Ermmmm | Apr. 8th, 2002 12:46 pm | |
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http://news.bbc.co.uk/hi/english/health/newsid_1916000/1916462.stm Ok, that was bad phrasing. What I meant was that this made me instinctivly uneasy, but also made me think. | ||
I posted this, not because I found it specifically wrong, but because it made me think, without being able to draw a firm conclusion either way.
The whole 'opposing surgery to correct deafness' bollocks makes me want to cry with frustration, but the couple in question do not appear to hold that view. If, in fact, anyone in the movement actually does believe this, and isn't just a figment of sloppy journalism's imagination.
If the baby grows up to have a reduced quality of life because it's deaf, then I see that as the fault of prejudice and lack of understanding in the people in the soceity around it. It's not the fault of the parents.
From: Date: April 8th, 2002 - 05:57 am (Link) |
If the baby grows up to have a reduced quality of life because it's deaf, then I see that as the fault of prejudice and lack of understanding in the people in the soceity around it.
Well, that depends. Not being able to hear cars coming towards you can be problematic at times.
I'm also a bit concerned about the possible other effects. The sort of deafness involed probably results from a deficit of neural crest cell migration. These don't just form parts of the hearing organs, but also form (IIRC) most of the face and the vault of the skull, all of the body's melanocytes and endocrine glands, and the autonomic nervous system. Possibly more, as well - its been a while since I looked at this stuff. I wouldn't necessarily assume that it won't have other health effects. "playing with fire" is the phrase that comes to mind, although maybe I'm just being squeamish.
From: Date: April 8th, 2002 - 08:08 am (Link) |
But it's not a case of "baby A can either be cared for by hearing parents or deaf parents, and deaf parents will be more able to care for it", is it? If the aim was to reduce the number of deaf children being cared for by hearing parents, the best contribution they could make would be to adopt. That clearly isn't what they're about.
From: Date: April 8th, 2002 - 08:25 am (Link) |
I think I'm having trouble distinguishing 'deaf people are inherently inferior people' (which I don't believe) from 'deafness is a disability that generally reduces the quality of life of people who suffer from it' (which is certainly arguable). Actually, this ought to be familiar ground, as I tread it whenever I consider any disability, but I'm not sure I've ever resolved it to my satisfaction.
Date: April 8th, 2002 - 05:30 am (Link) |
The boy can't grow up and then angrily demand to know the justification for making him deaf, as it wouldn't have been him if it was a hearing child.
I'd say it's slightly problematic, though. Clearly they've thought it through and their reasons sound good, but it's a bit Brave New World - intentionally producing people with artificially limited capabilities because in your view they'll be happier that way. Is it healthy to try to have that much control over your children? Is being after a deaf child any better than being after a tall muscular blonde blue-eyed one?
Dunno. Answers, on a postcard please, into the round thing in the corner, for all the good they'll probably do. I declare this can of worms officially open. God bless her and all who sail upon her.
From: Date: April 8th, 2002 - 06:23 am (Link) |
From: Date: April 8th, 2002 - 07:33 am (Link) |
1. My mum has been a lipspeaker/sign language interpreter for many years now, and I've done human aid to communication courses and have a certificate in deaf awareness myself. I've spent a lot of time in the deaf community - in a deaf church, a deaf club and with my friends - I used to babysit for their kids, one child was hearing, the other two were deaf.
2. The wider issue about people feeling that it's wrong to bring a disabled child into the world appalls me.
Having spent a lot of time in the deaf community, I've met many people who believe in the social model of disability - deaf people are merely a linguistic minority, and other people disable them by not learning their language, and by treating them as they do any other group of people whose language they don't understand, with fear, misunderstanding and by shouting at them in the hopes that they might understand if they're shouted at. I agree with them, they are a linguistic minority and that fact that BSL isn't a recognised language in britain seems to suggest that people still want to disable them by telling them they have a medical problem, not a language with its own grammar, sentence structure....
The idea that it's somehow morally wrong to have a disabled child gets me very angry. I have friends whose mothers could have chosen to abort them and didn't. I'm glad they're alive. I wonder if anyone would have chosen to have me? judging by the reactions I've had from friends in similar discussions, I suspect not.
