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Am I Hiding? No…

February 7th, 2008 by | Tags: , , | 40 Comments »

Some people say that I’m not addressing the failure issues of cochlear implants while I speak about the positive aspects. For example, one commenter said to me “But you all are not addressing the issues of the ones who experienced CI failures…”

If you had navigated my site thoroughly, you would have found at least one page about my cochlear implant failure experiences. Here and Here. Plus, under the “Life” section, I clearly mentioned the word “CI failure.” I went through two CI failures in one year. Instead of complaining and being miserable about my CI failures, I researched WHY the failures happened and how can failures be prevented in the future. My first CI failure happened because the silicone seal between the electrode array and the receiver ruptured. My first implant was one of the very early ones, and Cochlear™ had already identified the weakness in this area and corrected the problem many years before my first failure occurred. Neither Cochlear™ nor my surgeon knows the cause of my second CI failure. The explanted internal part of my implant was sent to Cochlear™’s research group, and they were still unable to find the cause. However, they continue to research the causes of failures as they strive to improve their products and the lives of deaf people who want to hear with cochlear implants. So, like I said, instead of complaining that cochlear implants do have failures, research why they happen and learn how they can be improved and prevented. The fact is that failure rates for CIs overall are very low. For my brand, Cochlear™, it’s about 1%, and there are many people with 15 to 20 – year old Nucleus 22s that are still going strong.

40 Comments

jodi

February 7, 2008 at 8:49 am

Excellent post! Jodi

Elsie

February 7, 2008 at 9:10 am

Hi!

I took the liberty of going through your site. Very informative! My partner has a CI and it failed her when she was about six years old. Her parents eventually learned how to sign.

I do have a question or you may look at it as a concern. Do you feel you are not normal?

Because I found this excerpt written by you,

“What did you guys think?? I’m not going to give you my personal opinion as a deaf person until after I get opinions from normal hearing people. So, PLEASE comment! I’m just doing a little research and I’ll explain after you give me your input!”

One word struck a chord. Normal. “…normal hearing people.”

I do not think anyone is normal, nevertheless they may try and act like it.

I just worry a bit about your subconscious thinking that may have been instilled from the medical perspectives from your doctors, surgeons, and parents that you are not up to the par to the other “normal hearing people.”

Just something to think about.

Regards,

Elsie

Rachel

February 7, 2008 at 9:23 am

Elsie,

Did you read the comments under the post about the Pepsi commercial? There was a discussion about the word “normal”:

http://cochlearimplantonline.com/blog/?p=33

Here’s my comment that I posted under that entry:

“For those of you who are misunderstanding “normal hearing people,” the word normal goes with my friends’ hearing and that I don’t have what is considered normal hearing. To refer to my friends as my hearing friends would be inaccurate because I am hearing with my CIs. So, in other words, the quote “normal hearing people” means ‘people with normal hearing.’”

February 7, 2008 at 9:47 am

Hi Rachel,

In your definition of “normal”, Deaf people are perfectly normal. I am normal ASL-Deaf person. I am not product of hearing. I never was hearing, never am, never will. It’s same thing with Black people. Black people are normal. Black people are not product of White. They never were white, never are, and never will. :o)

Aidan

Rachel

February 7, 2008 at 9:55 am

Aidan Mack,

Did you understand that I’m not applying the word “normal” to people’s traits? “Normal hearing people” or “people with normal hearing” means people’s ears function well. That means that their hair cells and/or their cochlea work well, and they do not need any medical devices to help them hear.

Also, in my comment #29 under the Pepsi commercial post, I said: “We’re all normal regardless of our traits. ;) I was using the word ‘normal’ to refer to normal hearing. In other words, the quote “normal hearing people” means ‘people with normal hearing.’”

Thus, I understand that EVERYBODY is normal.

Lena

February 7, 2008 at 11:36 am

Rachel,
I think it would be better if you used a hyphen to describe normal-hearing versus someone who has a hearing loss. It makes it clear that you are talking about the hearing not being normal, and not the person. :-)

February 7, 2008 at 11:55 am

Hi Rachel,

We all know you’re normal! LOL I use the same terminology to differentiate between people with hearing which is considered normal and those who have a hearing loss.

