Attitudes toward Cochlear Implants

For the last few days there have been an interesting, constructive dialogue going on over one blog owned by Patti Durr who wrote a posting "Cochlear Implants... Let's Talk" (http://handeyes.wordpress.com/2010/08/31/cochlear-implants-lets-talk/).  I have been following it, because I am a Deaf mother of a late-deafened teenage son who received a cochlear implant last year and I have seen both pro-CI and anti-CI sides debating the pros and cons of CIs, especially over the babies and children diagnosed with hearing loss.

I write this blog, with Patti's wonderful blog in my mind, having NO desire to open any can of worms, bringing up the word "audism" to this blog.  I am just expressing my opinion and how I feel about it and you are welcome to leave any comments on my blog... respectfully please.

First of all, the CI is just another hearing aid for my son so no big deal was ever made over it; instead we strove forth to meet his needs.  He is comfortable with speaking and listening, as well as being fluent in ASL.  We made it clear to him that CI was NEVER a miracle, unlike what CI companies make it look like in their marketing ads,  and that it might require some work, like some kind of AVT (at the end the sound/speech recognition assessment tests showed that he did not need any therapy; his brain picked up CI-generated sounds easily, thanks to his having been hearing when he was very young.) Nah, nah, he was never mentioned in the media or anything like that.  Currently he attends a Deaf bilingual school.

Anyway, in the "Cochlear Implants... Let's Talk" posting, the brave hearing parents showed up and shared their experiences and their feelings about the Deaf community's attitude toward the CI technology.  Of course, the hearing parents feel that the younger the child is, the better chances for attaining a desirable hearing level from the CI technology are. Overalls, they are appreciative of what the Deaf Culture offers for their Deaf children and they make efforts to involve them in the Deaf community. Kudos to them. ~hands waving~

My experiences with the attitudes from both Deaf and hearing communities toward my son with CI... I hate to say this, but he experiences more backlash from the Deaf community over his CI.  He tells me how he'd be quiet when his Deaf peers discuss CI with scorn and a degree of hostility, due to  them hearing a lot of negative/horror stories from the older Deaf people.  One time, a week before his surgery, he spent overnight at a Deaf friend's house and he watched the Deaf adults discussing CI surgery somewhat negatively, about how babies and children died from the CI... they knew that my son would have surgery and they talked about it anyway.  Also, another Deaf friend emailed me a link to a Deaf vlogger's video about a kid having his CI exploding out of his head, which is NOT true, when she learned that I gave an OK for my son to have the surgery.  From the hearing community, he gets more curiosity... "What's that?  Oh, cool.  Looks like some kind of iPod" attitude, but overalls, the majority of the hearing people doesn't really care.

Patti brought up an idea of a list of do's and don't's for the Deaf community to behave when they encounter Deaf people (children, youths, and adults) with CIs:

"- don’t look at the child as one big ole CI (or 2) they are much much more than that

- don’t be quizzing them about their CIs

- dont be throwing projections onto them re: ur own issues or concerns re: CIs

- do accept them

- do welcome them

- do love them

- do encourage them to sign

- do make an effort to meet them half way "

She's asking for more ideas for do's and don't's, so go over to her blog and share your ideas there.  One Deaf commenter expressed her concern that the teachers praised the CIs.  To be honest, I have NEVER had ANY teachers from both Deaf schools and mainstreaming schools praising the CI to my face...  It could be due to my son acting normal about it and due to my awareness of the sensitive, controversial issues surrounding the subject.  If I were a hearing parent, I might feel, think, and act differently.

I acknowledge the concerns over the way the CI companies market their products and I DO question that.  I DO question the prices of CI. I'd like to see a more balanced marketing advertisements.  I'd like to see the actual statistics of successes and failures of the CI technology. 

Overalls, thanks to Patti Durr for bringing it up, opening up a willingness to talk about the attitudes toward CIs.

Comments

[Karen Mayes]

I'd like to post one link to another blog posting which was about the attitude also.

http://nostalgicchildhood.blogspot.com/2010/09/does-cochlear-implant-ruin-beautiful.html

[Miss Kat's Mom]

I said something at my daughter's old school about "bilateral implants" (long before my daughter was a candidate) and she said "No, no, no swearing here..." and laughed. This the attitude that many Deaf people have, that CI's are nasty, bad things.

