Are Cochlear Implants An Insult To Deaf People?

[AnacondaEq]

This is a personal history of my own experience with hearing loss. It is not intended to be a blanket view of the deaf community, but simply my own experience. The reason it is posted here is because hearing loss is a 'big thing' in regards to technology and some big gains have been made in the attempt to restore hearing both in newly born deaf and those who have lost their hearing later in life, I am one of the later.

I lost my hearing (in both ears) at the age of 16, and remained profoundly deaf until the age of 20 when I lucky enough to be offered a cochlear implant.

Prior to my implant, I attempted to integrate into the deaf community, but this was hard, given that I could not 'sign' I did attempt on multiple occasions to learn it, but was turned away with the excuse that funding was reserved for those who where born deaf. I could not understand the reasoning behind it, but accepted it, and to this day have not been granted the full funding that born deaf people are granted. I do not know if this is a regional phenomena, but that is how I have been treated.

Getting back to the subject at hand, I did make a few deaf friends prior to my implant, and we communicated via lip reading and writing. When they found out that I was getting an implant, these people I had made friends with, where quite outraged. They told me that there is nothing 'wrong' with being deaf (and indeed there is not) and that by attempting to restore my hearing, that I was sending out a message that being deaf is something that needs to be 'fixed'.

I attempted to explain that there is NOT anything wrong with being deaf, but that it would be preferential to hear (why would you want to go without a sense if you don't have to), they found this quite offensive. And told me in no uncertain terms, that if I wanted a cochlear implant, I would no longer be a friend of theirs.

I got it anyway, and have seen a dramatic change in my life, I can now communicate fluently with family, strangers and friends. Something that I struggled with prior to this greatly. It has basically given me a whole new lease of life.

I am saddened to say that the friends I made in the deaf community have turned their back on me, and told me that I am turning my back on the 'community' by attempting to hear better (that I am saying there is something wrong with being deaf)

No matter how I try to explain it, they do not want to listen, most of these people have never heard music (something I have loved for as long as I can remember) and are even in favor of genetic manipulation to alter their children to be born deaf (to me this is abuse, and insanity to the extreme, - they even made a court case out of this.)

I don't know how many (if any) deaf people read this forum. But given my experiences with the deaf community (in Liverpool at least) it has been cutthroat and unyielding in its stance in regard to cochlear implants (yet totally accepting of none surgical hearing aids)

This is the purpose of my poll, to get a wider view of whether cochlear implants are seen as an aid or insult.

 

[ramonmercado]

I've heard some deaf people describe it as genocide. I can to some extent empathise with you regarding your deaf ex-friends; when I realised that I was bisexual rather than gay I was ostracised by some gay friends who accused me of acting the straight.

 

[Mythopoeika]

I've heard some deaf people describe it as genocide. I can to some extent empathise with you regarding your deaf ex-friends; when I realised that I was bisexual rather than gay I was ostracised by some gay friends who accused me of acting the straight.

Yes, I've noticed that more gay people are skeptical of bisexuality - more so than even straight people, it seems.

 

[EnolaGaia]

I don't find your experience all that surprising, and here's why ...

Over the last 40-odd years I've had substantial experience interacting with blind and deaf people - both personally and professionally. Most particularly, I spent almost 8 years as a claims representative for the (US) Social Security Administration, and was thus required to interact with all manner of differently-enabled folks all day every day.

Based on my experiences, I got the clear impressions that:

(a) deaf people were more likely to be (how to say this? ...) emotionally volatile, prone to demonstrative outbursts, and generally behaving 'with a chip on one's shoulder' than blind people.

(b) among the deaf people with whom I've interacted, this sort of seemingly surly demeanor appeared to be most pronounced among those who'd been born deaf or lost their hearing in infancy.

My theory is that early deafness denies one the all-pervading linguistic milieu via which we learn how to live with others (not just how to communicate), and thus divorces the deaf from mainstream social interactions more deeply than the blind. This separation is amplified by having to learn and rely upon alternative communication protocols (e.g., signing) that are only used within the minority deaf community (along with the even fewer hearing-enabled folks who learn to sign, etc.). The end result is a relatively small and closed community whose lifelong members are disadvantaged in terms of their facility with social / linguistic interactions generally, above and beyond their hearing deficits.

IMHO this general outcome has been aggravated by a tendency to extend more sympathies, research, and services to the blind than to the deaf. We 'normal' folks tend to treat blindness as the worst conceivable (single) sensory deficit, and to downplay deafness as something presumably more 'manageable'.

