My own CI experience, my views on CI and ASL and Deaf Culture and Society

Uh, oh! Is there an argument? Dang, I missed it!:lol:
 
shel90 said:
Maybe it depends on where you live cuz where I live, so many hearing people I have encountered know about them. I even shared a story here on AD a few years ago about one of my hubby's coworker telling me I should get one and why dont all deaf people get one to improve themselves. Heck, even my neighbor across the street knows what it is and she has never met a deaf person until me.
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Oh yes, I remember your post telling us all about it.

Everytime I go see my doctor, he'll invite others to come in thee room to look at my implant. He's a great doctor though.

My nurse who comes to my apt on Mondays, Wednesday and Fridays to change the dressing on my wounds on my chest says I am not her first patient with a cochlear implant.
 
faire_jour said:
I think 99% of the population have no idea what a cochlear implant is, even today. I think if you asked 1000 random people VERY few would have even heard of it, let alone know who can get one or what the risk/benefits are. I had never heard of them, or seen one, before Miss Kat was 18 months old. (in retrospect I remember that they talk about it in ER once, but it meant nothing to me.)
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I agree, at least for outside the Deaf community. Most of the Deaf community, however, do know what a CI is because of all the ANTI-CI hype.

The entire time I had lived in Wisconsin from age 4 until the day after my 21st birthday, I had only known FIVE people that had a CI, of which 2 of them has stopped wearing their CIs completely. The other two - the first girl I knew from the local neighborhood school, she wore her CI regularly and still do to this day, and the other girl - who is one of my best friends, used to wear her CI regularly until she came to WSD, and because of peer pressure from the other Deaf students, she only would wear her CI in secret in her room when listening to music, and then she decided she was not going to allow peer pressure stop her from enjoying her CI anymore, and began wearing it openly during her senior year and now wears her CI most of the time. And the last one, was someone I grew up with, went to most of the same schools together, etc, he was HOH, but then all of a sudden he lost so much of his residual hearing and he wanted to be able to continue to listen to music so he got a CI a few years ago and does well with it now. See, only 5 people!

I moved to Minnesota the day after my 21st birthday in late August of 2001 and in the entire 5 years I have lived there I have not met ONE SINGLE PERSON with a CI at all ever.

Then I came to Texas in April of 2006 and met 4 more CIers, 3 of them who are now my friends, and saw a whole bunch of other CIers who I have not made friends with because I just do not know them well and have not been introduced to them - I am rather shy. I see them at the DAW festivals. And I have seen some other CIers around the city but have not approached them as I am shy. I think I've only seen a total of about 30 or so CIers here in San Antonio, and even that is not very many people, compared to many people I have seen and who I have known who wear HAs. Those who wear HAs are in the thousands, while there are not very many CIers in the whole large state of Texas. Even back at WSD in Wisconsin there were so many students who wore HAs and never got any issues from others about their HAs, but hardly any CIers.

I've had a lot of people mistake my CI for a bluetooth headset, but I correct them and tell them it's a cochlear implant and tell them to google it for more information. I have even heard of a couple of cases where someone has stolen someone's CI (actually snatched it off of the person's head and ran off with it) because they probably thought it was a very fancy uber-high technology bluetooth headset that had just came out that cost like $500 but is really a $7,000 CI. (I can imagine them trying to use the CI as a bluetooth, they probably are like "what the fuck is this circle shaped piece, and where does it go?" and "why the hell is there a magnet in this thing?!" and "how do I make the damn thing to work?!")

I do, though, like to enjoy freaking out some people on the city buses and elsewhere by popping the CI coil on and off and on and off once in a while just to fuck with the people who are looking at my head and make them wonder how the hell did I get the coil to stick to my head when they can't see anything else on my head and does not know I have a magnet under my skin, LOL...hee hee, they probably thought I was doing a magic trick, LOL! I bet the kids goes "mommy, that girl is doing a magic trick with her head!".
 
shel90 said:
Maybe it depends on where you live cuz where I live, so many hearing people I have encountered know about them. I even shared a story here on AD a few years ago about one of my hubby's coworker telling me I should get one and why dont all deaf people get one to improve themselves. Heck, even my neighbor across the street knows what it is and she has never met a deaf person until me.
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If someone had told me to get a CI to "improve myself" she or he would immediately get bitchslapped all the way to the moon and back. We're not defective or ignorant or criminal people or whatever who needs "improvements"...we're Deaf, we're not defective nor are we stupid nor are we criminals or whatever...being told we should get one to "improve ourselves" gives us the idea that there is something wrong with us mentally, that we are defective, and that there is something wrong with being Deaf. I didn't get a CI to "improve myself", I got one because I WANTED one. I have no need to improve myself, even without a CI...

