become problematic when used as such. Learning language solely through the partial information provided by a cochlear implant can be a frustrating process. A deaf child should have full access to language and all the opportunities that come along with strong communication skills. This means using a combination of technology and ASL and whatever means necessary to give a child the education he or she deserves. A forced dependence on technology and a strict audio-verbal/ oral curriculum can be just as limiting as strict oralist professionals have deemed ASL-centric education to be.
My daughter has two cochlear implants and she hears so much better than that demonstration. She can hear the differences between instruments, and is able to discriminate all sounds in speech. Most children do not have 4-8 channels. ALL cochlear implants have between 16 and 22, and with today's speech processing strategies, up to 120!
ReplyDeleteYour site appears to want to actually improve the lives of deaf children, so please seek out better information about cochlear implants. My daughter, and nearly all children implanted in childhood, are not learning language through "partial information" and certainly early implanted children are NOT learning language through a "slow, frustrating process". The average child implanted before age 2 in completely caught up and has age appropriate language by age 5, having only once a week therapy!
Miss Kat's Parents-
ReplyDeleteThanks for reading. It's great to hear that your daughter is doing so well with her implants. To reiterate, we here at Redeafined think cochlear implants are an invaluable technology, and the decision to implant a child is a personal one that belongs to each child's parents.
The statistics about channels of cochlear implants, as well as the simulations of what implants sound like, come from the House Research Institute, a hospital that focuses specifically on hearing research and also performs cochlear implant surgery. The 8 channel stat, also from HRI, refers to the average active channels for cochlear implant users; as you pointed out in our reading level post, statistics and success rates for deaf children cover a wide range of abilities and scenarios. Technological and scientific advancements produce important resources for deaf children, we simply advocate that, since cochlear implants have yet to replicate normal hearing (as cochlear implant manufacturers will be the first to note), that exploring and utilizing all communication options is a good idea.
I still disagree with the "8 channels". Perhaps at some point that was true, but it simply isn't today. Having only 8 active electrodes today would be cause for re-implantation.
ReplyDeleteHere is a simulation with 22 electrodes: http://www.pbs.org/saf/1205/features/Interactive/audiofiles/channel22.htm
And here is a link to AB and their simulations using the most recent speech processing technology (you'll have to scroll down a touch and then on the right it says "select a demo", click on one and it will pop up)
http://www.advancedbionics.com/com/en/products/sound_processing/hires_fidelity_120.html#content_title_74d4
If you really intend to be balanced, you would use the most up to date information (which is not 8 channels).
And lastly, you say that my daughter is "doing great with her implants". People use that line to dismiss. My daughter isn't doing "great", she is actually extremely late implanted and considered a less than ideal user. She is far from a superstar. She gets good benefit, but certainly nothing extraordinary. Every single child I have met in the last 5 years who was implanted before age 4 (except 2) and there have been literally hundreds, has gotten access to all sounds of spoken language through their implant and do not have this "partial access" you claim.
Have you gone to oral and mainstream schools and met these children? Have you spoken with them? How about the pioneers of childhood implantation who are now adults? Have you asked them about the "slow frustrating process" and "partial access" you discuss?
(BTW, yes, in the past learning spoken language through hearing aids and lipreading was exactly what you described. I believe oral education without adequate access to spoken language is cruel and tantamount to abuse. But that is NOT what is happening today. These kids don't lipread, they don't guess, they HEAR. And the technology allows that to happen.)
Dear Miss. Kat's Parents,
ReplyDeleteWhile we value factual veracity, since there isn’t a single correct answer to the question of deaf education, our opinions are obviously involved in the construction of these pieces, and opinions can differ without being definitively right or wrong. You repeatedly accuse us of being unbalanced, and yet you've posted a link to a 120 channel implant which is not even approved for pediatric use in the United States, (as it says on the page to which you've linked); so, with regard to the pertinent discussion of language acquisition for young children, unless you're advocating that everyone take their child to Panama for surgery, let's take that off the table until it's actually available. If we were truly being unbalanced we could simply delete your comments, but we prefer to keep an open dialogue.
If you'd watched the simulations provided in our clip, you'd see they go up to twenty channels. As for the "average 8 active channels" statistic, your agreement has no bearing on whether or not it remains a statistic, the veracity of which should be argued about with the research hospital to which it belongs. Again, an average suggests that some people have access to many more channels and some have access to less. To quote from your PBS article link, "There is great variation in how much benefit patients get from the implant. Some of the variation has to do with age at time of implant, age at time of deafening, and other factors. But most of the variation cannot be predicted at all...It turns out that hearing, particularly when it comes to speech, has less to do with the ear than most researchers assumed. Without a more complete understanding of how the brain acquires and processes language, who and when it's best to implant remains up for debate in the scientific community."
