Friday, June 16, 2006

316: rainmound and the demon queen

The Demon Queen is a friend of mine at work; she had the habit of criticising the fantasy novels I still occasionally read ("He stared up the mountain trail, conjuring a fireball to melt the snow.") Sometimes it's REALLY nice to think of evil being localized. Anyways, she made fun of a book with the back cover blurb bleating "The Demon Queen Attacks!" Then she walked around the office trying to look like a Demon Queen. It was hilarious.

This is an essay to talk about cochlear implants, and my own internal wrangling with the concept of Cochlear Implants. I guess they are part of the Deafhood series, but they don't feel like it, because CI and Deafhood really have nothing to do with each other. This is why Deafhood has such a hard problem dealing with CI's. The closest connection they have is that CI is used as an excuse NOT to discover Deafhood, to in some ways pretend an individual isn't Deaf (even though the contracts each family or child must sign, to get serviced, say clearly "I know my child will still be Deaf.") But this is not true. The individual is still different from others in the world. They still have special equipment. If something goes wrong with it, they are as Deaf as you and I. (And isn't that yet another reason to learn ASL? I'd never get an implant without knowing ASL first: it is the only thing which would make me independent.)

Yet the more and more people get them, the more and more I think about it, which is why I had a discussion with the Demon Queen about children and parents and cochlear implants.

Appropriate to her title, the Demon Queen enjoys playing Devil's Advocate. Talking with her can be like verbal fencing, as you dance around all sides of an issue. In a good conversation I can flesh out her thoughts on all sides of things. We go for little walks for break, and get soda, and gossip a little, and then one of us begins thinking of something...

I had opportunity to visit a Cochlear Implant center recently. I saw so many children with implants... I do not like the way they look; I never have. They were designed by hearing people, without much consultation to Deaf people... I'm sure we could design something much more attractive. Especially for women, with all the gear women usually have on their heads anyway. But the word opportunity kept coming up, in posters, in conversations, a word which I have also had much in my mind lately and which hung in my mind as I spoke to the Queen. How to best ensure opportunities for the future? What chances should I take? How do I measure what's right and what's not? Do I want a Cochlear Implant? Would I be better off if I spent a couple years learning to use these crude machines, having the surgery? Would I spend the rest of my life imagining small cracks radiating out into my skull, victim of incompetence? (There are quite a few such victims. Some have become leading speakers in the field.)

The Demon Queen took the position of Opportunity, accidentially, during this discussion, amplifying the thoughts in my skull. Should she have children, would she provide them with the implant? (I did not ask, were she a Deaf woman, would her opinion be the same?) But Opportunity guided her response. The best opportunities, the most chances for Development.

Some of the strongest responses I had, I didn't speak. I'm not very good, yet, in conversation. But it seemed to me that Life itself guided the chances for development, and people with different lives most often were able to do the most special things. It seemed to me that all that was being done was giving the child the widest possible field for life to happen within. No guarantee the baby will have improvement in their hearing, after all; they quite possibly will be even more Deaf than before. But they will have the chance. Is this worth it? I don't know. Frankly, I wake up in the morning these days and look outside my window and think, from the way every politician's talking, and global warming, and everything else, we might all be living in chaos tomorrow.

Should that happen, I'd rather know ASL. It doesn't die when the batteries run out (and when will someone make rechargeable hearing aid batteries? They have them for implants. I could possibly quickly work up a solar-charger knockup...) But if we had a guarantee, signed on the bottom by the Goddess, that the world would continue tomorrow? That the situation wouldn't change? That I am the proud beneficiary of a world dependent on telephones and breathless executives?

Is my Deaf identity so thin that I'm afraid of a rather silly-looking thing implanted in my skull?

Ridor had his "borg" comment. We're already borgs, all of us. We all have blackberries and sidekicks. We probably going sterile from the radiation at our waist (anyone remember THAT article?) And when was the last time you had a Year Without Computers? Many of us already have hearing aids. What's so different? Is it just a slippery slope? For me, one of the biggest fears is becoming eternally dependent. I can't fix this thing. I can't put it in and take it out. I'll always be dependent on someone else, should something happen. (I've learned to do some things with my hearing aid... which is cool. But they never teach us how to do it ourselves, have you noticed? It's another form of oppression, like the CI's woman I knew who was very, very intelligent but still waited for the handicapped bus... at the age of 23... I stomped away from her, furious, and walked stiffly across the field...)

But what about a baby born to hearing parents? Who didn't have time to learn ASL? Working two jobs? Unless we're all willing to start a fund to support such parents while they learn, should we consider that a cochlear implant might keep them from developing problems due to lack of stimulation from the communication center of their brain?