Your husband's co-worker had such nerve to tell you that all Deaf people should get CIs to "improve themselves". That's very insulting.
 
Lucia, ive never been against CIs. I remember when I was 10 and in a deaf summer camp, one of my friends had a CI and I saw a couple others with CI. I was told that this guy needed a CI because he was 100% deaf and no HA worked at all. Back then, unless you were 100% deaf, you weren't a CI candidate. That criteria should have remained true to this day.

Of course any deaf person can choose to get a CI or not, it has nothing to do with me or anyone(or even the deaf community) but that person alone. I do understand the controversity in parents forcing babies and young children into CIs but me and the deaf community doesn't have alot of problems with adults being able to inform themselves and decide. Babies and young children are unable to consent and decide.

I would only "force" a CI on my child(when/if I ever have one) if that child had no residual hearing or so little(like your 115db loss) that HAs are useless. I do not believe in the CI hype at all. I can understand CI being amazing for people like you(115+ db loss), Hear Again(120db loss at 750Hz, NR above), Skullchick(110 db loss), ladyschemit(100+ db loss at 500Hz, no high frequency hearing), overthepond(90db at 250Hz, NR above 1000Hz) and a few others who are all profoundly deaf(at least 90db loss at 250Hz and up) otherwise ill wait till the child is old enough, could be 10, could be 13, could even be 18 to decide. What harm is there in NOT forcing a CI? Ive never seen anyone mad at not being forced into CI and instead waiting for them to decide themselves.

You mentioned that two of them stopped wearing CI, were they forced into CI, did their CI malfunction or was it due to peer pressure from the deaf community?

I read that 30,000 Americans wear CI, that's 1 in 10,000. Ive also read that 1 in 1000 Americans are profoundly deaf. I also read that 98% of the CI "candidates" choose to wear HAs instead. Ive read CI blogs and nowdays it appears that those getting CIs are simply buying into the hype. One of the female blogger decided against CI but her audiologists and ENTs kept pushing CI on her so she ultimately decided to get CI even though her unaided hearing is way better than mine and she should have never been a candidate. She never tried the best HAs or had them programmed correctly as her aided scores aren't better than mine, yet her unaided scores are. If I had her unaided audiogram, id hear so much better than I do now.
 
honestly do not see the "hype" of the CI being different in this pretend world. You cannot ignore the potential benefits of the CI. When you have a good product that shows results, people want it. Simple as that
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Actually I think it would be more akin to the analog vs. digital debate. Doesn't everyone remember how digital aids were hyped way back when as The Next Best Thing?
I don't deny for many people that it produces amazing results.........but at the same time history has proven that everyone responds to hearing technology differently.
 
deafdyke said:
Actually I think it would be more akin to the analog vs. digital debate. Doesn't everyone remember how digital aids were hyped way back when as The Next Best Thing?
I don't deny for many people that it produces amazing results.........but at the same time history has proven that everyone responds to hearing technology differently.
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Phi4Sius is one example who wasn't happy with digital HAs and when he went to analogs, he heard 100%! The danger of hyping CI is that not everyone would benefit from CI or see an improvement over HAs because like you said below............

"history has proven that everyone responds to hearing technology differently"

And you would be very correct! :cool2:
 
deafdude1 said:
You mentioned that two of them stopped wearing CI, were they forced into CI, did their CI malfunction or was it due to peer pressure from the deaf community?
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One of them I have never asked as he was not in the same grade as me, and the other one just simply did not like his CI (he was two grades below me but was my best friend's ex).