No need to explain! :)

Tara

February 7, 2008 at 11:56 am

I think when the Deaf community mentions “cochlear implant failures” they are referring to the acquistion of spoken/written language rather than the device itself. Unfortunately, I have seen many young children with “failed” cochlear implants, some even with bilateral implants, who come into our deaf school with almost no language. It is devastating to see and I would never wish that on any child. I am so glad to see that you and your sister are so successful with your implants and language development. What a blessing. For others, they are not afforded the same blessing. Some of them simply do not benefit from the implant and their parents do not realize this until it is “too late.” Of course, those children make HUGE strides in language after they learn ASL and apply that to learning English but since the window of opportunity for language development (ages 0-3) has passed, they will probably never be at par with others. This is why I strongly advocate ASL for all deaf children, with or without implants because this ia a fail-proof method to ensure that every deaf child has full access to language. Even one language “failure” should never be accepted. By the way, I use the word “failure” lightly because I know how painful it is to many deaf adults who were labeled “oral failures” when in fact, it as the oral system that failed them. I’m not saying you need to post those stories on your blog- it is your blog after all- but I just wanted to give you another perspective.

K.L.

February 7, 2008 at 11:57 am

It is so amazing to me how almost every discussion ends up hanging up on specific words or labels. Huh. When people ask about my daughter’s implant, I generally tell them that she is hearing impaired and that she has a cochlear implant that helps her hear. I tried saying she was deaf, but even “hearing” people don’t always hear that well. They would look at me in horror and ask She is near death? They kept misunderstanding deaf for death. Now I find out that Deaf people don’t like the term “hearing impaired”. Can’t win.

K.L.

February 7, 2008 at 12:10 pm

Hi Tara,
It is extremely important for people to be well educated about the strengths AND weaknesses of the implant. I find that many of the “failures” occur because of misapplication of the implant or misunderstanding of its abilities. For instance: Like you said, language acquisition (and general brain development) occurs between birth and 3. That is the same window for the auditory center of the brain to develop. If there were a way to compare the exact same person changing only the age of implant, you would find that if they were implanted prior to age 1, they would be highly successful implant users because the implant could help get the auditory center of the brain fully developed. If that same person were implanted at age 2, you would see the beginnings of a “deaf” accent, and if implanted at age 3, you may start seeing an incomplete acquisition of spoken English. That same child, implanted at age 6 would almost certainly need ASL or some other visual language. Their brain is already no longer capable of fully understanding verbal language. By age 10, it is questionable how much good the implant will do, and even if the child will be able to tolerate sound.

The above example is for a profoundly deaf child, who would otherwise not have any hearing. It is also not exact, because until the child is implanted, and then immersed into an auditory rich envoronment, there is no way to know fully how well that child will respond. Some 3 year old implant kiddos do great. Some don’t. But I have yet to see a 1 year old implanted kiddo that hasn’t done well.

The implant certainly has limitations. And yes, some kids just don’t get verbal language as well as others. It is imperative that parents be very proactive with their kids to make sure that they are getting language in some form or another. And if one methodology doesn’t work, they need to reevaulate what they are doing.

anna s

February 7, 2008 at 12:46 pm

The Deafcommunity views the term “CI failure” as a child who does not succeed orally. Your view of CI failure has to do with the device itself.

Different cultural perspectives here. (:

I HATE the Deaf community of the term “CI Failure” Poor the children! They are not falures for chrissakes! Their brains are wired for visual communication due to several factors. They shouldbe seen as visual learners.

My child is NOT a CI failure. He is more of a visual/auditory learner. He benefits from TOTAL COMMUNICATION.

Rachel, hope my comment alongwith the others above makes it clear about the definition of CI FAILURE?

Who cares about the device that fails. Replace it. No biggie, from my perspective. But a child who is struggling orally without any sign support, I am gingto put my foot down and say NO NO, give the child some visual communication and hey, Deafies, that kid is NOT a CI failure. He thrives with sign support or just ASL only with occassional speech pull out.

Thanks for your time reading my comment. (:

Hearing Mom

February 7, 2008 at 12:54 pm

Tara,
I have heard the same thing from many other people who work with Deaf and Hard of Hearing Children. There is a fall-out happening for CI users. That is why I agree with you that all deaf children should have access to ASL from the start. Research has proven over and over that it does not and will not impede upon the rate in which deaf children with CIs learn to speak. Parents need to be sure that they are providing every opportunity to their child to have full language access.