BUT, we have been lucky enough that in real life NO ONE has given us any negative feedback about her CI's (well, actually, one older lady asked me if she was hard of hearing and I said no, she has bilateral implants, and she seemed taken back, and said "both ears?" and I said yes, and she looked a little dumbfounded, but that was all). People have actually come out of the woodwork to show us their CI, people who I would have never imagined were implanted. And, they have even been supportive of her attending the oral school. I simply say that we have to follow her lead, but that we intend to continuing signing, and that is good enough.

BUT, I have no idea what they say behind our backs, and I have no idea if they are being honest. We sign voice-off at Deaf community activities, but she does wear her CI's, and we just try our best to support others the way they have supported us.

I wish that everyone was lucky enough to have a supportive Deaf community like we do, it has made all the difference in Miss Kat's life. I have no idea how different her life would be if we had had a nasty reaction when she was a baby rather than the wonderful emrace we got....BUT she didn't get a CI until she was 5, so we didn't have to face it until she was older and well established in ASL and the community.

[Karen Mayes]

Hello MKM... Glad you paid your first visit to my blog ;-)

I am sure that by the time Kat reaches her adulthood, the controversy over CI technology would have died down and that the Deaf community won't bat its eye over CIs.

In my case, I guess it's a bit unique... because I am one of the rare Deaf parents who decide to allow the Deaf child to be implanted... kinda making me sort of a traitor to the Deaf community. I have to explain the reasons for the decision, that like Kat, my son had a progressive hearing loss and that his brain was hardwired as a hearing person, blah blah and then the Deaf people would accept it as a valid reason. So... hmmm...

Anyway, you are doing a good job, MKM :-) Thanks for leaving the comment.

[Candy]

Hey Karen...I left this comment (in part) over at Patti's.
~~~~~~~~
I once asked a parent (deaf) if I can ask their child questions about CI, the parents said, sure. The kid was eager to tell me everything about it. Obviously he loves it. He is very aural (uses ASL) but, is improving on his speech. I can see him getting better over the years. He is demanding to get another CI and go bilateral. You know how you see kids demanding a wii or 4 wheeler and stuffs like that? He's demanding FM system and another CI. His dad said said, no, you don't need it and he's arguing with his dad over it in front of everyone. It was funny. That ain't a spoiled child, this child knows what he wants! This is a culturally deaf family right there! That family was open to CI and it was an extended family involvement that got this child to go for a CI in the first place, but with parents approval.
~~~~~~

So, you're saying we shouldn't be quizzing kids about their CI? What if we want to know more? Jodi from Tuscany always tell the adults to ask her son, and her son seemed ok. Or are you referring to certain question or whether one is sincere or not in truly wanting to know more about CI or just being negative?

[finlake]

Hmm, this is a bit late (its past my bed time) for me to comment but nevertheless. Uh, I just want to chime in my opinion from my background. As for that particular Deaf commentator who mentioned about teachers "praising" the CI kids, I'd view it similiar to "favoring the kids with CI" with an assumption the teacher is hearing.

Well, from growing up with hearing aids, and impeccable hearing/speech (I kid you not), I do notice the bias from the teachers immediately, and I sorta withdrew from the spotlight because I felt it was not fair to the other classmates who are totally deaf and equally deserving for the praises.

But then again, like I said, I just wanted to chime in my .02 cents.

Toodles.

PS a bit off of the point but, I heard you got an immediate family member reading Wicked -- May I ask if you have read it yourself? I so love that book, very much! I read it in three days (by my standard, that tells me it's -THAT- good of a book) few days ago.

[Karen Mayes]

Candy,

I think it's a good idea for us to ask the children a few questions about their experiences with CI. A few adults and many kids did ask him about it and he answered them comfortably, leading them to realize that the CI was just a device, nothing more. This part, he does not mind. What he minds more is the attitude which has him squirming, feeling being signaled out even though the talks/jokes/etc were not directed to him...

I brought up one idea to an instructor at NTID, but that professor had a lot of projects to complete first... even though she liked the idea very much. Why not interview the tweens and teens with CI over a few years, meeting twice or once a year until they entered colleges or graduated from colleges, either way, to get an idea of the evolution of their feelings about themselves, whether CIs had any causes to the changes, how they dealt with the peer pressure, etc. That would be an interesting study.

