People with disabilities and culture

[English assassin]

OK, before I start, I'll put a health warning on this one before the mods do. Anyone reading this thread might themselves have a disability, or be related to or care for or have a friend who does. So please choose words, and indeed points of view, carefully.

In another thread, Lemur made a remark in passing that the number of children being born with Downs syndrome had fallen dramatically, since approximately 90% of pregnancies diagnosed with Downs syndrome now end in abortion. (In the US, presumably, in the UK it may even be higher). That shocked me.

I was reminded of a debate in the UK some years ago, concerning cochlear implants. These can be implanted in profoundly deaf babies, and essentially recreated an ability to hear and so live a "normal" life. Good news, no? Well, at least some profoundly deaf people thought not. They argued there was a deaf culture and a deaf community and these implants spelt the end of it. In case that sounds daft, (and it did to me at first) put it this way: these people didn't see deafness as a disability, just as part of their identity. Now, isn't that a good thing?

(Here is an update on the story: http://www.newscientist.com/channel/...mg19225795.000 This sums it up:

Geers agrees deaf culture may be under threat, but says "there is no hostility here. People are doing this so that deaf people can live in the hearing world, marry who they like, and work where they like, and so that hearing parents can have their children as part of their culture. But it must seem like genocide to the deaf."

And in a similar vein, returning to Downs syndrome and allowing myself to generalise, people with Downs generally seem happy, don't they?

So, my question is this. I trust we would all agree that, given a person with a disability, we expect society to make reasonable adjustments so that they can function as "normally" as possible within it. No one would say that it was reasonable that, say, wheelchair users are restricted in their choice of jobs because public transport is not accessible. (We might say it was inevitable for a while in the real world given the cost of upgrading the entire transport fleet, but that is a different matter). In that regard we expect to integrate people with disabilties, (even that sounds a bit patronising doesn't it). And we would certainly encourage people not to see a disability as a barrier or a negative thing, or even as the most important thing about a person.

Does this enlightened approach to disability run counter to attempts to prevent or (in particular) "cure" disability? It seems to me there are three cases:

Disability arising because of some external event. Surely no one would say we should ignore, say, health and safety rules, so that people continue to have accidents that put them in wheelchairs.

"Curing" an organically arising disability (ie the cochlear implants). I think this is tough. The more I think of it the more I think there is something in the "deaf culture" argument. And not just for the deaf people themselves but as an enrichment of society as a whole. Can we value deaf people equally, and at the same time support a medical procedure that will remove them (as deaf people) from the future population? That implies surely that we do NOT value them as equal to a hearing person. But equally if I had the choice I know very well I would rather be able to hear than not. Have I gone quite mad?

Terminating pregnancies where the fetus may be disabled (NB anyone who says this is a non issue because all terminations are wrong is not moving the debate forward ) This I think is REALLY tough. I hadn't thought about Downs until Lemur linked to the figures. But whereas you can clearly argue the cochleal implant is in the interests of an otherwise deaf child, I really don't think you can argue a termination is in the interests of a child with Downs. Some disabilities, sure, the quality of life may be so shocking that you can make the case, but as I said above people with Downs seem to live happy and fulfilled lives. And yet 90% of them are not being born.

There is a lot of cobblers spoken about eugenics but actually, what is the intellectual distinction here, other than that we in fact do not value people with disabilities as highly as we like to think we do?

Tricky stuff I think

[Quid]

As I lack time at the moment just a few short notes and first thoughts about certain particulars. I might come back later when others have commented on the whole, rather interesting and thought provoking matter.

In another thread, Lemur made a remark in passing that the number of children being born with Downs syndrome had fallen dramatically, since approximately 90% of pregnancies diagnosed with Downs syndrome now end in abortion. (In the US, presumably, in the UK it may even be higher). That shocked me.

I found that shocking also, actually.

I was reminded of a debate in the UK some years ago, concerning cochlear implants. These can be implanted in profoundly deaf babies, and essentially recreated an ability to hear and so live a "normal" life. Good news, no? Well, at least some profoundly deaf people thought not. They argued there was a deaf culture and a deaf community and these implants spelt the end of it. In case that sounds daft, (and it did to me at first) put it this way: these people didn't see deafness as a disability, just as part of their identity. Now, isn't that a good thing?

I, personally, do not find this part particulrly tricky. If I had the chance to make my child be able to hear, I would do so without hesitation. I am then trying to accommodate my child and not the deaf. Should not that be the purpose? I find it good and a hallmark, so to speak, of society, that deaf people do develop a culture and do feel 'normal', to the most part. Yet again, a person that is deaf will inevitably face some sort of discrimination. If I have the chance to circumvent that, I would.