K.L.,
I am glad you said “And if one methodology doesn’t work, they need to reevaluate what they are doing.” I absolutely agree. And parents need to be fully aware of all options and have access to Deaf Mentors to allow for full knowledge of what it is to be Deaf or Hard of Hearing and what can be expected prior to making life-long choices for their children.
The appropriate term is Deaf or Hard of Hearing and not Hearing Impaired. Impaired implies a defect and has a negative connotation. Once you get used to saying Deaf it will be easy. For those hearing people that say “death” that is only their ignorance showing up. Our job is to educate them. I have been doing this for 22 years now. I love the word “Deaf”. It is something to be proud of. It connects people together. Embrace it and it will embrace you.

anna s

February 7, 2008 at 12:56 pm

K.L. Your comment hits the bullseye. The age of implantation largely dictates whether the child is more of a visual or an auditory learner. But that shouldnt be a blanket statement. We just received a 4 year old child from our local private oral school. The child was implanted at one and half. She is significantly language delayed and is now in a TC classroom in our DHH program. The child, tested, to show normal intelligence. The parents speak a different language otherthan English. English during the day and the other language in the home . . could it be confusing to a CI child even if implanted early?

How I wish she was exposed to sign language at time when her hearing loss was identified, she would not be so delayed languagewise by now. If she is speaking orally and able of listening without visual cues, fade out sign language.

Sign language should be seen as an insurance to prevent kids from possible serious language delays which would carry over into adulthood.

Oh boy. I think I need a cold shower to cool off. Rachel, keep blogging away! Good commenters here too!

February 7, 2008 at 12:59 pm

If you have hearing aid, or C.I., or oralism, or deaf(without hearing aid or C.I.)then you are a deaf person. Just like black and white people! ASL is the key that is your visual communication because your ear and mouth may be out of order, some don’t. If you can talk thru your mouth then wonderful….if you can hear with C.I. or hearing aid then wonderful. Some deaf don’t! I can’t. And you with success with C.I. or hearing aid that helps you almost 100 percent as a hearing person that have no repect to those deaf who can’t. Obvouisly you don’t care for the ASL period just like hearing people do. They don’t need to sign ASL because they don’t want to. Meaning you are not truly deaf person but a very confusing person! One of the biggest question to think about CAN YOU GET INVOLVED THE MEETING WITH ALL THE HEARING PEOPLE OR DEAF PEOPLE WITHOUT YOUR ASL SKILL? NOT! I can get involved with hearing people meeting with the help of interpreter and I can do it with ASL at deaf people meeting. You can’t! Prove it to me atleast you are “hearing”! Hope it makes sense.

K.L.

February 7, 2008 at 1:40 pm

Hi Anna,
Since I do not know what the home support was, it is hard to say, but my guess is that the dual languages didn’t help any. I know that it takes intense verbal therapy to get the auditory pathways working well. We used Signing Exact English with our daughter so it would be easier to speak and sign the same words. But with or without signing, if they don’t have a TON of verbal one-on-one, then the brain just won’t be able to make as much sense of sound. I have no idea of how much speech therapy she got, or what they did at home, but it sounds like some piece of the puzzle was certainly missing. Its also possible the girl didn’t get a good map. Again, without direct knowledge, I’m just throwing out ideas.

K.L.

February 7, 2008 at 1:44 pm

Ummm, Steve, interpreters work both ways.

John Critser

February 7, 2008 at 2:01 pm

Rachel, hyphen or not, the word “normal” should never be used, because others can misunderstand. Not worth the storm that follows. We know what hearing people are, that they can hear, and it is good enough.

Secondly, CI failures- we don’t mean devices. We are talking in two different ways:

1. Side effects from CI surgery- imbalance (vertigo), severe or persistent headaches, vomiting, partial facial paralysis, eye twitching, meningitis, etc.

2. Failure to successfully acquire literary skills (reading, writing) and other language skills, and failure to speak the way hearing people do with perfect speech, without any speech impediment of any sort.

Those are the CI failures we are interested in learning about.

K.L.