I have so many questions, after that conversation; the Demon Queen seemed almost startled by her own vehemence, and I think she too was thoughtful. Any answers out there, Gentle Readers? One thing seems clear: if Cochlear Implants are the guarantors of Opportunity, then ASL - and Deaf culture - are guarantors of Independence. And it is quite possibly to choose one over the other.

But you know why they don't go together? And this is my theory... but I think it's true. Because some assholes treated Deaf children like lab rats. They decided the children shouldn't learn ASL. They decided to EXPERIMENT. To experiment on something, you need to remove all other variables to determine their success. They had two choices. They could include the Deaf community to make sure all the children knew ASL, so that their results would not vary. They could force those children to not learn ASL. Either of these would have sufficed for an experiment. They chose the latter. As a result Cochlear Implants were a technology, a yong to the chinese word, without the Deaf ti, or foundation. Even today, the most horrific images for Deaf people are of Deaf children getting experimented on. Had they involved the Deaf community in this, would we still be having this conversation? Or would the equipment be different in a fundamental way, uniting both Opportunity and Independence?


Anonymous said...

This may be beside the point, but my thought is, how can parents "impose" a cochlear implant upon their child(ren)? It's not a flu shot, it's pretty hardcore (and dispensable) surgery. And the implants+surgery cost money, which someone has to pay and, in my opinion would be better spent helping out parents of Deaf kids who need to learn sign language (for example).

Joseph Rainmound said...

thats not a realistic solution for most parents in the framework they're given today. parents are told by both Deaf/ASL advocates and ci doctors that the best solution for their child is early communication. for two parents who don't know ASL at all, CI will be very tempting (how else can their friends, family, etc. be involved in the child's life?)

yeah, it's pretty hardcore surgery. but parents are told this is the best option. it reminds me of when my mom was told that if she allowed me to learn ASL I would become retarded. and it will be very hard to convince a parent to take steps which might result in their child being harmed (according to what doctors say.)

is it true? no. I believe that since it's impossible to tell whether the results of the surgery are worth it, the child should be given ASL access as a child and allowed to make the decision itself when it gets older.

but yeah, ASL is cheaper than the surgery by far, since it's really repeat surgery.

Anonymous said...

Solar-rechargeable hearing aids exist... in Africa.

Pam said...

From a hearing person's point of view, I'd say that ASL is not only cheaper, but also fun and interesting to learn (certainly more fun than having one's child get surgery). And it's a language for goodness' sake. Who in their right mind would say 'no' to the opportunity of learning a new language?
Out of curiosity, what proportion of the doctors recommending CI are actually Deaf or have extensive first-hand experience with Deaf issues?

Joseph Rainmound said...


thanks for your comments. I wonder if you've thought of the following:

*health insurance pays for CImplantation. It does not pay for ASL classes which can run you quite a bit (my partner's paying $250 for six weeks.

*ASL classes aren't available everywhere.

*some parents do not have the leisure time or money for child care; some work more than one job and don't have the time for class at all. Some can't afford the extra gas that month, much less the cash.

I agree you're correct that ASL is the best option, but again, it's pretty damn expensive... when the CI is miraculously totally covered by most insurance companies. (Hearing aids aren't, anymore, if they ever were.) It's also tough for poor families to access.

Pam said...

I am sorry, I had NO IDEA CIs were covered and ASL classes for those who need them aren't (it seems a bit backwards). This fact alone tells a lot. So much for giving people a choice!
Thanks for educating me (I'll shut up now)

Joseph Rainmound said...


PLEASE don't apologize! I'm very glad you brought it up because a lot of people don't understand that point.

Right now I have a 13-year-old hearing aid and cannot afford new ones. Insurance doesn't cover it, and the cost in the thousands for the good tech. These were a contribution from the Lions Club at a time when my mother was struggling through two jobs to make ends meet, and I am very grateful for them.

breenie said...

Agreed, your posts are well intentioned, Pam.

I had to choose my eyeglasses prescription coverage over hearing aids. I still haven't fixed my hearing aids for few months now. *sigh*

ASL is more widely accepted now and with sprinkles of deaf culture and history, hopefully people will be more educated when it comes to their kids should they be deaf.

John said...

Many parents were informed by the Doctor who influenced their decision to have cochlear implants ... and no mention of British Sign Language or little mention ...

some deaf organisations choose "up to the parent decision" made me mad about it. The parents do need enough information ...

more cochlear implant businesses get bigger, and bigger and become globalization business, want more money, profits etc...

they dont care about deaf children who grew up and realised it is too late ... they got cochlear implants ...

now more parents want TWO cochlear implants for each child - what is wrong with these hearing people?

deaf children do have their own say in this matter ... they do have human rights.