I am deaf with bilateral cochlear implants, a hearing device shunned by the deaf community. AMA

Wait, I'm confused. You had a complete lack of hearing, and this device makes you able to hear very well? And the deaf community shuns people for that choice? That seems a bit crazy to me. Does this type of elitism exist in other disabled communities? Do people in wheelchairs get mad at people who use artificial legs?

Maybe elitism is a wrong word for it, but that's what it seems like. Could you go into more depth about this? I'm really curious.

Correct. Correct.

It does seem crazy. I think it involves how there is a very active community and culture around being Deaf. People in wheelchairs can still communicate and interact with everyone whereas if you're Deaf you need other Deaf people (well, people who know ASL) in order to talk or just hang out or get anything done.

A lot of new parents nowadays are suggested by doctors to get the implant for their baby and the Deaf community thinks this is highly unethical as being Deaf is not a bad thing, just different. Many people feel the choice of getting the implant should be saved until the child is older and able to make the choice him/her self.

I've heard of this before, along with deaf people having kids with other deaf people, hoping the child is deaf. It just blows my mind. I really don't understand. Gaining the ability to hear, if simply to hear music, seems like an amazing thing to me. Or for safety! I remember watching a video by a deaf person on youtube and people kept mentioning in the comments that the person's fire alarm was going off, or needed batteries, changed in the background. I just don't understand why someone would choose or advocate to shut out a large part of the world.

Good for you for going against this type of seclusion. I hope your implants work out really well for you! *Edit: added some commas.

It is and thank you! I am getting upgraded in May so I can't wait for those!

I have also heard of some of those types of things. I once heard from a friend that a boy in class had an alarm that would go off every time the same day but couldn't hear it so each day all the kids would stare at him until he turned it off.

Although that really doesn't involve safety the same still applies.

Hello I am hearing my wife is Deaf. She wanted to let you know you are not at all shunned by us. She supports your decision and I feel like you can do whatever the hell you want. She wanted to emphasize that MOST Deaf are not this negative stereotype, that you must just have met some idiots (yes they are everywhere)

Thank your wife for the kind words and I do realize most people are not this way but the ones that are are more vocal about it.

Thank you again. :)

Idiots shout the loudest.

A common problem on reddit.

Hijacking a top level comment to tell it in a way that helped me understand better, though not necessarily agree more. (I've seen this discussion in every thread about cochlear implants)

Deaf people have a culture, a history, and pride in their communities. This is a carry over from not that long ago when technology that can "fix" some types of hearing loss had not been developed. They also feel shut off from the world and are sometimes treated poorly by "hearing" people. It is very difficult to understand if you are hearing just how much you pick up from people and the world around you from even shortly after birth. Take all that away, add in the fact that many parents suck and treat their own kids like a burden, don't take the time to learn how to properly communicate with their kids, and don't protect them from the onslaught of other children and adults always looking at them like they're stupid because they "can't understand simple English" and so on, and you may be able to understand why "deaf, dumb, and mute" was more akin to being racist against a people, than being mean to a "handicapped"

Now to a deaf person, getting a cochlear implant is something like being black and bleaching your skin white and trying to fit in with the same people who oppressed you for ages. They see being deaf as a cultural birthright, not as a handicap. This is why it is so difficult to change the mindset. It's like telling them, "but if you just act white, you'll get more job offers...I just don't want MY kids to be black." and so on. While I think they're looking at it in the wrong way, who am I (a person who can hear) to tell them what is the right way to think?

Seeing it through their eyes helped me understand, but I would still have a very difficult time not wanting my kid to have all the advantages that I did if I had the ability to give them to him or her.

TL;DR - Deaf don't see hearing loss as a handicap so much as a cultural identifier. Being deaf is who they are, not something that happened TO them. Cochlear implants are viewed more like changing race and less like fixing a problem or handicap.

Thank you for writing this up. You explained it much better than I could have! :D

I work for a government agency that runs hearing tests and is staffed with audiologists for diagnosing hearing loss and other auditory processing disorders - this comment absolutely blew me away. It makes me quite sad. It makes me feel like I'm wasting my time now.

You are not wasting your time. You are still helping people out. Just remember that.

the Deaf community thinks this is highly unethical as being Deaf is not a bad thing, just different.