Terminating pregnancies where the fetus may be disabled (NB anyone who says this is a non issue because all terminations are wrong is not moving the debate forward ) This I think is REALLY tough. I hadn't thought about Downs until Lemur linked to the figures. But whereas you can clearly argue the cochleal implant is in the interests of an otherwise deaf child, I really don't think you can argue a termination is in the interests of a child with Downs. Some disabilities, sure, the quality of life may be so shocking that you can make the case, but as I said above people with Downs seem to live happy and fulfilled lives. And yet 90% of them are not being born.

Tricky stuff I think

Very tricky. I would have to agree. To be brutally honest, I would not know what I would do if a doctor told me my child would be born with Down Syndrome. I also think that people with this particular disability seem happy in general. Tough.

Other disabilities such as extreme mental ones where the child would effectively have little chance of survival or would be in a 'vegetative state', I would have much less quarrel to terminate the pregnancy.

This is clearly the perspective of a man rather than a woman. The last say would always go to the one actually carrying the child. I would live with whatever decision were made, naturally.

Also, my opinion clearly seems the 'easy way out' to many. However, I would dispute that. To rid oneself of a child no matter what, cannot, should not, and must not ever be taken lightly.

Quid

[Mooks]

If I had a child that was a vegetable. I would kill him. No point in even living if you cant even feed or think for yourself. I know I would want my family to kill me if I was a vegetable.

[KukriKhan]

OK, before I start, I'll put a health warning on this one before the mods do. Anyone reading this thread might themselves have a disability, or be related to or care for or have a friend who does. So please choose words, and indeed points of view, carefully.

Brilliant opening post, civilly couched. But there are 5 question marks - should we tackle all those questions, or limit debate to 1 or 2?

If I had a child that was a vegetable. I would kill him. No point in even living if you cant even feed or think for yourself. I know I would want my family to kill me if I was a vegetable

So, one presumes you have a "Living Will" with instructions to your family about what to do if you become 'a vegetable' tomorrow? And who decides?

[Samurai Waki]

If I became a vegetable tomorrow, and was diagnosed as having a high likelihood of never coming out of a vegetative state I don't think I would have much quarrel with someone pulling the plug. Now, if they said there was a decent chance I might pull out of it, I'd want them to give me a year or two before they pulled the plug.

As for downs syndrom. Tricky. I think I would be terribly sad if a pregnancy had to end that way... but every parent wants their children to be born as healthy and cognizant as possible. With a Downs Child, its something that kind of follows you until death, and the thought of having no heirs to your name is another nail in the coffin for me anyways... Ya know... honestly. I don't really think I'm the one to answer such a question, I'd have to ask my fiancee what she'd want to do.

[naut]

Pffft. Touchy topic, not sure what I'd do if in a disabled situation. I guess I'd try to do whatever would be a comprimise between morality and practicality.

[KukriKhan]

If I became a vegetable tomorrow, and was diagnosed as having a high likelihood of never coming out of a vegetative state I don't think I would have much quarrel with someone pulling the plug. Now, if they said there was a decent chance I might pull out of it, I'd want them to give me a year or two before they pulled the plug.

Who, exactly, are these people to whom you entrust the power of life and death over you?

For me, this is the unifying issue to addressEnglish Assassin's opener. I'd like to think that we agree that the perfect decider is the affected human him or herself. The question then is: who decides on behalf of those who cannot express themselves in a way we (society at-large) can understand? Parents? Doctors? Lawyers? Judges? Politicians? Random Polls? Gods Will?

[Samurai Waki]

Who, exactly, are these people to whom you entrust the power of life and death over you?

My Fiancee First and Foremost. And I was particularly stern about it when we had that conversation, I told her that it would be grounds for a divorce

In the event that she somehow dies, then it would be up to one of my brothers, which we've already agreed a long time ago that if any one of us ends up a vegetable we'd rather go in a swift end.

Of course if the option of removing my brain and putting it into a 100 ton Cybernetic Killing Machine is available I'd go for that option first.

[Big King Sanctaphrax]

I would say that giving children cochlear implants is generally a good idea, on the whole. If we were forcing adult deaf people to have the implants, it would be a different matter, but we aren't, are we? We're saying that, on balance, it's likely that a child would prefer to be able to hear. If he decides he does want to be deaf when he's an adult, he could have he implants removed. I must say, though, if my parents told me tomorrow that they had given me cochlear implants to allow me to hear, and that I was "actually" deaf, I wouldn't be in a rush to get it reversed.

As for the Downs issue, I agree that it does seem wrong, if we just consider it from the point of the welfare of the child. But it must be borne in mind that raising a child with Downs syndrome is even more work than raising an ordinary child, and I don't think it's right to force that upon people.