February 7, 2008 at 2:20 pm

Hi John,
What if she doesn’t know anyone who has those problems? Why is it her responsibility to track down and publish those stories?

Here is the thing. Parents told their stories. We were told that deaf CI needed to tell their story directly. So she did. She got blasted. She was told that she is only one story. Did she know any other CI young adults who have had implants since childhood? Yes. She asked her friends to tell their stories. She is now publishing those stories. So now the success stories aren’t enough. You seem to only want the failures. It almost seems like you are just looking for support for why the CI is bad. You have to admit that here on DeafRead, there is a pretty negative feeling about the CI. Negative stories are followed by many comments of Poor Baby, and They Did Bad Things To You. But the success stories are followed by This Is Propaganda, and You Are Hiding Things.

So what is it? Do you want to see all the stories, or just the bad stuff?

Karen Mayes

February 7, 2008 at 3:04 pm

K.L., bingo. Why are we talking about this? I think it is good to hear BOTH successes and failures of CI’s. I have noticed that some act threatened by the successes and act all triumphant at the failures, with “I told you!” attitude.

It is good to hear all sides of CIs. The world is relative… filled with perspectives. If people are happy with CIs, great for them. If feeling content with ASL only, great for them. What more do we need?

February 7, 2008 at 3:09 pm

To comment on two things -

I think all this talk of whether or not using the word normal is okay or impaired is just way too bogged down in political correctness. Those like Rachel who hear very well with CIs and are functionally hearing when they are wearing their CI processors can not simply identify themselves with one label. We’re also not using labels as identities as many of you are but, rather, as simple adjectives. Hearing that is there from birth and is between 0 to 20 db across the frequencies is defined as normal hearing. That’s a medical definition. Rachel cannot simply talk about her hearing and deaf friends because, in her world, those definitions are unclear. She has friends who hear with CIs and friends who have normal hearing. She has deaf friends who hear with CIs. She and her CI friends are deaf without their CI processors but are hearing with them. Note that I am not capitalizing the first letters of any of these words. They are just adjectives. These young adults and parents of CI kids are going to continue to use these descriptions. Our kids aren’t simply deaf or, for that matter, Deaf. It’s not about identity. It’s merely about using accurate descriptions. So, get over accusing her of having issues with her self identity because of adjectives she uses. I think there’s way too much nitpicking over this. Rachel has excellent self esteem and a very strong sense of her own identity and self-worth. Her choice of lower case adjectives is irrelevant.

Second, about CI failures. I agree with what Anna wrote – I think it is very wrong to label a child a CI failure. A CI failure should be exactly that, the failure of the implant, not a person. As K.L. said, there are many reasons why a CI may not work for someone. The predominant reasons, though, are age of implantation and follow-up therapy post-CI. Early on, the majority of those implanted were older kids who were not oral and who had not been taught to use their residual hearing to comprehend spoken language. Thus, their brains had no clue what to do with the signal from the CI, and it was too late for them to be able to develop that ability. Thus, the CI got a bad rap from these kids who ended up not using them because they didn’t work. Today, you’d be hard pressed to find a CI center that would even agree to implant these kids because they know now that they are not good candidates. The situation is very different today for kids implanted as babies and young toddlers. My younger daughter, who was implanted at age 15 months and had auditory-verbal therapy tests equivalently to her normal hearing peers in all tests of auditory-only comprehension of connected language, even in the presence of background noise.

Other blogs on deafread are doing a great job of digging up the CI horror stories that are out there. However, in Rachel’s and my world, we are not seeing these stories. We’re not denying that there are a few out there, but those in the deaf schools and in the deaf culture are going to be the ones to see a disproportionate number of these stories because the ones who are learning to listen and talk well with their CIs are not going to go to the deaf schools, and most will not seek out the deaf culture. Thus, you have no clue how many are out there who are doing beautifully and are very happy with their CI. We do know all these kids. We’ve personally met hundreds of them over the years. So, if we want to collect those stories to counter the disproportionate number of negative ones elsewhere on deafread, then that’s just the way it’s going to be.

February 7, 2008 at 4:25 pm

Ummm, K.L., interpreters work both ways. Not always, because hearing people sometime refused to provided interpreters while we can. Why? because we understand the needs. :)

K.L.