Perhaps this is arrogant of me, but I can't help but think that only someone who has never been moved by music, or laughter or birdsong or whatever, could think that.

They have never heard any of that so it doesn't matter to them at all.

I actually had a friend, unfortunately she passed away of cancer recently, who had those implants done so she could hear.

I'm sorry to hear that. My father just recently beat his battle with cancer.

Could your friend hear well with her implants?

I better not tell people I wear contact lenses in public sometimes or all the myopic basement dwellers might shun me too!

Haha!

Not to ruin a joke but it might work better with something permanant like LASIK. The Deaf communities do not have a problem with hearing aids, just a permanent solution like CI which require surgery.

Are you openly ridiculed by people who dislike the cochlear implants? Also, why would they be hostile to being able to hear? I understand the fear of losing aspects of a culture, such as ASL, but wouldn't being able to hear be of greater importance for individuals?

I have been openly ridiculed before. A friend of mine came over and looked me up and down and checked out my ears and said something along the lines of, "I'm really disappointed in seeing you having those. Why do you feel you need them?" I simply explained my reasoning as I did on here. We were friends for a long time but are not really friends these days.

That's like your pothead friend going "why aren't you smoking? I'm really dissapointed". Just like somehow that hearing is a sin and should be shunned or relegated.

Its just that they are afraid that the person would stop using sign language (and use our voice only, which is not the case for me) and stop being involved in the Deaf community.

So instead they shun you... That's totally logical. >.<

Exactly!

I was really shocked to see this kind of attitude in a documentary I watched recently about cochlear implants. What really stuck with me was one deaf woman saying that fitting cochlear implants to a child was a form of child abuse. I mean, whoa, hold on! These things can give a quality of life to some people they wouldn't have otherwise if they live in a hearing family. The acidic nature of opposition to them is really worrying. I hope you haven't had to put up with too much shit.

That is exactly what the community thinks.

I haven't had to put up with much, probably because I am older.

Thank you for the kind words. :D

You mean signed something along the lines of.. Eh? Eh? :D

Ill just show myself out..

Real funny mister. :D

This is horrible. Imagine if this were about prosthetic legs. "I'm really disappointed to see you walking. Why do you feel the need to move around?"

Do you ever feel the desire to try to convert these people? Do you ever feel really angry when someone tries to tell you your hearing is a bad thing? I can't imagine going from deaf to hearing, experiencing music and birds and everything, and then being told you're inferior for having those experiences. I would be... I can't think of a good word to encapsulate the rage I think I'd feel.

Yes I get angry but I also explain it to them. Most of them are very understanding.

Also in my case I've always been able to hear (via hearing aids since I was a young child) so its a bit different than most others.

Thank you though for your concern.

Have you heard anything yet that was so beautiful to hear, or finally hear, that it made you cry?

The first time hearing things like crickets and birds made me cry. I had no idea what they were and had to ask my husband (well, for the crickets at least.)

"OMG CRICKETS THEY'RE SO BEAUTIFUL"

five minutes later

"MAKE IT STOP...PLEASE FOR THE LOVE OF EVERYTHING MAKE IT STOP"

** rips implant out **

Hahahaa.

** removes external connector from side of head **

Wow, never thought about that, you can just turn it off anytime can't you?

That could be useful in some cases.

Very useful.

There is a button to turn it off, another button that changes the program and only gives me local sounds, and then a plug that I can use with computers/etc (standard audio jack) to cut out all noise except for what I want to listen to. Some people also have more buttons / programs to change out the hearing works.

Of course I can also just remove the device from my head / around my ear.

:D

and then a plug that I can use with computers/etc (standard audio jack) to cut out all noise except for what I want to listen to.

Wow that's useful. I guess your implants have made you superior to us petty normal hearing humans!

I am a Cyborg.

:D

But crickets sound terrible.

NOW they do.

Maybe I read your post the wrong way, but it seems like you've experienced at least a little bit of the hearing world. With that in mind, what do you "hear" when you're deaf? That probably sounds like a stupid question, but I was just wondering if it is just complete nothing or maybe some faint ringing in the ears or maybe hearing something vibrate on your body. Unrelated to my question: have a great day! I hope the deaf community becomes more supportive of bilateral cochlear implants.