Another interesting issue in a similar vein is autism. Many austistics are extremely resistant to a lot of the treatments practiced, as they believe it to be merely a different mental paradigm, rather than a disease. This, I think, does carry some weight.

[BDC]

Well the issue with Choclear implants is they are completely optional, you won't get ill without them. Yet they still involve an operation. So bit of an ethical issue there.

A recent study also showed that they work much better if they are implanted at about age 1, rather than 5 or so as is usual now. No way a 1 year old can consent though.

And then you have the whole 'deaf community' thing. Don't know where that's going. A lot of people with deaf children though aren't deaf themselves, so there is less issue there.

[Goofball]

Geers agrees deaf culture may be under threat, but says "there is no hostility here. People are doing this so that deaf people can live in the hearing world, marry who they like, and work where they like, and so that hearing parents can have their children as part of their culture. But it must seem like genocide to the deaf."

That could possibly be the stupidest thing I have ever heard (no pun intended).

We are not rounding up deaf people, putting them in camps and gassing them.

We are using modern science to correct a physical problem.

If we stop all hip replacements is that considered "genocide of people who are in constant pain whenever they try to walk?"

And if a deaf culture exists, it began and exists more or less as a support group to help people with a physical disability overcome that disability and find fellowship among themselves and their families.

If we are able to eliminate the need for that support group, then there is no longer any need to perpetuate it.

[English assassin]

Yeah OK the G word is being misused again.

And if a gay culture exists, it began and exists more or less as a support group to help people with a abnormal sexuality overcome society's exclusion of them and find fellowship among themselves and their families.

If we are able to eliminate the need for that support group, then there is no longer any need to perpetuate it.

I exaggerate to make the point, and don't mean to suggest that you would every say or think such a thing.

But in fact the last paragraph illustrates the dilemma neatly. Do we "eliminate the need for that support group" by eliminating the disability, or by eliminating society's problems with the disability? Who has the problem, the disabled person, or society? Some adult deaf people say its not them. Are they wrong?

[Goofball]

Yeah OK the G word is being misused again.



I exaggerate to make the point, and don't mean to suggest that you would every say or think such a thing.

But in fact the last paragraph illustrates the dilemma neatly. Do we "eliminate the need for that support group" by eliminating the disability, or by eliminating society's problems with the disability? Who has the problem, the disabled person, or society? Some adult deaf people say its not them. Are they wrong?

I understand your point. But there is a big difference between sexual orientation and not being able to hear because you are missing a part of your ear.

Yes, I know it's subjective on my part, and the homophobes among us would argue that homosexuality is a birth defect ( while at the same time maintaining that we can discriminate against them because homosexuality is a lifestyle choice) that we should correct if we can.

A homosexual can still take part in any of the "normal" activities in life that a heterosexual person can, if he or she so chooses.

A deaf person can't.

[Don Corleone]

Well, EA, interesting topic. The American Left would brandish you a misogynist and a fascist for even raising the question. How dare you suggest that a woman that makes the brave decision to do what's right for a handicapped fetus by terminating it, shouldn't?

This is why I don't understand the outrage over eugenics. We already have it, at the fetal level, why not allow it at the moment of conception?

Example: If I want a girl, my wife and I don't have the legal right to tell my doctor to inhibit male zygotes from developing. But I DO have the right to abort a fetus that is male. As it takes until approximately week 15 to determine the sex, doesn't this seem a bit bass ackwards? If I was a hair more cynical than I already am, I'd say abortionists have gotten their horse to the front, as they don't make any money from genetic selection, but fetal selection, aye there's gold in those hills for them.

Personally, I think this is one of those slippery slope arguments that actually holds up. Parents already abort children for being blind, deaf, developmentally challenged (mentally retarded, translated out of PC-ese). How much longer before we abort near sighted children?

And before you think I'm off my rocker on another tirade, I'd like to remind you all of a column that ran in the NY Times. One of the members of their editorial staff wanted a child. She got impregnated at a clinic, and as is like to happen with those fertility drugs, actually was carrying twins. Because she could envision leaving one child with a sitter all night, but two would cost too much for a sitter and hence intrude on her constitutional right to go clubbing all night long, she aborted one. She chose the boy because... he was a boy, of course!

[doc_bean]

Man, hard questions here.

To be perfectly honest, I wouldn't know what I'd do if I heard I'd have a kid with Down syndrome. I know one guy that has it and he's reasonably happy (I'd assume), and his parents had to other children, BUT they still have to make huge sacrifices for their kid, and one of their biggest worries is what will happen after they die (well, at least he's got siblings who could take care of him I guess). Something like that really puts a huge strain on a family.
It's not just about the kid and its quality of life, it's also about your family, and any other kids you (plan to) have. Having a disabled child is not always fair to them either.