[Karen Mayes]

Hello finlake, about time we met. I heard a lot of positive stuff about you ;-)

That "favoring" part, I can accept that. Lately in the mainstream setting and nowadays in the Deaf school, the teachers have been fair to him, treating him no differently, so I appreciate that. I really have no clue about what's going on in the "hands-off" oral Deaf schools nowadays, how the children with CIs fare, battling for attention from the teachers, etc., but if the teachers still showed the kind of "favoritism" based on how well the children heard and spoke, yes, it's a problem affecting the self-esteem of the children.

By the way, about Wicked... no, I have not read it :-) My son is reading it now and he says it's good. My sister mentioned it had graphic sex in it, but then my son had read several books with graphic sex (heck, the last two Twilight books had plenty of sex in them anyway...a great way to introduce elementary- and middle-school kids to sex, huh? :-( )

Thanks for leaving the comment.

[patti durr]

hi karen

thanks for all u have contributed over at the People of the Eye thread and for this blog entry.

its really important that we examine the unexamined

peace

patti

[Karen Mayes]

Candy... again.

It's how the questions are posed. Like, "you have headaches from CI? Any seizures?" etc., the kind that I don't really care for, because they show that the people expect my son to have some medical complications from wearing the CI. I'd not mind the questions like the ones about the differences in the quality of the sounds, for an example.

Hope this clarifies a bit.

[K.L.]

I encourage open curiousity, and have taught my daughter to be open and friendly in answereng questions. What I don't like is when the questions are really veiled probes trying to find a way to twist the child's words into something negative, or hinting that it is ok to hate the implant. So far, we have only gotten negative comments from Deaf people. I work very hard to shield her from those attitudes, but as she grows up and becomes more active in the Deaf Community, I won't be able to sheild her anymore. It is a sad thought that I would need to sheild her from the Deaf Community in the first place.

[Dianrez]

KL, it almost sounds as if you regard the Deaf community as an evil entity? Overgeneralization, maybe? Who is protecting the Deaf kids from the Hearing community, might be a good question to ask.

[Ann_C]

There comes a time when parents cannot shield their child, no matter their best intentions, when that child grows up into the teen years from what ANYONE will say to her/him. That "anyone" could be a hearing or deaf person, doesn't matter. What you instill as character values within your family and the support you give to your child are gonna kick in and hopefully prevail in those trying years to adulthood.

[Karen Mayes]

Hello,

I kind of took a day off from the internet yesterday, so it was a nice day.

Anyway, okay... hmmm... "sheltering" from the Deaf community? DON'T. There will always be some people who'd rub us in a wrong way, same as in the hearing community. And we'd rub some people in a wrong way as well. My kids attend a bilingual Deaf school, involved in the Deaf activities, etc. Heck, my daughter signed up practically every afterschool activities that I need to know the schedule of the activites to make sure that she attends many. My son was fretting about afterschool activities, because of his grade status (he's taking high school classes while he's an official 8th grader and he wants to take high school afterschool activities but was told to wait for the answer... he's hoping to get involved in academic bowl, yearbook club, etc...)

The point is we are not letting the misguided attitudes to stop us from continuing to be involved in the Deaf community. As long as people ask us about our son's CI, we will continue answering honestly. But we don't toot about it, because it is NOT a miracle to us... it's just a fancy hearing aid and he likes it a lot ~shrug~

Just don't let a few anti-CI people scare you away... they don't represent us the whole Deaf community. All I can say is follow your child's lead; if he/she shows a preference to hang out with other Deaf people, do let him/her. Just don't close or tear down the bridges between two communities.

:-)

[finlake]

K.L., uhm, I don't know you, but I figured I'd give you a piece of advice. Don't think all the deaf/Deafs are the same. I personally don't care too much for C.I., simple as that. Only thing I think would be beneficial for the deaf/Deaf (those who have residual hearing if at all) would be usage of sign language alongside AVT. Doesn't hurt to have a solid back-up, no?

Karen, I hope we get to meet one of these days much sooner. And as for Wicked, I personally think you oughta read it. It's quite an eye opener and parallels to our world, as well. ^_^

[Karen Mayes]

All right. I see things have gotten a little bit tense on Patti's blog...

My only hope is that whatever inspired in her blog would not scare away the hearing parents from the Deaf community.

Take care.