I read that 30,000 Americans wear CI, that's 1 in 10,000. Ive also read that 1 in 1000 Americans are profoundly deaf. I also read that 98% of the CI "candidates" choose to wear HAs instead. Ive read CI blogs and nowdays it appears that those getting CIs are simply buying into the hype. One of the female blogger decided against CI but her audiologists and ENTs kept pushing CI on her so she ultimately decided to get CI even though her unaided hearing is way better than mine and she should have never been a candidate. She never tried the best HAs or had them programmed correctly as her aided scores aren't better than mine, yet her unaided scores are. If I had her unaided audiogram, id hear so much better than I do now.
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Yes, about 30,000 Americans. Not very many. Keep in the mind the entire general population of the US, and then the entire Deaf population in the US. It's a hell of a lot more than 30,000. If you are saying that you read that 98% of the CI candidates did not get a CI, then where is the hype? There does not seem to be a hype if only 2% of the candidates went for the CI while the 98% chose to stay with a HA?

I want to see the link to this female blogger you are mentioning.
 
deafdude1 said:
Wow 115db loss, no wonder why you stopped wearing HAs, they ceased to become of any real use when there wasn't a measurable amount of residual hearing to amplify. My audiologist did say(and ive posted his sayings in other threads) that no HA in the world would touch a 120+ db loss since the UCL(uncomfortable level) would be reached before the threshold level. Basically by the time you give enough SPL to aid a 120db loss, youd be experiencing discomfort from so much sound pressure pushing against your ear drum.

Nowdays there appears to be too much hype about CIs giving people perfect speech and making them "hearing" Ive read older CI blogs before all the CI hype and recent blogs where people "hope" to hear like a hearing person and understand everything. I understand perfectly that CI is amazing for people like you but for those who benefit from a HA, I do not believe in CI. One lady was scoring 95% speech comphrension on the online speech test, yet she's still getting a CI. She became defensive when I tried to tell her that her expectations weren't realistic or how much benefit she got from HAs seeing she has only a moderate hearing loss(60db at 250Hz) even with my 75db loss at 250Hz(according to most audiograms) I still get decent benefit from HAs. You can search my past threads and read my blog to learn more.

24db average is great, seems like im seeing more and more people scoring better than 40db. Ive always been told that 40db was the average. I still read blogs where the ENT and surgeon says "expect 40db as a realistic expectation" so that's where I got the 40db average.

NR means no response. SRT, SAT is speech response and awareness. SD is speech discrimination. MLC, ULC is most and uncomfortable levels. I reach the UCL at 115-120db in the 1500Hz range. Unfortunately my HL also happens to be about that much so basically almost all my hearing comes from the low frequencies, I hear very little or nothing above 1250Hz.

CIs have been around since we were born so I don't understand all the hype. I am seeing people that benefit(or could) from the best HAs getting CI. I would pay the $50,000 cost to have the unaided audiogram they have rather than a CI.
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Speaking for myself, my loss was around 115 dbs across the board except at the lowest fequency six months before I got my CI. My loss was at 80 dbs in the lowest fequency. I was shocked because I remembered my loss being in the 70 to 100 db range as a child.

I've always wished I had taken an audiogram in my early 20s so I would know if my loss was progressive. I found it quite difficult to wear my HA and environmental sounds made my ear ring due to severe recruitment. I had no speech comphrension at all.

Now with the CI, I can hear at 20 dbs. I do not always reconginze sounds that I hear though. I can understand speech much better than in the past.

I already had good speech before I got the CI. However, I didn't pass for hearing pre CI. I can pass for hearing IF I don't attempt to pronounce words that I have no idea how to pronounce post CI.

I had low exepectations when I got my CI and I'm pleased to say it has surpassed my execpations. I'm also happy for Lucia because she's happy with her results so I'd say she's a CI success.


I must say I don't feel comfortable when people call my CI a miracle. It suggests to me that they think I can hear perfectly. And I hate it when I take off the CI and people ask me if I don't like it "no more". Oh I love my CI but I also like to have silence from time to time. MYOB! :pissed:

Unlike Lucia, I didn't always want a CI and I came here to post against CIs but changed my mind and got one.
 
LuciaDisturbed said:
Yes, about 30,000 Americans. Not very many. Keep in the mind the entire general population of the US, and then the entire Deaf population in the US. It's a hell of a lot more than 30,000. If you are saying that you read that 98% of the CI candidates did not get a CI, then where is the hype? There does not seem to be a hype if only 2% of the candidates went for the CI while the 98% chose to stay with a HA?
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Exactly. Where's the hype?
 