Sorry if its confusing. I can hear a faint sound if someone were to yell in my ear at extremely close range. Otherwise its just nothing. Absolutely nothing.

Thank you, you too!

I hope so too.

I thought of another stupid question. Before you had these implants you mentioned that you had hearing aids. I'm assuming those helped because you would've stopped using them if they hadn't. Anyway, despite being deaf, did you still hear your own thoughts before you could really hear anybody speak, or have you always had the hearing aids? Thank you very much for answering my first question and doing this AMA. Since I already said have a great day, have a great tomorrow!

I had hearing aids from about the time that I was a year old (maybe a little later, they were working on figuring out how much hearing loss I had.) I do hear myself think. I don't think or dream in ASL or anything like that. I have always heard and spoke in my dreams, etc.

Thanks again for the questions and I have enjoyed doing this so far. I hope you have a good tomorrow too!

[deleted]

Nope! I have a volume button! I can also turn it completely off. :D

Science is amazing! Sorry to hear about your friend. Is it similar to my situation or ?

So help me get this straight: you experienced inner monologue and imagined sounds before you ever experienced a real voice and heard actual sounds in the environment? When you read dialogue (ex: Hamlet's soliloquy) did your mind create an imagined voice? If so, that's mind boggling. Any difference with these phenomenon now? Also, I am glad you are happy. Don't let others get you down. (edit: I just read down and now understand you could hear with the use of hearing aids before you got the implants. Do you know the answers to my questions regarding someone you know who is completely deaf?)

Deftek got it right. Sorry for the confusion and misuse of words earlier. :D

So I guess "trying to become hearing" is like "learning to read", "correcting vision", "speaking well", or goin' to one of them fancy-dancy doc-tors.

Seriously, though, if I knew you, I would have the uncontrollable need to move my mouth (as if speaking) without using sound all the time so you'd think the implants didn't work.

In actual real seriousness, there must be some appeal to being able to turn the sound of reality "off" and "on".

I guess that is a pretty similar comparison.

Real funny mister.

Oh there is. I said elsewhere in this thread I can turn it off during arguments and actually get the last word. :)

Until they sign a final rebuttal at you :)

I should start saying

• Only works with non-ASL speakers.

I am a high school physics teacher (student teacher working on the state assessment for a credential) and I have a student with these. What suggestions, if any, do you have for me to cater to her in particular? How can I best enable her to succeed? (it's also part of my credential assessment)

It helps to be looking at the child so they can also read your lips (if they know how, or even without it can help).

If the child can sign get a sign language interpreter. The school should pay for this, not the teacher or the student.

Get a note taker. Someone else in class who will take notes for the child and make a copy.

If there is video lectures make sure they are captioned or an interpreter again available to sign it.

Good question and good luck on teaching!

Hello, fellow hearing aid (not quite cochlear implant) user here!

Just to confirm it for some people, the Deaf community (with a capital D) is the bunch of people who communicate, mostly, with sign language. They don't like to hear anything, and they can shun, like the OP, people from their community for simply hearing again. Yes, it's disgraceful.

However, there's the deaf community (lower case d) that are for people with any form of hearing loss. This community isn't as big as the Deaf community, but it exists.

OP, I have some questions for you :)

1) Has the tinnitus mostly gone?

2) How different does it sound from what it sounded like before you got the cochlear implants?

3) For any child/adult that's going to get cochlear implants, what can you give as advice?

4) How differently do people treat you, now that you wear cochlear implants?

Thanks :)

Hello HA user!

Thanks for clarifying the capital D thing for people on here. I was having my step brother type up a few of my answers and he might have missed the distinction in the earlier questions not knowing any better. :D

The tinnitus comes back sometimes but it goes away right when I put on the CI.

The HAs were no where as clear as the CI. Talking to people is so much easier. When I first got the CI turned on everything did sound robotic (more full I guess) for the first few days but then returned to normal.

For more extreme cases of hearing loss I would tell them to go for it as if they do not like it they can just take it off (and of course, not be able to hear at all). Keep your batteries charged! I have four so I can keep two charging at all times. Practice listening a lot. Watch TV with the captions still on so you know you are getting the right sounds (I still use captions out of habit.) Get used to going to the hospital a few times to get the mapping updated in response to things like hormone changes.