February 7, 2008 at 4:51 pm

Please Steve, lets not start arguing over interpreters now. You said that hearing people “can’t” (your word) talk to Deaf people. I am not going to try to defend ignorant people who won’t get interpreters. That is wrong. But it is not the same as can’t.

John Critser

February 7, 2008 at 5:08 pm

When anybody shares CI success stories, it’s their responsibility to honestly give the pros and cons and to detail any CI failure stories, especially healthwise. For example, I always honestly told everyone I came across to that I have to change into new ear molds twice a year and that my hearing aids always give feedback sounds which drive me and others crazy. Wax build-up, feeling dizzy, and headaches also occur because sometimes noise gets into our heads.

I would expect anyone who is deep into the world of CI, to investigate and learn both about upsides and downsides.

What are the downsides? If you don’t know, then you must be pretty naive, just taking others people’s word for it?

Must be pretty gullible. If I was getting a CI I would rather investigate and dig up facts. Sometimes we have to dig them up.

Tara

February 7, 2008 at 6:11 pm

I completely agree about not using the term “failure.” The majority of Deaf community members were labeled “oral failures.” It’s an ugly word and untrue. Anyway, my thinking is-if the deaf baby is exposed to sign language in addition to cochlear implants and AVT, there would be no room for error or so-called failures. I am truly trying to understand why anyone would be against this, especially when hearing babies everywhere are learning sign language. I am a parent and I recieve e-mails all the time from several parenting email lists touting the benefits of sign language. Why not do the same with deaf babies? I realize that cochlear implants are widely successful, but there ARE children implanted at one year old who aren’t as successful using their implants. K.L. you said, “And if one methodology doesn’t work, they need to reevaluate what they are doing.” But why until a methodology doesn’t work? By then, the child will ALREADY have missed out on so much. Why not give them all the options?

February 7, 2008 at 6:23 pm

Tara,

The reason that some of us follow the A-V or oral approaches is because there is research out there that shows that using both sign and speech with a child before the auditory feedback loop is firmly established can be detrimental to that child’s development of his/her hearing and spoken language. I actually cited about 6 or 7 research papers about this on another blog. I am aware that there is also some research saying the opposite. The fact is that, other than with research and personal experience, neither of us can prove conclusively that we are right. Thus, parents have to educate themselves, read the available research, and then make their own decisions as to what they want to do with their own child. Given the experiences that I had with my own two girls, if I had to do it over again I wouldn’t change a thing other than to have Rachel implanted 7 months earlier than she was.

K.L.

February 7, 2008 at 6:34 pm

Hi Tara,
I may not be the right person to answer this, since we used TC with Signing Exact English, but here goes:

There are more methodologies than just AVT and TC with ASL. Cued Speech works best for some kids. We chose SEE so that what we signed and what we spoke were the same. It was easier for us to speak and sign the same things. Much harder to do that with ASL unless you do it pigeon in English word order.

The thought process behind AVT is that to maximize the neural connections in the auditory center of the brain, you remove sign and visual aids so the child will concentrate and put all of his or her efforts into listening and paying attention to verbal input.

For many CI kids, this method pays off big time. I have seen the studies that show the results, and the AVT kids have the highest verbal skills of all the methodologies. And before you ask, sorry, I do not have them in front of me. But, yes, there are some kids that this doesn’t work for. Since I didn’t use this method, I am going to stop now. If you have any other questions about AVT, please adress Melissa.

Jeremy

February 7, 2008 at 8:59 pm

All of us fail and succedd in some way. We need to respect each other, especially for Rachel. Last time I checked, this is still Rachel’s website, not a website of so called Great Debates or a warzone.

This is her world. Her epic life. Her website is supposed to be informational and clarification. Her website is not designed to be a fighting machine.

John Critser

February 7, 2008 at 9:18 pm

Jeremy- Welcome to the world of DeafRead! Maybe not so epic world to you.

A toast. Cheers.

To reality.

Jeremy

February 7, 2008 at 11:23 pm

What the heck is deafread? By the way, I don’t drink.