To your question about whether or not I personally have interacted with oral deaf children, the answer is yes; as an itinerant special education instructor I worked with deaf children in mainstream schools, many of whom had implants. These children were implanted as babies, toddlers, and a few as elementary-aged. I also know several deaf adults implanted in childhood. Many of these children and adults did very well and are able to discriminate sounds, listen to spoken conversation, and speak clearly. And some of them aren't.
To reiterate, cochlear implants do help children hear, and they’re a valuable technology. But they are not perfect. While you take issue with our use of the word "partial," until cochlear implants (or some other medical advancement, most likely stem cell science) cure deafness 100%, sound processed through a cochlear implant will remain incomplete. Until it's perfect it's imperfect. Your statement that children with implants can access speech and language is true and we're not disagreeing with you. We simply feel that touting a cochlear implant as a perfect replication of normal hearing/cure-all for deafness is misleading. Many feel that deaf children can get "enough" from utilizing hearing technology; we want more than enough. Cochlear implants and sign language don’t have to be mutually exclusive. Nothing bad can come from bilingualism (in fact, science overwhelmingly proves its benefits for all children, deaf and hearing) and we are of the opinion that more language(s) is better. To quote Rachel Coleman, founder of Signing Time and mother of a deaf daughter with a cochlear implant, there are many reasons to keep using sign language alongside technology: "sign language will never fail, the batteries will not die, you can use it while swimming, you never have to “turn it on” or struggle to locate it in the middle of the night. Sign language can get soaking wet and it’s always at your fingertips." Deaf children can and should have the best of both worlds. Stay tuned for a guest post from Ms. Coleman next week!
The HiFidelity 120 processing strategy has not been FDA approved for children, but I assure you it is being used by children in the US everyday. My daughter has been using that program since her activation 3 1/2 years ago, along with nearly every child who wears an Advanced Bionics device. Because you are not familiar with implants in children, you did not know that. You, again, jumped to conclusions.
ReplyDeleteI would love to see the date on the data you have that shows that the average CI user has access to 8 channels. You have stated it is from House, but you didn't site or link to it (at least that I saw, if I am wrong, I apologize).
As for the idea that "most of the variation cannot be predicted at all", that is far from true. The latest research has shown that they can control for nearly all the differences through age of implantation, maternal language level, and early invention.
And again, I, and no one I have ever met, has made a cochlear implant out to be a cure for deafness. I clearly stated that my problem was with the idea of partial access to language. Children implanted young nearly always have access to ALL sounds of speech. How does that then translate to "partial access". Are they Hearing? No. But do they hear? Yes!
My child happens to also use ASL. I propose that ASL is great for all children with a hearing loss. Is it necessary? Depends on the child. Is a parent irresponsible if they chose to not use ASL? Not at all. Again, it depends on the child. (The question about whether or not something "bad" can come from bilingualism is not something I will address here because it is far too complicated.)
As I said in my original comment, I don't believe you are being unbiased about CIs. The language that you are using is far too negative and betrays your actual view.
I'm sorry I misunderstood your processing link; I must have read the site wrong and will go back and take another look. And, while having worked professionally with implanted children I would not consider myself completely unfamiliar, at least with the day-to-day aspects of the technology's functionality, you are right to say that I am far from being an expert. That's why I rely on the statements made by specialists-- researchers, scientists, and surgeons. The House Research Institute site, which lists the statistic you hold in contention, has been updated as of September 2011. As for the idea that "most of the variation cannot be predicted at all," this is a quote made by professionals as taken direct from your own link in your previous comment.
ReplyDeleteWith regard the accusation of bias: while we do use facts to back up our opinions, we still have a point-of-view, and never claimed total neutrality. Our goal (as stated in the About section) is rather to "restore the balance of information surrounding deaf issues." Websites and media outlets uphold cochlear implants for their amazing technological advances, and rightfully so, but relegate their failures, (the recall of Cochear's entire Nucleus 5 line for inexplicable malfunction and failure last year, for example) to the business pages in the form of falling stock prices. It is chic to teach sign language to hearing babies, while parents of deaf children are often instructed not to sign.(Two of many examples of parents being instructed not to sign with their children, or in the first link, a child being denied speech therapy unless the child's mother agrees to consider an implant: http://caberger.tumblr.com/post/25053364491/angry http://www.rachelcoleman.com/2011/09/07/my-two-cents-cochlear-implants/) It is this bias of information we are seeking to address.
I'm glad that neither you nor people you know have made implants out to be cures for deafness. We here at Redeafined have unfortunately met people--medical professionals included-- that do mislead people in this manner, hence the creation of this site. I'm also happy you've chosen to use ASL with your daughter; however, if you hadn't signed with her, that would be none of my business. This blog was not meant to be a personal affront on you or your child, and I hope we can come to the amicable conclusion of this discussion and agree to hold and respect one another's differing viewpoints.