||Apr. 8th, 2002 12:46 pm|
http://news.bbc.co.uk/hi/english/health/newsid_1916000/1916462.stm|Somewhat uneased and disturbed...
Ok, that was bad phrasing. What I meant was that this made me instinctivly uneasy, but also made me think.
I don't see a problem with this, actually. I think this case is exposing prejudice about deafness really effectively. It's not as if they've deliberately cut the little boy's ears off at birth in order to make him deaf - he is and would always have been that way anyway. Doing otherwise would have meant breeding for a hearing child - a different child - to come into existence.
Well it's an odd one - I'm really not sure how to feel on it. On one hand, if they'd have been able to have a child themselves, the child would most liekly have been deaf; on the other, they've gone out of their way to produce a deaf child.
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.
As I see it, they had a baby that they believe they will be more able to care for than hearing parents would. It's made very clear in the article that they wouldn't have rejected a hearing baby. And, as ajva
quite rightly points out, it's not as if the choice was Baby A with hearing or deaf; the choice was Baby B with hearing or Baby A deaf.
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.
Yes, there's something of a difference between opposing surgery to correct deafness and refusing surgery to correct deafness. And I can see how the people in one camp could be mistaken for people in the other, confusing the numbers in each.
And there's also opposing 'the default view that having surgery to correct deafness must be a Good Thing, and that anyone who doesn't want surgery is mad and should be encouraged to have it For Their Own Good'. I bet that one happens, and gets mistaken for opposing surgery to correct deafness.
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.
they had a baby that they believe they will be more able to care for than hearing parents would
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.
Hmmm, yes, I hadn't thought of adoption in this case, somewhat strange since I'm adopted. That's a very good point...
Yes, you, zotz
are certainly making convincing points, and making me wonder if my initial reaction was wrong.
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.
Indeed. And as deaf parents they'll be able to teach the child about life in a way hearing parents couldn't, and they couldn't do with a hearing child.
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.
Of course he'll complain - he'll be a teenager.
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.
Agreed. This is a very tricky area morally, but I don't think there's much to be said for the identity-based arguments in favour of this described here - to me, the behaviour they've described is morally the same as taking a drug during pregnancy that makes deafness more likely, and I don't think that would be right.
I have fairly strong feelings on the matter for two reasons.
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.
I disagree with you on both points, but I don't mean to light a fire. Let me know if I step over the line.
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.
You didn't step over the line. I think I've answered the points you were making elsewhere, but argue with me if I'm not making much sense. :)
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?
If you're going sperm donor shopping you have to have thought about what you want in a donor and what that means for the child...
...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.
hearing or deafness even :)
It's not *just* a linguistic minority, because language isn't the only thing that it can be useful to be able to hear.
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.
It's not *just* a linguistic minority, because language isn't the only thing that it can be useful to be able to hear.
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 :)
I agree technology can go a long way to assist people with disabilities, and I agree that not enough public effort and funding goes into providing it. But I doubt whether every situation is amenable to it (particularly non-urban situations). Sure, it's possible to avoid such situations entirely for a 21st-century Westerner, but why choose to create a child whose options will be limited in that way? I'd rather do what I can to maximise my child's choices, if I can do it consistently with my ethics and without undue disruption of other things that are important to me.
If you take the position "Parents are obliged to bring into the world the healthiest child they can", watch GATTACA. If, conversely, you think parents have no moral obligations in this regard, read either Brave New World or Greg Egan's short story "The Cutie" (collected in Axiomatic).
I think these parents are in the wrong, but I find it one of the most difficult areas to reason about morally.
Very short summary of a long argument: I agree in theory, but in practice, most people want their morality to be consistent, and so it's possible to have useful and reasoned discussions on what positions might be morally consistent. Maybe I'll post an LJ about this at some point...
It's a very difficult decision, and not one I'd like to have to make. I don't think it's as simple as disability = bad, and healthy = good, and it's good to see a whole bunch of people talking about a news story like this, although for me it's certainly a case for situational ethics rather than morals because I'm not sure there's an answer that's always right.
I agree that there's a lot society could do to improve the lives of disabled people, but I think that deafness is a disability, and that disabilities are by definition disadvantageous.
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.
Yep, I can see what you mean, and I agree what you say about society.
Baby Gauvin McCullough is now four-months-old, and has a slight amount of hearing in one ear.
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 ;)