Well............the thing is......I do think there is hype for the CI. It does seem like there's a lot of "pushing" for the CI. It would be different if the canidacy was more strict. But it does seem like ever since they loosened the canadiacy there's been a huge " this is the NEXT generation of hearing aid"
Heck, I got randomly msged by someone who kept trying to push me towards a CI. One of my friends is on the CI circle or another list like that, and she said that there are some people who are on the list who are almost like .....bots for CI.
 
deafskeptic said:
Speaking for myself, my loss was around 115 dbs across the board except at the lowest fequency six months before I got my CI. My loss was at 80 dbs in the lowest fequency. I was shocked because I remembered my loss being in the 70 to 100 db range as a child.
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You can see my audiograms in my blog. I used to be 70-100db loss, now im 70-120+ db loss. Do you have any scans of your audiograms?

I've always wished I had taken an audiogram in my early 20s so I would know if my loss was progressive. I found it quite difficult to wear my HA and environmental sounds made my ear ring due to severe recruitment. I had no speech comphrension at all.
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I wish I could find my audiograms from before 1998 and any between 1998 and 2002. I lost some hearing somewhere in between and never even noticed, guess it was gradual. I do remember being able to hear the feedback on my old Widex HA. My loss appears stable with a small drop once or twice from 1998 to today.

Now with the CI, I can hear at 20 dbs. I do not always reconginze sounds that I hear though. I can understand speech much better than in the past.
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At what frequencies do you hear 20db? That's an impressive result for CI. I hear 20db and better with my HAs at 500Hz and below.

I had low exepectations when I got my CI and I'm pleased to say it has surpassed my execpations. I'm also happy for Lucia because she's happy with her results so I'd say she's a CI success.
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I have more residual hearing so itll be quite difficult for CI to meet all my expectations, especially in the low frequencies. Besides stem cells will offer so much more in the near future, I might as well wait a few more years for that.

I must say I don't feel comfortable when people call my CI a miracle. It suggests to me that they think I can hear perfectly. And I hate it when I take off the CI and people ask me if I don't like it "no more". Oh I love my CI but I also like to have silence from time to time. MYOB! :pissed:
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I don't consider my HAs miracles either and I won't call stem cells a miracle either. Stem cells will just make me less deaf or HOH so I can get excellent benefit from HAs.

Unlike Lucia, I didn't always want a CI and I came here to post against CIs but changed my mind and got one.
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I was never against CI and realize that CI benefits many deaf people. I thought about getting CI in 3-5 years from now but with the breakthrus on stem cells, ill get stem cells instead for all it's advantages and far better hearing.
 
deafdyke said:
Well............the thing is......I do think there is hype for the CI. It does seem like there's a lot of "pushing" for the CI. It would be different if the canidacy was more strict. But it does seem like ever since they loosened the canadiacy there's been a huge " this is the NEXT generation of hearing aid"
Heck, I got randomly msged by someone who kept trying to push me towards a CI. One of my friends is on the CI circle or another list like that, and she said that there are some people who are on the list who are almost like .....bots for CI.
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That's the one thing we agree on. If anyone pushes CI on me, ill tell them there's no point since ill be getting stem cells in as little as two years from now. I know you don't think we will ever see stem cells for deafness, I won't argue with this because it's your choice. Anyone who isn't interested in stem cells, that is their choice. I believe in stem cells for deafness, I want it and that is my choice!
 
Deaf Culture/ASL here to stay?

I believe that as long as we keep using ASL and encourage ASL (and please also include those of Deaf people who also like to speak - some do like to both speak and sign - also some like to just speak sometimes and then sign at other times, whatever suits them at the moment - that is their choice as well), as long as we keep ASL a crucial and large part of the Deaf culture and society, Deaf culture and society and ASL will never be destroyed no matter what technology comes out. I do not think that it is technology that can take away Deaf culture or society from us, but rather the lack of ASL. No matter what technology (HAs, CIs, BAHAs, whatever comes out in the future) comes out, as long as we keep ASL, Deaf culture will not disappear. But if you take away ASL, that is what can make Deaf culture disappear. See what I mean?

I'd wholeheartedly like to believe what you say. However, I am seeing incredible numbers of young babies being implanted. Additionally, some educational programs and audiologists are advising parents of deaf implanted children not to provide any sign support or to put them in any educational programs that support total communication. I'd like to see validity in research with ASL/Deaf culture remaining intact regardless of the technological and medical developments being made available. :hmm:
 
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Thanks Lucia. You make some very compelling points in your original post. I also happen to agree with you.
 
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