Pro choice.

I have debated long and hard about whether or not to respond to the comments by Rob and Allison to my previous post. As some of you probably know, there is a divide among deaf and hard-of-hearing people about whether cochlear implants are an exciting innovation that can provide substantial benefit to those who obtain them, or are instead a greedy marketing ploy by evil drug companies who seek to inflict a "horrible, invasive" procedure on Deaf people who should not be forced into hearing.

As you can probably tell, I fall into the former category. Truth be told, I don’t fully understand the latter, because I’ve never lived as a Deaf person and have derived enormous satisfaction and pleasure from sound all my life.

I was first diagnosed with a hearing loss around the age of 6, and started wearing hearing aids at 9. I was already "oral" when my hearing started to deteriorate, and have remained so throughout my life. I don’t sign, and because of my tiny field of vision, it is very difficult for me to follow hand gestures. I read lips, but not nearly as well as other deaf people I know (the small "d" in the word there is deliberate, by the way, as is the "D" in the previous paragraph). I talk on the phone, I listen to music, I go to movies, and while I miss a lot in all those settings, I love being able to hear what I can in each of them. To hear more, and better, would be amazing!

Furthermore, as I mentioned in my previous post (and as you surely know, if you've been reading along here for a while), I’m going blind. Right now, I can’t hear much of anything in my right ear other than indeterminate environmental sound. With my current level of binaural hearing, it would be exceedingly difficult for me to hear and understand many of the auditory cues on which blind people rely in elevators, on street corners, and when using public transportation, just for example. If a cochlear implant can significantly improve my functional hearing, this may someday be the critical factor in my continued ability to live and function independently, as my vision deteriorates and I necessarily become more dependent on my hearing for communication and navigation.

Rob and Allison, I respect your personal decision not to choose CI surgery. But please don’t demonize this procedure, which in fact has a relatively low risk profile and a high rate of success for people in circumstances similar to mine. It is not the least bit helpful for you to attack me for choosing to hear -- something I have done all my life and enjoy greatly -- or for desiring to hear better. Your suggestion that I just want to hear in order to "fit in" is simply insulting, to me as well as to others who have chosen CI surgery to serve their own goals and needs.

Nor does it facilitate my decision-making process for you to warn me of the horrible, invasive nature of the surgery. My doctor and audiologist are presenting me with broad information, and my family and I are asking plenty of questions. Of course I’ve "done my research," as you question, and I’ve gotten quite a bit of feedback, both positive and negative, from other CI users. If, after the evaluation process is completed, I determine that the surgery is safe for me, and that the implant offers me a strong likelihood of improved hearing, then I will proceed, knowing full well the consequences of my decision.

Comments

[robwilks]

Mad, thanks for your post responding to Alison and mine's comment. You do give food for thought.

It was not my intention to "insult" you. Like I said, I do have complete respect for the fact that whether or not to have a CI implant is entirely and utterly *YOUR* choice.

The reason Alison and I said what we did, was because in your previous post, you were focusing merely on the positive aspects of having a CI implant, and we were unsure whether you were aware of the negative side of things. It appears you are, so that's fine.

While I may not agree that CI implants are absolutely necessary at all, I do wish you all the best, and do understand your reasons for choosing to have one.

Good luck with everything, and I hope you get the desired results.

[Alison]

Mad, just want to say one thing. I hope you are meeting lots of Usher people, and continue to do so.

[mad]

Thanks, Rob. I really appreciate your response.

Alison, I'm curious what you mean about meeting more people with Usher. Would you mind elaborating? I have met a few other people with Usher as a result of this blog, but I'm not sure how those connections bear on the CI decision.

[Alison]

Hi again, my comments weren't necessarily in the context of CIs, but will admit what you wrote did prompt me. I didn't elaborate, as I'm trying to respect this is your space, you are laying your thoughts out. I don't even know you apart from what I've read here. Even I can see its your life :)

Going to my comment re contact, I was just trying to say, I hope you are in contact or better still friendship with people who have similar experience to your own, just from a support angle, and to explore. Its plain obvious you get this from family, friends, but hope you get the shared experience bit and even opportunity even to be exposed to Usher humour? Why miss out on the good bits? :)

From your posts, comes across an ongoing anxiety relating to vision loss. Again I'm drawing my own conclusions, but I'm not for a minute shunning you. I was questioning in my head, how much is this CI stuff is related to anxiety over sight?

Yes I don't have a bloody clue where you are with this, apart from what you've written here. Just saying hey I hope you have a safe environment to explore, gain support, and whatever. Even have a pint in aid of breaking Steve's glasses, and all the other crap that happens. Don't mean to patronise, just a simple question re motivation, and believe it or not come to care about what happens to you simply by reading this blog.

As with all of life's predicaments, I do believe that people can gain lots from others in a similar boat to themselves.

Ultimately, despite what I might come up with against CIs and my feeling towards them (both professionally and personally), and yes I will admit my first reaction when I read your post was: ARGH NO DON'T DO IT! However, my feelings are besides the point. Even with my Deaf stance, I do get why people might want to go for a CI and hear a bit better.

If its the other side of the fence you want to explore, I think Harlan Lane, Paddy Ladd etc will have a book published on CIs soon.

Now, have I completely shot myself in the foot, and you hate me completely?

Next time you are in the UK, please hook up with Rob, myself and a few others for a few drinks.