This last bit would seem to argue for no more a better balance of concern toward the deaf versus the blind. Even if that were accomplished, I don't believe it would solve the deeper problem of isolation / segregation fostered by disconnection from the conversational milieu in which the non-deaf are immersed from cradle to grave.

Based on these points, I don't find it surprising you were castigated and 'shut out' for having elected to resume hearing.

One more anecdotal bit ... I was 9 years old before the adults figured out I was legally blind (severely myopic). I had managed to seem pretty normal by doing a lot of careful listening and paying close attention to the few blurry visual cues I could detect. It required constant attentiveness just to get through a day. Over the years I've occasionally been asked which sense I would choose to lose. Even though I know how problematical visual impairment can be, I believe I'd still rather lose my sight than my hearing.

IMHO the real insult to deaf people lies in casually underestimating the implications of their deafness.

In any case, your age at hearing loss (16) meant you were already too heavily vested in the 'audible world' to deny yourself the opportunity to return to it. You did the right thing, and I congratulate you on its apparent success.

 

[PeteByrdie]

Deafness does not need to be 'fixed', in the same way as my inability to travel for long distances faster than five miles an hour doesn't need to be 'fixed'. I still have a car! This kind of politicising of a, shall we controversially call it for now, disability, doesn't really help anyone. I doubt the 'deaf demographic' are going to increase their influence much by swelling their numbers. You were betraying no-one but the small minded and shallow thinking by getting a cochlear implant, but would have been betraying yourself had you not.

I got it anyway, and have seen a dramatic change in my life, I can now communicate fluently with family, strangers and friends.

Perhaps we should all get one!

...when I realised that I was bisexual rather than gay I was ostracised by some gay friends who accused me of acting the straight.

This is a disgrace! I've dated a couple of bisexual women, and in both cases, and emphatically one, their own awakening of their sexuality was a difficult process. The gay community, of all people, should understand that ones full acceptance of ones sexuality can be a circuitous and often confusing personal journey, and it only makes it harder for us to accept who we are when our peers refuse to.

 

[skinny]

no

 

[Pietro_Mercurios]

I wear glasses, these days. Otherwise, I couldn't read.

 

[OneWingedBird]

Traitor! :shock:

 

[Peripart]

This will inevitably sound patronising, but you wanted people's opinions, so here goes: I actually feel sorry for the narrow-mindedness of those who can't bring themselves to feel happy for you. Surely they should understand that (especially as you lost your hearing relatively recently) you would want to regain that lost sense.

Do those suffering from ingrowing toenails consider me a traitor for having mine removed, so I can walk comfortably again? Would I be betraying the bald "community" if I wore a wig? Obviously not. Equally obviously, I have cited two silly examples to illustrate my point, but you hopefully catch my drift.

 

[ramonmercado]

I wear glasses, these days. Otherwise, I couldn't read.

You could compromise and wear a monocle.

 

[rynner2]

I wear glasses, these days. Otherwise, I couldn't read.

You could compromise and wear a monocle.

I say, Jeeves, what a spiffing idea!

 

[Anome]

I've always wanted a monocle, if only in part because one eye is worse than the other, but it seems the hipsters have taken them up recently. So I suppose I'll have to wait for that to die down first.

 

[Cochise]

I'd certainly jump at the chance of a replacement eye. Going through life with one eye isn't really a problem on the same scale as profound deafness, but it is sometimes a nuisance and a barrier.

Although I imagine learning to see properly with a pair of functioning eyes would be quite difficult.

 

[AnacondaEq]

I'd certainly jump at the chance of a replacement eye.

The very strange thing that I have encountered (in my experience) with the deaf community, is that they have NO problem at ALL with the use of hearing aids, in fact 99% of the deaf people I have met use hearing aids.

However they seem to 'draw the line' at surgery, telling me its a 'step too far' (a seriously 'wtf' moment for myself.)

The arguments I have been given by those using hearing aids (who are in opposition to cochlear implants) is that that surgical intervention is simply insulting, and that hearing aids are like 'wearing prescription glasses'. I still don't see the logic in this argument...

One conversation involved me explaining to another deaf person (who actually benefited from hearing aids, but OPPOSED cochlear implants) that I do not have any ear drums, I cannot gain ANY benefit from hearing aids, it is a physical impossibility. Their retort ?

I don't believe any of that, they are just saying that to make you get one

(a cochlear implant)

I tried to explain that I would not undergo risky surgery without trying hearing aids first, and that if they want to put a camera down my ear, there will find no 'working apparatus' that would benefit from a hearing aid, in any shape or form.