[finlake]

Indeed. I got a little bit uncomfortable, too, because the last thing I wanna do is to alienate the hearing parents of the d/Deaf child. I'm a little heart-broken to see the results, too. -sigh-

[Candy]

finlake..

According to KL, AVT cannot be used alongside ASL. She explained that over at Patti's. What is AVT? Do the deaf community understand what AV entails? It's not like speech therapy at all, from what I have seen it being explained.

I have never had backlash for wearing a hearing aid, although I have gotten looks that are priceless when some deaf ppl find out I can use the phone. Silly. I was born with this amount of residual hearing, I wear HA, what is wrong with taking advantage of everything I have?

It would seem some people are concerned that they are losing many deaf CI kids to the world. They should be happy that these kids are doing well. The ones that are not benefiting much from their CI, we need to find out why.

What I am seeing is the kids whom are implanted early, as infants, do way better than those profoundly deaf implanted late. All the kids with implants at a school for the deaf or mainstream program with deaf/hoh providing ASL or sign language - how many of them were implanted as infant? What are the ages they were implanted. I am willing to bet that the ones that were "dumped" were never implanted as infant. So far, no one is able to get back to me on this. I do apologize for using the word "dumped" but, can't seem to come up with another word that would explain what I meant.

Karen, I had submitted a comment after my comment above, probably didn't go through cuz I probably didn't submit correctly. Did it via my phone the other day so...and then, I forgot what I said.

[Karen Mayes]

Candy, I just checked the comments in the administration and there were no comments waiting for me to approve nor in spam box...

As for "dumped" part, you are correct... I went through my memory bank to see if there were anyone who were implanted when they were babies going to Deaf schools... I can't think of one. I do know a few who were implanted as children going to Deaf schools after spending some time in mainstreaming.

Well, looks like we'd know more about it in a decade or so.

[finlake]

I'm gettin' the impression AVT is a form of speech therapy which incorporates the listening skill, as well. From the way I was trained when I was a child (sign language was utilized during my AVT training), it has paid a huge dividend for me now that I'm almost if not 100% functional in the hearing world.

I'll have to go back and look it up in Patti's blog in regards to the why's via K.L.

Candy, don't you love it when you see the priceless facial expression of the hearing going "you wear hearing aids and you can hear me? but you're deaf!" "Well, yeah." I'd laugh afterwards. :)

Anyways... the only few drawbacks I have with the hearing aids are the following: batteries, massive accumulation of ear wax, and the damn feedback when the earmold gets old.

Now, back to the topic, I hate to say this, but I'm seeing the Deaf as a dying breed. Genetic Engineering is already here, and would not be surprised it'd be used to the maximum any time soon, if not currently. The sperm bank's already rejecting the d/Deaf's semen, if you didn't know.

Well... what should we do with the "dumped" implant kids? I'm quite certain there is something we the d/Deaf can do to help them secure their future. As for the statistic in regards to your question, I really don't know if such thing actually exist. Maybe, if not a small pool through the industry?

Karen, nice to see you use those words -- memory bank. :)

[Candy]

Haven't checked back here, til now. Some blogs have automatic notification of responses if there's a box to check, but...hard to keep track of where I left comments at especially when I do leave lots of comments all over. yikes.

Finlake...the way AVT was explained to me, no gestures, no signs, nothing visual. Focus is on listening and speaking without relying on lipreading. What you went through might be similar, I don't know..just guessing here. ;) Sometimes I think I have incorporated AVT in my daily life without realizing it. I do make an effort to understand the radio and really put my ears out there to understand what's being said. Is that AVT? Obviously CC on TV isn't AVT because captions are there. Try understanding what's said on TV without captioning, is that AVT? ;)

Like I said, I'm way too late coming back here...so, if I don't get a response no worries.

[Jennifer]

I'm glad you addressed this. I get tons and tons of questions on if I plan on getting Philip implants and most of the questions that are followed by a "why not?" come from hearing people. Depending on the person I tend to answer because it's not my choice it's his. I'm glad to finally hear a deaf adult's point of perspective where they aren't just saying No to CIs and saying that having a CI is equalivant to not wanting to be deaf anymore or a betrayal to the community.