Besides the Deaf people who I already mentioned I would have to say that hearing and deaf people alike treat me much better and understand the reasons why I got it. It was a great improvement to my social life as well as to my hearing.

Thank you!

So - how ya feeling?

I feel fine! Thanks!

How are you?

Doing great, thanks for asking.

Good good.

Great AMA material right there.

It is Ask Me Anything. :/

Do you think if deaf people were to sample life with an implant it would change their views on them? Intellectually, I understand the perspective that says I'm not broken, just different. Emotionally, there are so many beautiful sounds in the world that I can't imagine giving them up or anyone who would walk away from a chance to hear.

Does that make sense?

It makes sense to me but I would say not for most Deaf people.

In my experience, I honestly think they would not even try. I think some would accept it but most would fear the Deaf community would disappear.

How do you feel about people who don't vaccinate their children against diseases like Rubella?

My mother had Rubella while she was still pregnant with me but the doctor refused to believe that she had it until it was too late.

I do feel that children should get vaccinated and I think the parents who don't are irresponsible.

On this side of the pond, children can't go to school without being properly vaccinated. Up until now, I thought it was like that everywhere =O

I think you can sign a waiver actually. Plus I'm sure the accepted list is also different depending on where you go.

Tell us about the state of technology for the hearing impaired.

• Are devices available with Bluetooth?

• How long do the batteries last?

• Do you have to remove them for airport security checks?

There is tons of research going on in this area and a lot of technology that's been in use for years allowing the Deaf to participate better.

I'm sure there is some company doing a Bluetooth enabled device but currently I have a special cable that I can plug into computers/radios/cell phones/etc (using the standard audio plug) that also connects to the bottom of my CI. It cuts out all background noises and whatnot and lets me focus on what I'm trying to listen to. So if they can do this I'm sure Bluetooth is here or on the way.

A rechargeable one lasts for about 24-36 hours and non-rechargeable lasts about 2 or 3 days. I use a rechargeable system where the battery goes into a compartment on the device by my earlobe.

I do not have to remove them for airport security checks. But also remember there is a plate implanted in my head as well! I have to tell them about this and I also have a special CI card I show them. Still the security scanners do not go off.

Thanks for the good questions! If you ask more specific questions I can give you better answers but there is honestly so much available to us to use (from video chat systems to internet relay to closed captions) that I wouldn't know where to start.

I am confused. Can you hear with these devices? Can you understand spoken language or not? Can you hear sounds but not understand spoken language? Are you deaf or not?

Sorry! Yes I can hear with these devices. Here is how wikipedia defines them:

"a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing. Cochlear implants are often referred to as a bionic ear."

The surgical part is a metal plate inside my head located behind the round thing (which is held in place via magnets) and provides communication with the microphone (located on the ear device).

I can hear (with the devices) almost as good as anyone else.

That is nice! I am glad to see that technology has done something good for you. (at least, I hope it is good.) Do you feel that it is a good thing for you or not? Do you get lots of hate from the deaf people who can not benefit from this technology? Do you have a job now?

Thank you for being glad for me! I do feel that this is good for me.

Honestly a lot of Deaf people don't even know I have it as I try not to broadcast it and its easily hidden.

Yes I do have a job!

Missed one.

I am considered legally deaf without my implants.

Hi, Since this is an AMA, I hope you get a chance to see my question. I was a relay operator for many years, Text to Speech to be exact. How do you feel about those types of services?

I know a lot of people don't like them because of the delay. And to be honest the accuracy isn't that great. But we do try hard. Harder than most people think.

I worked with many deaf customers. Unfortunately our business went under, (google UrRelay) but I gained a greater understanding of the deaf community. I think it's unique in a way how the deaf community is so established. In a way that, say, amputees or paraplegics are not. That's not to say they're the same as being deaf, I suppose I should shut up before I male a bigger idiot of myself.

My question is, how do you or anyone you know in the community view text to speech services? Is it an inconvenience, a necessary evil, a valuable part of life or none of the above?

I plan on answering every question so feel free to ask more. :D

I love those services!