Even a complete body of evidence and the laws of physics cannot convince some people....

 

[Cochise]

I was aware of the somewhat strange views of a section of those afflicted by deafness in the US when I lived there - there was a local controversy over a child with hearing who had two deaf parents. He not unnaturally had reached school age with a limited range of speech but fluent sign language, and the school put him on remedial speech therapy which the parents objected to.

They almost seem to carry it to the extreme of wanting to prevent those with hearing from using their ears...

I can't imagine what right these people who object to your implant think they have to give you hassle. It's entirely a decision for you.

 

[hunck]

Anaconda - I'm wondering what happened to you to result in losing your hearing. You mentioned going deaf at 16 and subsequently having no eardrums so hearing aids not being an option. Did you get some sort of infection which destroyed them? Presumably you had eardrums up to 16 if you were able to hear 'til then.

I'm also curious about the cochlear implants - how would you describe your hearing now, using them as compared to your 'normal' hearing prior to losing it? Do they sound reasonably natural or somehow electronic?

Anyway it must be a joy to have regained your hearing after 4 years.

 

[AnacondaEq]

Anaconda - I'm wondering what happened to you to result in losing your hearing. You mentioned going deaf at 16 and subsequently having no eardrums so hearing aids not being an option. Did you get some sort of infection which destroyed them? Presumably you had eardrums up to 16 if you were able to hear 'til then.

I'm also curious about the cochlear implants - how would you describe your hearing now, using them as compared to your 'normal' hearing prior to losing it? Do they sound reasonably natural or somehow electronic?

Anyway it must be a joy to have regained your hearing after 4 years.

Not sure what happened to my previous post (seems to have disapeered) cant be bothered to type it all again, but to cut a long story short, I got mastoiditus in one ear and then the other (second time was due to childrens hospital not forwarding my details to adult hospital when I turned 16)

I started to vomit, blacked out and almost died. I was in surgery for 14 hours and was told if I had come in one hour later the infection would have reached my brain and killed me. The infections (both times) destroyed most of the inner ear including the small bones and ear drum.

In regard to how things sound. They dont sound robotic at all. People's voices that I knew prior to the implant sound the same, as does music ect.

Pretty amazing piece of technology.

 

[EnolaGaia]

Not sure what happened to my previous post (seems to have disapeered) cant be bothered to type it all again, but to cut a long story short, ...

Pretty amazing piece of technology.

I can vouch for the complete version having mysteriously disappeared. I don't know what happened, but I noticed the FTMB seemed unusually 'dead' earlier today. My suspicion is that there was a site or database breakdown.

In reference to the long post (which I found quite interesting and well-stated! ...) ...

If I understood correctly, you have the implant in one ear only, and therefore are hearing in 'mono' - right?

You'd mentioned your ability to 'localize / focalize' (pinpoint and attend to) one conversation out of many occurring around you was not as good as it had been.

This decline in the ability to localize / focalize would be explained by a loss of 'stereo' hearing. Much of this ability is internal or cognitive (selective attention), but that's not all that's involved. Source localization is much more effective in 'stereo', because you can pan through the 'soundscape' to find the orientation in which the target voice / conversation is most prominent in your soundstage / sound field.

 

[AnacondaEq]

If I understood correctly, you have the implant in one ear only, and therefore are hearing in 'mono' - right?

You'd mentioned your ability to 'localize / focalize' (pinpoint and attend to) one conversation out of many occurring around you was not as good as it had been.

This decline in the ability to localize / focalize would be explained by a loss of 'stereo' hearing. Much of this ability is internal or cognitive (selective attention), but that's not all that's involved.

Yes I only hear in Mono (its quite amusing for my friends when they are standing next to me and I do a 180/360 turn seeking them out (starting in the wrong direction (!) when they say my name. I don't have directional hearing, but it does not cause much of a problem to be honest (mostly me looking a bit silly turning in circles looking for the source of a sound/voice - not too bad )

I would agree with you that much of the ability is down to attention (if I am 'concentrating') on a certain group of people in a semicircle, I am able to keep track of everyone who is talking all at once, no matter what direction it is coming from. Once it leaves the bounds of my peripheral vision, I have no idea who said what, or from where (although I can identify the voice, I have no idea where it came from)

Another (semi amusing) anomaly is the fact I can pick up very far off sounds (but not the direction it is coming from) the digital processing that occurs in my implant is very (very) clever at picking up sounds at both close and far off distances. So sometimes I can hear a noise that nobody else can hear (thinking I am going mad) only for the people I am with to 'pan around' slowly until they can pick up the same sound (a distant car alarm usually)

Another quite amazing benefit I have gained from the implant is the fact it has wireless abilities available. I can 'link' a microphone and place it within 200 meters of where I am standing, and repeat word-for-word what has been said.

