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View Diary: Audism Explained (18 comments)

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  •  I'm a LDA with bilateral cochlear implants (7+ / 0-)

    While I agree with your comments regarding audism and believe even people who are merely HOH, experience something similar, I find your condemnation of cochlear implants to be misguided.

    Any competent surgeon has no problem avoiding the worst of these side effects - damage to the facial nerve. The risk of that particular side effect has been greatly reduced in the last few decades as the surgical techniques have become more refined. However, though I am a mentor for the brand of CI I have in both ears, my first piece of advice to anyone who considers the surgery is not, "choose my brand" but, "choose your surgeon first".

    The protocol for the surgery now calls for two vaccines against meningitis. I know, because I've had them both. My first implant only one vaccine was required but by the time I had the second one two years later they required the second, so I got it also.

    I understand the frustration over people viewing deafness as a problem. I think for many hearing people it's just hard to comprehend not being able to hear. After all, it's the only sense the human species has that is "always on". Even people in comas still hear. In the hard of hearing community which focuses on using our residual hearing to understand and mostly vocal speech to communicate the common issue is we tend to get dismissed as stupid as our pleaful, "what?" hoping for a repeat of the question/statement is interpreted not as lack of hearing but rather lack of understanding.

    I think attitudes about CI's are starting to change in the Deaf community, but the progress is slow. I don't have a problem with deaf parents raising their deaf children in the Deaf world, but think it is indeed up to the parents to do what is right as they see it for their children. Hearing parents who have a deaf baby will want to be able to communicate with that child in the manner they know and understand. Children implanted before the age of 4 (and they are now doing it as young as 18 months I believe) effectively grow up hearing.

    In the end it does come down to culture, but in reality, hearing is just a tool same as seeing, touching, tasting, etc. It's one more way to interact with the world.

    For me the choice to return to hearing was an easy one. My life had completely fallen apart after my hearing hit bottom. Since implantation I have returned to work, found myself more engaged with the world and actively looking to volunteer - especially in the hearing loss community. In fact I now consider working to help improve the lives of people with hearing loss to be my life work and I enthusiastically endorse implants for anyone who's hearing has gotten bad enough to start to withdraw from the world.

    However, I do understand about Deaf culture and have been slowly learning ASL over the last 3 years in particular to the point I can communicate basic ideas with people who use ASL as their primary language. It started because I believed it was where I had to go and now I continue my study and use because it's a great tool and I'm enjoying learning a new language. I believe the fear of no more deaf babies due to cochlear implants drives the Deaf community to reject this wonderful technology because language to a large extent IS culture and if there are no more deaf people there is no more need for ASL and then Deaf culture will die.

    Like I said, it's a complicated issue, but for me the choice is and was obvious. I would never go back to the shell of a life I had when my hearing was at its worst.

    Voting straight party D 'til there's no GOP... Oh and the name is Jim, not Tim, the user name is a typo

    by jusjtim35 on Fri Nov 15, 2013 at 08:24:48 PM PST

    •  Oh and you are completely wrong (6+ / 0-)

      About the difference between sound from a CI and a HA. They don't give CI's to just anyone either, you have to have at least a severe hearing loss and have comprehension with no visual cues below 50% (I think, it might be slightly higher or lower).

      The sound from a CI actually DOES mimic my old hearing life even though I sit here completely deaf at the moment with my external processors removed as I relax for the evening. Sound quality from a hearing aid only does so much and it's very different from "normal" hearing. For me the amount of comprehension I got at the end was negligible and the minute I activated my CI my understanding was better right away using the new ear.

      Finally, hearing aids are not covered by insurance and CI surgery is. So that can actually make CI's cheaper for the average person. My first ear was paid for by Medicare my second ear from my new insurance after going full time at my job.

      Voting straight party D 'til there's no GOP... Oh and the name is Jim, not Tim, the user name is a typo

      by jusjtim35 on Fri Nov 15, 2013 at 08:30:17 PM PST

      [ Parent ]

      •  Great post. (2+ / 0-)
        Recommended by:
        jusjtim35, sturunner

         It's nice that you were able to explain things as an CI User. Keep in mind that I was not condemning the use of implants. Rather I speak up against doctors who keep on telling parents that their baby is utterly doomed just simply because they're deaf. add on the high prices of CIs, and it just basically seems like they're milking you for money.

           I firmly believe that choosing CIs is up to the parents AND the deaf person. A doctor should never pressure them into doing something that they are not ready for. Especially if there's not any competent surgeons in the area, which you pointed out.
         personally, I wouldn't ever let a surgeon near my ears if I wasn't 100% sure that he really knew what he was doing.

         Yet, some parents go by on blind trust...and that can lead to massive disappointment. So I'm cautioning parents with deaf children to take any doctor's advice with a grain of salt.

        •  I completely agree with that (2+ / 0-)
          Recommended by:
          ladybug53, sturunner

          Parents should be careful, but the technology and surgical techniques are so vastly improved that risks are really minimal if you are in a good hospital with a qualified surgeon.

          Voting straight party D 'til there's no GOP...
          Oh and the name is Jim, not Tim, the user name is a typo

          by jusjtim35 on Fri Nov 15, 2013 at 08:59:31 PM PST

          [ Parent ]

          •  Yeah... (0+ / 0-)

            But also keep in mind that not everyone has insurance, and as an result couldn't afford surgery fees, etc.
              In some areas and in different countries a hearing aid can be somewhat cheaper than a CI in the long run when you keep things like that in mind.
             Like with CIs, hearing aids have been improving by leaps and bounds.

              When I was just a kid they used to be just white noise makers (at least to me anyway). Nowdays I actually can pick out voices and music notes. and I had friends who wore hearing aids and then got CIs.  A few of them said that the quality of sound was about the same. Of course others said that they saw a marked improvement over their old hearing aids. So the truth is that the result isn't always the same for every person... it varies A LOT.

             Sadly enough, I've also known people who had CI failures and lost what natural hearing ability they had. And they were unable to get another CI because the surgeon they had was so utterly incompetent that he left behind a lot of damage. I think that's kind of every Deaf person's nightmare... trusting somebody to improve your life in some way only for them to royally f*** things up so much that it can't be undone.
             I think that's why I'm so leery at the thought of getting implants myself, actually.

             Not to mention I'm very content with being a deaf person. I wouldn't trade it for anything else in the world.

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