I would say everyone loves them and uses them and is a valuable part of life. Thank you for being a relay operator and helping all of us out! Maybe we even chatted once. :)

We used to prank each other back at school using the relay as all students used the same phone and couldn't be traced back to one of us. Any similar stories?

The pranks were just part of life, I couldn't even begin to narrow it down to who was doing it, or remember a specific one. Did you ever use nextalk or urrelay? The only school I remember off hand (and this is breaching confidentiality agreements) is Helen Keller in New York.

It may come as either a surprise or a relief, but as an operator as soon as I was done with a call I forgot it entirely. I seriously could not remember something that happened 5 minutes before. It's a combination of having too much coming in at once, and honestly just not caring. So talking about your dirty, most intimate secrets through a relay operator is not a big deal. We really don't care. We're only worried about typing as fast as we can. When that's over we forget it. I hope that helps you and your friends if you were ever concerned about that. (unless it's really dirty, or a drug deal, or you were really bitchy about something, then we might mention it to our coworkers, laugh about it for a minute, then continue to forget it entirely, but NEVER did it go beyond that. even if it was illegal or immoral, it was just gossip between us, the powers that be aren't aloud to do anything about the content of a call)

Edit: I think we were one of the few services that went thru AOL instant messenger, even though we were contracted out and went by a bunch of different names. If you ever used AIM for a relay call, you probably went through me.

I don't think I ever used those. I used Michigan Relay Center, IP Relay, SIP Relay, and Video Relay (Sorenson). I do know about the Helen Keller school.

Thanks for the info regarding what its like on the other side of the screen. Glad to know all that was soon forgotten. :D

Thank you again for doing that kind of work.

Thoughts about the Neptune waterproof implants by AB? Would it help?

I didn't like those because of the shape but the waterproof would be a big help. When I upgrade my current ones in May they will be half the size and also waterproof.

I currently have Freedom by Cochlear America.

Fair enough. AB just seemed to have the true swimming stuff but I am just talking out of my ass. If it was me, I'd swim with AB but maybe safer with your choice. Good luck

Thanks!

I don't know much about these so excuse my ignorance, but do things sound the same as normal hearing? Also how does the piece over the implant stay attached to your head, magnets?

Disheartening to hear about it being shunned by the deaf community. I kind of understand but they shouldn't be so judgey of other people's life choices. Are normal hearing aids shunned too? If it were me I'd want to be able to hear my partner and kids say things like "I love you", and be able to hear the inflection in their voice which is a large part of speech.

Thanks for the AMA!

Its not as perfect as normal hearing but pretty close.

Yes, attached by magnets! Wikipedia considers it a "bionic ear". :D

Just the implants. Regular hearing aids are fine as its not a permanent surgery thing. I know many people who actually stop using hearing aids as they get older and just communicate using ASL.

Exactly! That is the biggest reason why I choose to finally get CI. So I could hear my children. To hear them say "I love you" or just anything else.

When using ASL though there is still a lot of emotion displayed with body and facial expression. The same sign sequence with a different facial expression could totally change its meaning.

Why do deaf people want to stay deaf? If i was deaf, i would do anything to get my hearing back

There is a pride to being Deaf and knowing ASL. Most people don't want that to be broken.

When your hearing aids were not available, what is/was most hindered by deafness? Also, when the deaf community sees you with your implants, do they publicly shun you?

I had regular hearing aids since I was a baby but in general the biggest hindrance is how other people don't understand us or how to communicate with us. They get frustrated easily and whatnot. Also due to being able to hear and being inside the deaf community I was used as a interpreter between pretty much everyone.

It depends on the person but usually its more of a disappointment in their eyes. For them they understand why I got it (since I was always able to hear and I needed it for my children, also due to the Tinnitus.)

Are any of your other senses enhanced by your hearing being impaired? Also, is the silence of being deaf sometimes pleasant?

I would say my case is a lot different from most as the Rubella also affected my eyesight. I had cataract removal surgery when I was only a few months old.

Most deaf people that I know though do seem to have sharper vision.

Yes the silence is sometimes awesome. Sometimes when in arguments I just remove the external portion of the implants and honestly can't hear anything - I guess I get the last word in then! Sleeping is also a plus since I can't even hear the little noises but then again alarm clocks don't really work.