[Karen Mayes]

Hi Jennifer,

Philip won't be qualified for CI due to his degree of hearing loss, which I believe you said around 70 dB loss. Usually more than 90 dB, hearing aids no longer beneficial, failure to recognize the sounds and words, etc... are the keys for the CI candidacy. Really, there are many factors that the audiologist look into. As long as Philip's hearing aids help him, he likes them, etc., no need to worry about CI. David was born with normal hearing and had to go through a slow progressive hearing loss, so his brain was already "hard-wired" as a hearing person, so he was an excellent candidate for CI.

Thanks for leaving your comment here... I enjoy your blogs as well ;-)

[Jessica M]

I am an 19 year old female with 3 cochlear implant, 2 has completely failed and my original one is barely hanging on. I honestly would never recommend a cochlear implant because 1/ if you are deaf and uses sign language to communicate, the choices you are given are either get a cochlear implant and talk, or stay deaf and sign. That's not much of a choice isn't it? 2/ it's a pain to constantly waste your time going back and forth for hospital appointments. 3/ I has suffered major pain, and I mean MAJOR, yet the doctors didn't believe me and finally did something about it 2 years later. Having a cochlear implant holds a lot of restrictions, like no volleyball, no reenactments, no park-our, not trampoline, no water activities, no extreme activities etc. I am profound deaf and I can't even get accepted for a job, I've applied nearly everywhere, still I get discriminated for my deafness. I can't receive a disability pension as I'm not 'disabled' enough which is stupid, I am deaf and I am not proud. Being deaf has cause me so much pain, social-wise, physical, and emotional. I was diagnosed with severe depression in high school and I refused to take anti-depressants. My experience is a bad one, but I guess it's different for everyone else.

[Karen Mayes]

Hm. Well, my son was on swimming team when he received his CI, and continued swimming. He plays sports. So forth. He asked for CI... to this day, he has not experienced any pain since the surgery and activation. We have a trampoline and he uses it with no problem.

I hope you'd do well in your life.

[Larry H]

HEY KAREN MEYER!

DO YOU KNOW "THE MASK BENEVOLENCE"?

[Cheap Chanel Watches]

If the opinion is right, they are deprived of the opportunity of exchanging error for truth

[Rob]

I'm the hearing parent of a deaf 3 year old. I guess I was oblivious to all of the controversy surrounding CIs, the deaf vs. hearing community etc. I have to say that I was taken aback by the general hostility I have encountered thusfar from the deaf community at large not just towards CIs but towards the "hearing" community in general. I heard the argument that the "hearing community" will look at CI recipients as freaks but it was the "deaf community" that I found with that sentiment not the hearing. It really angered me. It seemed to me that they viewed people as being either hearing or deaf. As if there were such thing as the "hearing community". We were all born with ears. The ears area a sensory organ that serves a purpose. Yes you can live and thrive without hearing just as you can live and thrive without sight; but for the most part, hearing is kind of important for a great many paths in life. I do not share the generalization that people are either of the hearing community or the deaf community. We are all human beings just trying to live, love and prosper. People are people. I love my daughter. She happens to be deaf. She was diagnosed very late. She has other medical problems. She will probably learn sign language. We've already begun but as no one in the family is deaf, its a challenge. We've gotten her accepted into a school for the deaf and she is beginning speech therapy very soon. We have an appointment with the doctors on Wednesday to discuss her candidacy for the device. She is not part of the "deaf community" or the "hearing community" she is my daughter...carrying my DNA...and part of my community not anyone elses. I know CIs are no miracle cure. We've done plenty of research. If the CIs let her hear her mommy sing to her or her daddy tell her a story at night; if they let her hear the birds singing, laughter, music etc., thats precisely what I will do for her. If she turns out not to be a good candidate...so be it. To me it is exactly the same as if she were born unable to walk. If there were a procedure available to allow her to do so...of course she would get it. If she weren't a good candidate for it...so be it. We will support her and do whatever we can to help make her a successful young woman...and if the "deaf community" doesn't like it? Well there's one sign I do know how to make.

[Karen Mayes]

Rob... I hear you. People are people... right. Unfortunately, for some reasons, the cultures have their own norms that we all have to conform to. Rochester, NY is more accepting of deaf people with CIs, for which I am grateful. Deaf culturally people tend to be very jealous and feel threatened by the CI technology...

My son with CI is accepted here by his Deaf peers, for which I am grateful.

Thank you for leaving the comment...