I actually used this to play a trick on a distant cousin of mine who speaks Arabic, and convinced him I had learnt the language within 7 days. I bet him that I could understand anything he said in Arabic within 7 days. My other cousin stood nearby (who spoke fluent Arabic) listened to everything that was said, then casually walked back into the house (little known to the person that I was tricking, that he was wearing a linked microphone')

I made excuses for 'time to think' whilst the other cousin got back the house. Once they got there and started to repeat (in English) what my other cousin had just said. I was met with awestruck faces and a round of applause.

I explained it all in the end of course. But the trick is no less impressive, given the amazing nature of the technology.

I have heard rumors (I don't know if they are true or not) that 'special agents' have had under skin cochlear implants in order to receive orders in the eventuality that they are captured and/or to avoid detection. The technology is there (with new battery technology) for under skin implants to last a certain amount of time, but I am unsure how true this is, given that I have to change my battery twice a day.

Perhaps a new conspiracy thread is calling?

Edit: A more 'mundane' ability I gained from the implant is the fact I can be wirelessly linked to my remote microphone (connected to radio or pc) and listen to music whilst I mow the lawn. I can turn off the local microphone (and not hear the lawnmower or local sounds) and listen to a sole sound source, up to 200 meters away.

It does wonders when loud distracting noises are going on around me. I can listen to anything I like, oblivious to outside influences.

 

[rynner2]

Not sure what happened to my previous post (seems to have disapeered) cant be bothered to type it all again, but to cut a long story short, ...

Pretty amazing piece of technology.

I can vouch for the complete version having mysteriously disappeared. I don't know what happened, but I noticed the FTMB seemed unusually 'dead' earlier today. My suspicion is that there was a site or database breakdown.

I too saw the earlier complete version.

The "site or database breakdown" idea is supported by the fact that I also got several "Suspicious Messages" today for the first time in months, and I posted about this earlier.

 

[hunck]

I too read your post which has since gone missing. Many thanks for answering my questions.

You've certainly been through the mill with a horrible set of events but it sounds like you've come out the other side better than might have been. And some interesting benefit with the distance listening! It's amazing what modern medicine can achieve.

I'm still intrigued as to how the implant works - is there some sort of diaphragm which vibrates with the sound waves and converts to an electrical signal wired in to your audio nerve?

I notice you get through a lot of batteries as well.

 

[AnacondaEq]

I'm still intrigued as to how the implant works - is there some sort of diaphragm which vibrates with the sound waves and converts to an electrical signal wired in to your audio nerve?
I notice you get through a lot of batteries as well.

I'm no expert but ill try explain how I (think) it all works as best as I can, given my own research and experience.

The Cochlear implant consists of two parts. The inner (implant) and the outer (processor). A small 'indent' was made into my skull for the inner implant to 'sit' in and a small wire was fed through my inner ear into my cochlear. The implant itself is ceramic and as far as I know made from inert materials (as to avoid rejection by the immune system)

The 'wire' that is fed into my cochlear consists of 22 'nodes' that begin at the entrance of the cochlear and end in the centre. To get an idea of this think of the spiral you see on a shell (this is where the cochlear part of the ear got its name I beleive)

The 'nodes' artificially stimulate nerve impulses that would have otherwise be conferred through the ear drum and small bones from the inner ear, the cochlear would usually be stimulate by thousands of impulses to create sound, the 22 'nodes' from the wire inserted, replicate these impulses (albeit, on a far smaller scale)

Of the 22 'nodes' on the wire I had implanted, only 17 of these are active (the other nodes caused too much pain when subjected to certain frequencies, despite this I still gained a huge level of hearing ability)

The outer part of the system is called the 'processor' this is the machine that does all the work, and contains a microprocessor that interprets the sound incoming and sends them to the 'nodes'.

My first processor was quite large and bulky, and had a single microphone. It worked well, but struggled with ambient (background) noise.

My second processor incorporated two microphones, and cut out background noise dramaticly.

My third processor (the one I am currently using) has two microphones and increased 'computing' power, it has further reduced backround noise interference, in addition to being water proof/resistant. I have been swimming with it, and its incredibly liberating to go on holiday and take part in all the activities (before this I was confined to the 'deckchair' or went in the water alone.

