Disability, children and the family

For Down's no, certainly. I really can't see what justification there is for aborting a child because it has Down's. A given woman may not want to look after it, ok, may not even like or want carry it. I'm not disputing that women should have that control immediately, but I stronlgly disagree that Down's slips into this category of knowledge application that is wanted or not opposed, but we can qualms about autism. Why should a Down's child be aborted any more or less than another child. I'm not saying the experience is the same. I know for sure that there are parents who love their Down's children more than their other children, and I've loved and worked with Down's people too. For me I find some aspects of life with Down's tragic, that is my framing, I also find lots of aspects of life, like death tragic too, and it's true I tend to oppose medical attempt to resist death. But this can't be taken out of context from my general perspective on the Medical Establishment and its power over the working-class, especially women.

I don't know, but presumably tests are done for different conditions. I haven't said I oppose testing for all things. I oppose testing for Down's. That said, I can't think of an example where "I support" an abortion on teh grounds of any disability, notwithstanding all the points made about our individual predicaments.

Lots of feminists across the world oppose the provision of testing for sex, not because women can't be trusted with knowledge, but because of the pressure all around to abort female foetuses, and the fact that the very testing on this basis is underpinned by sexism.

It's not the same thing as Down's but I'd oppose the provision of the test for those same reasons; the testing for Down's is disablist, and we have to explain that we not for women being burdened with any child that they do not want to or cannot look after.

Leaving aside parents who may or may not want their children dead, or regret their birth, I've not met a Down's carer that has expressed that Down's people must necessarily lead unhappy lives, still less have seen fit to pronounce on their fitness for life.

There are general and fairly absolute arguments to be made about a woman's right to choose and know, but that shouldn't be conflated with an argument which is essentially about society's views about disabilities.

Am I really missing something?

we always get bogged down in this red herring debate about compulsion. It's tedious. Leave it aside Janine: I've said several times I support a woman's right to choose in general.

But no I do not "like the idea" of people testing for Down's with a view to aborting. Yes it is a disablist act. Again, I would rather there was social infrastructure for people with Down's not that they be aborted. I think that's clear enough.

In general, our positions are for freedom of knowledge etc, but it is also not on to fade out the context in which these tests happen.

And your last point, not even worth responding to.

Robin said: "I oppose testing for Down's. That said, I can't think of an example where "I support" an abortion on the grounds of any disability, notwithstanding all the points made about our individual predicaments."

This, I think, is the crux of the matter. Supporting a woman's right to choose doesn't have to involve us "supporting" abortion on any grounds, but rather supporting the woman concerned to be able to make a clear and informed choice of her own. How can she do that, if we give her the right to choose an abortion but deny her the available diagnostic tools to make a judgment on the things that are important to her?

I definitely want to live in a world where I could feel confident that every child born could expect to receive all the care, resources and love they need irrespective of any disability they may have or the ability or otherwise of their birth parents to give that care themselves. But we all know that the world we live in now is not like that. So individual decisions about whether or not to test and then whether or not to abort based on the outcome of the test have to be left to the mother. Otherwise we might be mouthing the words "right to choose", but we are not really following through on the consequences of them.

If we are against diagnostic tests then we have to be, logically, against all pre-natal scanning – which after all is a form of diagnostic test, allowing medical professionals, and women/parents to assess whether or not a foetus is healthy and developing as it should be. Scans can pick up all kinds of abnormalities which may or may not be life-threatening for the foetus.

Plus there is a partial test now at the 13 week scan to see if a foetus has a high probability of having Downs Syndrome. What should we say about that?

So you have to think very carefully before you go down this route: maybe you are in favour of denying women all kinds of information which is available to them as the result of medical technology. Do you really want women to go through a pregnancy in complete ignorance of what is happening to them? To go back to a situation where they have to leave it to “fate” what the outcome of their pregnancy. That seems to me to be very regressive and I don't think any of us want that.