But like I said, I don't know what i'd do, it'll depend on what the misses says, and what the circumstances (financial amongst others) are we are in.

That said, some of these things I hear (and are written here) make me worry again about how obsessed our society is with 'perfect' children. Now, physical handicaps or Down's Syndrome are clear examples of 'disabled' people, but I saw a report on tv recently were they stated that 'manic depression is the new ADHD' and that God knows how many kids should be put on drugs to 'help' them. It does make me wonder how much attention we still pay to the uniqueness of an individual, as opposed to how good they are compared to some standard of normality.

[Louis VI the Fat]

Brilliant subject!

As to Down syndrome - I would have any unborn child of mine diagnosed with it aborted. At the expense of never having a nights' peaceful sleep anymore for the rest of my life.

Deafs. My initial reaction too was that not curing it to keep deaf culture intact is daft. Thinking about it a bit more, I'm not so sure anymore. I cannot simply dissmiss the counter arguments.
There are so many angles to it. Food for thought...

[doc_bean]

How much longer before we abort near sighted children?

24 years ago, if they had know...

EDIT: I'd most likely keep the deaf child, forgot to add that.

[rory_20_uk]

Trisomy 21 (downs) is a genetic defect, pure and simple. Most of the other trisomies result in intrauterine death (although some do survive albeit with massive physical and mental defects).

Yes, the children are happy. And with modern medicine we can correct the heart "disability". Is that wrong - sure they'll die with a massive ASD or VSD, but is that somehow different as it is fatal?

Others such as systic fibrosis. Yup, the children are cheerful, and with modern medicine we can put off the side effects of pancreatic failure and emphysema, recurrent pneumonia and eventually death for longer.

As happy as they are, should society have to pay and pay for conditions that can be screened for? If the family have decided to have children that require masses of extra money, shouldn't they pay?

And then integration. My sigh is not great. I can't be a pilot due to this. Against my human rights? Possibly - but sensible.

Ambulance drivers can't have type i diabetes in case they collapse at the wheel. Same with train drivers. Again, I think that this is required.

Who wants a blind doctor? Anyone?
A deaf doctor?
Even a cheelchair bound one. (Getting to a cardiac arrest would be "interesting").

Those that are so for these practicing, think that they're doing so on your loved ones. They are doing a full job, and yes,they'll miss things. Are you OK with that?

Conditions like ADHD are partly due to children are increasingly spoilt. The rich had a no-nonsense nanny, and the poor were quickly in work and had to be have ASAP. Now children are in full time education until 18 and discipline is almost non existent.

[Hosakawa Tito]

Terminating a pregnancy for such severe, life altering medical conditions that have been mentioned should be totally up to the parents. I judge them not, no matter what they decide. If I were in that position, my greatest worry would be who will care for my child after I'm gone? Will my child be loved, happy and well cared for?

[Rameusb5]

As for the deaf issue: It seems to me that the people who are against these implants because their "Culture will no longer exist" are being extraordinarily selfish. So the fact that the children can benefit from having an entirely new sense isn't equal to the fact that you can all share your experiences of not being able to hear anything?

As for the downs syndrome kids being aborted, this is definately a slippery slope. At face value, it seems fair to say that they will probably have a difficult life and therefor would be better off not being born. But where do you draw the line? Should a couple who REALLY wants to have a girl be allowed to kill a male fetus? It sounds incredibly shallow but as far as I know it is perfectly legal to do that now. It will soon be possible to tell a LOT about what the child will look like before he's born, such as eye color and so forth. What's to stop couples from getting pregnant over and over again and aborting until they get their "perfect" child?

[GoreBag]

That a deaf person can't handle the prospect of someone else not being deaf is hilarious. If my child were deaf, I would try these implants, provided there was no associated health risk that potentially outweighed the benefit. I don't know anything about them, you see.

[Slyspy]

The "deaf community", which I doubt is unified on the subject, I disagree with their objections . If deafness caused by simple mechanical problems can be fixed at a young age then it should be done ASAP. As someone said earlier, the medical process is appled for the benefit of the child, not an outside interest group.

The abortion of an unborn with Downs is a difficult one. I suspect I would want the termination to go ahead, if the mother definitely wanted to abort. If not, I would not attempt to perseude of coerce her into a change of heart, rather I would do what I could for the child. Either outcome could, I'm not ashamed to admit, break me.

[Del Arroyo]

Frankly I don't think I would ever consent to a pre-natal screening, but if one happened to pop out retarded, I'm not sure what I'd do. The mere thought of being forced to love and cherish a disfunctional, deficient child who will never be able to learn what I have learned or live an independent life, is rather disturbing.

But, as I don't really like the idea of pre-natal screenings, I suppose I will accept with open arms whatever the good Lord gives me. Worse things have happened to better people.