Each iteration of the processor has increased my ability to hear, in addition to adding new technology and getting smaller and smaller. The newest iteration has Bluetooth and wireless capabilities and is far smaller than the original.

I originally relied upon small cell batteries (similar to watch size batteries) the processor used 3 of these and I would need to change them 3 times per day.

The latest processor incorporates rechargeable batteries (with the option for cell batteries in an emergency) the rechargeable batteries are lithium based and needs to be changes twice per day, (but are far smaller than the earlier iteration) I have another larger battery that lasts all day, which I use when I am unsure if I can carry replacement rechargeables)

I am unsure what the next iteration of the technology will bring, but each upgrade brings amazing and exciting updates. There are options offered to me to upgrade the inner workings of my implant (replacing the implant and 'nodes' themselves) I believe one upgrade consists of 36 or more 'nodes) but given that the out part of the technology (the processor) does most of the work and that I have seen such great benefits from the processor upgrades, I am reluctant to have further surgery to replace the inner implant.

I hope that explained things a bit better, I'm sure others could explain it better but those are my experiences (and understanding) of the technology involved

Edit: to get an idea of what the 'processor' looks like. Think of a small bluetooth headset hidden behind the ear (indeed most people think this is what I am wearing). No part of it goes into the ear canal and its almost completely hidden behind my ear. The implant in my skull is covered by skin and has a small layer of magnetic material. The sound is relayed to a small 'coil' behind my ear that attaches magnetically and transfers the power and information passively through my skin to the implant underneath. The whole processor can be taken off at will and I don't sleep with it on at night.

 

[Ermintruder]

Technology futureologists predict this type of bodyworn or implanted device could be powered by a 'joule thief' (think of body movements converted into generated electrical power via a micro-pendulum, similar concept to Seiko self-winding wristwatches). Other serious contenders for powering future PAN (personal area network) bodyworn tech include biochemical voltaic generation, and musculo-skeletal joint power scavenging (jump start, anyone?)

Existing /putative fully subcutaneous devices used by the secret services (and perhaps also stage mediums and pro gamblers) may be powered by RTGs (radioisotope thermal generators), fuel cells or non-contact charging devices. I blame Joe 90.

Positional source information based upon auditory input is generated by phase detection effects in the fleshy spiral of the outer ear. This is a minibiological preanalogue of the Roman/Greek amphitheatre effect. Like bats (and Noddy) we'd all be lost without our big ears. Test this effect, those of you without this marvelous (and well-explained, here) cochlear implant.

Try losing your ears for a while. No, dear reader, put that breadknife down. Simply place a couple of cardboard toilet roll tubes over your ears. You'll hear perhaps even more than ever, but have almost no clue as to what direction any sound is coming from.

 

[stu neville]

Not sure what happened to my previous post (seems to have disapeered) cant be bothered to type it all again, but to cut a long story short, ...

Pretty amazing piece of technology.

I can vouch for the complete version having mysteriously disappeared. I don't know what happened, but I noticed the FTMB seemed unusually 'dead' earlier today. My suspicion is that there was a site or database breakdown.

I too saw the earlier complete version.

The "site or database breakdown" idea is supported by the fact that I also got several "Suspicious Messages" today for the first time in months, and I posted about this earlier.

Yeah a few things seem to have vanished / reappeared etc etc - wasn't anything I did so will investigate...

 

[Pietro_Mercurios]

Not one but two articles on cochlear transplants, from the Grauniad:

They can transform the lives of profoundly deaf children.

But, at £40,000 a time, should the implants be made more available to profoundly deaf adults?

 

[Kondoru]

Thank you for such a stirring story, its a shame there are so many naysayers even for things which are proven to be good.

I have Aspergers and will say a cure wouldn't be much use to me...But if it could be used to allow someone severely autistic then I think it would be a good thing.

 

[Pietro_Mercurios]

Video of 40yr old woman, hearing for the first time.

http://www.theguardian.com/world/vi...0-year-old-women-hears-sound-first-time-video

 

[PeteByrdie]

Video of 40yr old woman, hearing for the first time.

http://www.theguardian.com/world/vi...0-year-old-women-hears-sound-first-time-video

I was nearly in tears myself watching that. Modern science is amazing!

 

[hunck]

Fantastic. It's hard to imagine what hearing for the first time would be like after 40 years of silence.

 

[hunck]

More from the lady concerned. A truly heartwarming story:

http://www.theguardian.com/commentisfre ... 0-jo-milne