February 7, 2008 at 11:33 pm

I’ve just had a failure 8 months ago, after 15 years of perfection. I made the decision yesterday to be reimplanted. you can read it in my blog – I’m sure I’m going to upset a few people with my opinions LOL. But for the first time in 8 months, I have started feeling positive and happy again. I really hate being without sound.

cheers
Robyn

Mishkazena

February 8, 2008 at 12:56 am

I am glad Rachel is sharing her experiences. I also am glad she is including stories of her c.i. friends. We need to hear both the successful and not so successful use of coclear implants (that’s better than calling people c.i. successes and c.i. failures, isn’t it?) Rachel is showing us one side. There are blogs that show only the other side and several that cover both sides.

John, Rachel is a college student. It’s not her responsibility to provide not so successful stories. This is her blog to do what she wants to.

Jeremy, DeafRead is a deaf aggregator. Check it out at DeafRead.com.

John Critser

February 8, 2008 at 2:57 am

Jeremy, hasn’t it occurred to you that when I do toasts, I do it with 100% grape juice. I don’t drink either. You don’t have to assume people drink alcohol if they give toasts.

Tara

February 8, 2008 at 12:41 pm

I guess it is difficult for me to try and understand AVT when I come from a complete different viewpoint (smile) but I am still here trying especially since I have a deaf son. I know many hard-of-hearing children who pick up spoken language beautifully along with signed language– even in deaf schools. So, I truly do not believe that using signs is detrimental to spoken language at all. From my experience, it seems that signs HELP develop spoken language in those with some hearing. Like you said, it’s all about personal experience. Those who use cochlear implants successfully would probably be less likely to seek out the deaf community because of myths– thus we don’t have much experience with those people. However, we do have plenty of experience with those who aren’t so successful with their implants/spoken language acquistion. I think that’s what scares us and why so many of us are trying to speak out. It is nice to see that both sides now can come together and discuss the issues and dispel some myths.

Jeremy

February 8, 2008 at 3:15 pm

Mishkazen, how about no to Deafread? “Rachel is showing us one side?” What the heck is that? Rachel is showing her successes and failures about cochlear implants. I also had my failures. I almost emailed you about my CIs story, but I changed my mind.

John, how about no to toast? I don’t care what you drink.

John Critser

February 8, 2008 at 10:07 pm

Jeremy, since the CI is a multi-million dollar industry, we have plenty of other failure stories to discover, like reporters. Or we can ask a newspaper reporter to investigate CI failures. I am sure they’ll do a good job. Newspapers are always digging for stories.

Where there are millions of dollars involved, there are always successes and failures.

That’s my 2 cents.

John Critser

February 8, 2008 at 10:17 pm

As for Jeremy’s comment about my toasting, I don’t do a half-glass either. Those who view Deafness as a deficit, a half-empty glass, I heartily fill up a FULL glass, and drink the grape juice to my heart’s content.

Ahhh. Tasted so good.

Mishkazena

February 9, 2008 at 12:40 am

Who says you must go to DeafRead? If you don’t want to, that’s fine with me. I don’t really care as I was being polite.

What I mean with Rachel showing one side.. I don’t mean the cochlear failures. I mean her ability to benefit from cochlear implants. By the way, with that attitude of you, I won’t want your story anyway.

Darth Vader of the Deaf community

February 9, 2008 at 3:50 pm

John,

There’s no such thing as so called CI industry. There are three different CI corporations and their goals are not to make money, but to restore hearing on whoever wants cochlear implant/s. Its not economic business type unlike Microsoft.

Mihksazena,

Who gives a rat’s tail on what you said to Jeremy. We don’t care what you want to say to Jeremy. We don’t even know if you are being polite or not or Jeremy being polite or not. That’s an issue with wriitng/typing. We cannot see emotions. So, suck it up!

John Critser

February 9, 2008 at 8:09 pm

Darth Vader- Yes there is such a thing as the CI industry. If they were in the business to restore hearing, they should do it for free. But of course the insurance coverage! Thus the CI industry is booming!

To be honest the whole world, whether that be the television, sports, medical, or clothing, cars, whatever it is that fancies us, it costs money, and people have to work for a living, so they earn their living, whether it’s fixing cars or restoring hearing.

Getting a CI is not as a result of a matter of life-or-death.

June 11, 2008 at 9:32 am

[...] implant resource website. While she does shares about her two C.I. failures in the blog post “Am I Hiding? No…“, she mainly writes about how the CI company handled the failures and how they are [...]