This may be shocking to some but I would not feel uneasy at all if a woman decided to abort a pregnancy at 13 weeks if her scan showed an abnormality which made it more likely she was carrying a foetus with e.g. Downs Syndrome i.e she had a termination for that reason alone. A 13 week foetus is a 13 week foetus – a human at a very early stage of development, not a fully developed human at all. We are not here talking about disrespecting the life and opportunities of fully developed human beings with Downs Syndrome. But of course no woman has to justify the decision to terminate her pregnancy to me, or to anyone else.

I was offered the full screening test for Downs Syndrome (after c. 16 weeks) when I was pregnant with my daughter as I was 35 at the time. I refused it on the grounds that I wanted to be pregnant and was only going to contemplate one pregnancy going to term in my life and that I would live with whatever the outcome was. Every woman faces a unique situation, and not every woman takes up these tests (if offered a choice), although many do. We should not assume at all that women are going to opt for termination, particularly as by the time you get to the point of deciding to have the test or actually do have the test; you’ve had a quite a long time living with a “wanted pregnancy” – that’s an important factor I’m sure for very many women.

Yes, a lot of children are neglected and abused and yes, I too despair at the “selfishness” that seems to be enhanced rather than repressed (as it should be) in some people when they become parents. However, that should not jaundice our view. The vast majority of people actually start out wanting to be good parents and do their absolute best for their children no matter what life throws at them.

If we actually agree with a woman’s right to chose then we have to give women advance credit for making a good choice no matter how difficult the circumstances might be – they will make a choice that is right for themselves (and their other children etc) in the first instance. Why assume as that part of the complex choice that they have to make - that we should believe they are capable of making - there is absolutely no willingness to do their best for a potentially disabled child, and that a disabled child will also be a very much wanted child.

Robin, I don't have qualms about autism screening. What I wrote on my blog was:
"I worry about how these new findings may be used by some to whip up momentum to 'eliminate' autism. But I can not regret the advance in understanding that has apparently been made. "

... and additionally in the comments, "I don't think we should ban the test, partly because ... it would obstruct women's right to make an informed choice.

I think we should do two things:

1. Challenge the idea that women necessarily *should* abort an autistic foetus.

2. Campaign for rights for children and adults on the autistic spectrum, and for the social changes necessary to provide support for autistic people and to enable society to recognise and benefit from their contribution."

However, I do think there is another issue with autism. It is not - especially at the 'higher-functioning' end of the autistic specturm - straightforwardly a disability. It is a neurological difference that has positives as well as negatives. So it should not be discussed as though it is the same as other conditions that are disabilities.

As a long time reader of the AWL site and socialist disability rights activist, I am struck by the lack of expert knowledge of disability rights and the lack of disabled voices. Janine's exclamation points just illustrate her lack of knowledge. Michael Oliver is British and his The Politics of Disablement is a classic in the field yet how many socialists have read him? Yes, I am pro-choice. But there seems to be a total lack of engagement with disability rights theory. In fact, the original piece bizarrely just assumed blindness was a bad thing. In fact, many blind advocates actually see the problem as discrimination and would place blindness in *exactly* the same category as autism. They are busy complaining about how left wing web sites don't conform with the best access standards (and left wing organizations are notorious for being terrible on disability accommodation btw; how many AWL meetings are wheelchair accessible?), not waiting for genetic tests so future children won't be blind. This is Janine's bias. Same thing with many with spina bifida and yes Down's. The women's movement needs to appreciate that this is as personal for people with disabilities as it is re a woman's right to choose. I don't see how one can be for disability rights and make distinctions on bans on aborting female fetuses and disabled fetuses. Either one is pro-choice in *all* circumstances or not. I don't see the harm on banning genetic tests either, which I think is quite different from abortion where women have died from not having access to safe abortions. Having confidence in women to make choices is rather unrealistic in a world where women are pressured to have abortions in the case of disability. In the US, where the disability rights movement is stronger than anywhere else in the world, you now have explicit alliances with the Christian Right because at least in part of insensitivity of the left on these issues. Solidarity can only be built when disability rights scholarship is read by the left. Virtually no far left organizations (the obscure Freedom Socialist Party-US is an exception) have put out disability pamphlets.