From: Date: April 8th, 2002 - 07:55 am (Link) |
I don't think the description as a "linguistic minority" captures it properly. A hearing person could be brought up speaking BSL, and later learn to speak and understand English. If you're deaf, you don't properly have that option; you can't choose to learn a new language and then call me on the 'phone. Its the loss of that option, among other options, that makes deafness a disability. If a deaf person would prefer to be able to hear, that makes their deafness a medical problem for them in my book, even though BSL is a complete language in and of itself.
And I think there's a very important moral difference between choosing to carry a child to term, knowing that it will have a disability, and deliberatly setting out to increase the probability that a child will have a disability. They state very clearly that they chose to do what they did precisely because it increased the chances that the child would be deaf. I don't think that's right.
From: Date: April 8th, 2002 - 11:14 am (Link) |
The wider issue about people feeling that it's wrong to bring a disabled child into the world appalls me.
I don't think anyone's arguing that. I hope not. They do seem to have made a rather larger decision about someone else's life and health than is usual for parents, though. I, for instance, am perfectly free to degrade my hearing by any means, and that's fine. Would it be OK for someone else to make that decision for me, and to act upon it?
From: Date: April 8th, 2002 - 09:28 am (Link) |
...to answer the question, no, I don't think it's right for someone to make that choice for you...
...but having made the decision that insemination rather than adoption was the choice for them it would have been very odd for them to decide that the childs hearing of deafness wasn't a relevant factor.
From: Date: April 8th, 2002 - 09:43 am (Link) |
From: Date: April 8th, 2002 - 08:03 am (Link) |
If they wanted to have a child without pre-selecting whether it would be deaf or not, and raise the child with ASL as its first language regardless of whether it was hearing or Deaf, I'd support them. If they arranged a sperm donation from some random person and then found that the child was likely to be born deaf, I'd support them in not having an abortion. If they chose the sperm donor because they thought he made a great candidate in other ways, and he just happened to be deaf, I'd support them. But deliberately selecting a sperm donor *because* he has a higher likelihood of producing a deaf child does strike me as ethically dubious.
From: Date: April 8th, 2002 - 09:05 am (Link) |
I'm biased. I know I'm biased, but having a fire alarm system that sets off a device deaf people carry with them when they go shopping doesn't seem to me to take lots of effort and money. Me calling typetalk, or learning how to use a textphone/minicom, doesn't seem like a big effort when I'll do the same to make comminicating with my german friend easier.
There are so many things that can be done with technology and a tiny bit of effort that could make it almost socially irrelevant, but they aren't done because deaf people are seen as disabled so it's _their medical problem_, not society's fault because it hasn't yet got used to the idea that one in seven people in the uk are hard of hearing or deaf.
I'm of the opinion that making any choice about the characteristics/gender etc. of a baby is stepping into a moral minefield, so I think I'm agreeing with you about that :)
From: Date: April 9th, 2002 - 01:01 am (Link) |
From: Date: April 8th, 2002 - 09:04 am (Link) |
I think these parents are in the wrong, but I find it one of the most difficult areas to reason about morally.
From: Date: April 8th, 2002 - 10:23 am (Link) |
From: Date: April 8th, 2002 - 11:07 am (Link) |
From: Date: April 8th, 2002 - 11:33 am (Link) |
In that sense, I do think it's as simple as disability = bad, and healthy = good. But I also believe that society should be adjusted to be a better fit for disabled people, and that prejudice against disabled people is wrong, and I hope you'll agree that this isn't an inconsistent position.
From: Date: April 8th, 2002 - 01:14 pm (Link) |
The couple have said they will let him decide when he is older if he wants to wear a hearing aid.
Having been largely ( undiagnosed till around 6 ) deaf myself I think they're missing something inportant. The brain needs stimulation of the senses from an early age if it is to be able to function as a ' normal' hearing person, it's not a choice the child can make at a later stage and expect it to be equivalent to having been able to hear all along. The brain just doesn't grow like that, neuron connection need to be reinforced early, else it _could_ end up as odd as mine ;)
My deafness was almost totally cured by 9, and later I went on to become a sound engineer, ( well it did mean that sounds fascinated me, still do to an extent ) nevertheless I'm well aware that I don't hear things in _quite_ the same way as other people.
Personally I think they're being a little short sighted ( sorry about the metaphor ;)
From:Date: April 8th, 2002 - 05:07 am (Link)