AUTHOR: Redaspie DATE: Monday, June 12, 2006 ----- BODY:
The question of the correct response to the question of eugenics, pre-natal testing, and abortion is one that I've been struggling with in my head for a while. This is a hot potato in the autistic community, with the prevailing view being blanket opposition to any notion of a pre-natal test, along with a clearly detectable anti-abortion undercurrent. As a fervent pro-choicer this is a difficult circle to square. It is undoubtedly true that the vast majority of fetuses with Down's Syndrome that are detected in pre-natal testing are aborted, although in Britain at least a significant minority remain undetected, suggesting some parents are simply refusing to take the test. It is very likely that a similar test for autism will result in large numbers of abortions taking place, although I personally think that the apocalyptic rhetoric coming from some in the movement is misplaced. Nonetheless there is an issue of discrimination if the majority of fetuses detected as having a particular characteristic are being aborted. From a pro-choice viewpoint, calls for a ban on abortion, even if only in certain circumstances, has to be ruled out. But again also calling for a straightforward ban on prenatal testing is also problematic, as women have a right to all the information that can be gleaned about the baby before going ahead with the birth. Some women may find themselves in a position of facing the additional challenges that can come with having a disabled child, and be unable to meet those challenges.

The obvious answer that came to mind is to argue that the dangers of mass abortion of autistic fetuses is simply part of a wider web of discrimination against autistics in society, and if we fought against and changed this, then the attitudes that led to abortion en masse would just cease to exist. However, this seems unsatisfactory in that it relegates the issue to the background, failing to allow any context that would allow the issue to be raised as an issue in itself unless one wanted to join the 'pro-life' bandwagon.

However, Aspies For Freedom co-founder Amy Nelson has, in very perceptive comments concerning one particular parent struggling with the demands of a very young autistic child with, among other things, no sense of danger, succeeded in coming up with an excellent approach:

"When parents need help, there are medications that they can't afford, schools
that are too far away, and they cannot even get a fence just to keep their child
safe, why is so much money being pumped into research, and even more planned? It
seems that there is tremendous focus on prevention via prenatal test, and
research towards perfecting that, rather than helping the children, parents, and
adults with inexpensive healthcare, and practical needs like safety issues."


And this goes straight to the nub of the question. The establishment view of autism is a medicalised one, leading to the emphasis into research into causes and treatments. The correct response is an educational/ social/ political view that centres on finding ways to include autistics in society both by giving them the knowledge and skills needed to succeed in an overwhelmingly non-autistic society, and by reforming society to allow them (or us I should say) to be accommodated. The expenditure on autism should be going on supporting families, educating children, and changing places of employment to make them more hospitable for autistics, *not* on genetic medical research, of which the prenatal testing is only a part.
-------- COMMENT-AUTHOR:Blogger stroppybird COMMENT-DATE:11:03 PM COMMENT-BODY:This is linked to the social model of disability.

I believe women should have the ultimate choice but with full information and advice on autism/AS. Generally the public is ignorant of autism and aspergers and the 'disability' a lot of the time is a result of attitudes and the pressure to fit in with societies norms.
Of course education and awareness is only one aspect, as you highlight in your post. Support is needed for parents .
When both those are in place women can make informed choices. -------- COMMENT-AUTHOR:Blogger stroppybird COMMENT-DATE:11:23 PM COMMENT-BODY:Society likes conformity and social rules. Aspies look at the world differently. Difference is feared and misunderstood. Conformity and playing the game and knowing the social rules is rewarded, those thay do not fit in are not . This also includes LGBT people, those that do not want to live by societies conventions, people with mental health problems and of course aspies.
The whole disability rights movement challenges this. -------- COMMENT-AUTHOR:Blogger Redaspie COMMENT-DATE:10:58 AM COMMENT-BODY:Welcome to my blog, stroppy!

What you wrote just about sums up the size of it I think. I am a little sceptical about the social model of disability as it appears, from what I've heard of it, to imply a rigid distinction between 'disability' as a social construct, and 'impairment' which is the objectively existing lack of ability that a person has. This runs the risk of creating a new oppressive category of 'impairment' that leads straight back to marginalising of disabled people. It seems to maintain the idea of a 'norm' against which to judge everyone. -------- COMMENT-AUTHOR:Blogger stroppybird COMMENT-DATE:12:47 PM COMMENT-BODY:Hi red aspie

The social model has its probelms, its just better than the medical model as a framework. I would also question whether aspergers and high functioning autism is a 'disability'. Its about difference. I'll give a bit more though about this and comment more later. I'll try not to make it an essay ! I think there are real issues for the left and 'difference' I did a post on that on my blog and also one on MMR and autism. Fairly basic stuff , not the more radical rights stuff. Just felt that the debate about MMR could have been an opportunity to educate and raise awareness on aspies.

Hope you don't mind further debate on this, its an area that I feel strongly about.

Pop over to stroppyblog anytime, i'm trying to cover issues from a different perspective, or things that don't traditionally get covered in leftie or feminist blogs. Yours looks good as well, not the usual left blog. I suspect a bit challenging for many of the left. -------- COMMENT-AUTHOR:Blogger stroppybird COMMENT-DATE:12:50 PM COMMENT-BODY:Oh I kept the aspie/autism awareness fairly basic as I was trying to introduce the concepts in the MMR post. Personally I have more time for the radical perspectives, but its pitching it at the audience. Will probably post something else on the blog. -------- COMMENT-AUTHOR:Blogger Redaspie COMMENT-DATE:2:36 PM COMMENT-BODY:I would challenge the existence of a meaningful distinction between high functioning and low functioning to be honest. Amanda Baggs has a lot to say about this. Her blog is Ballastexistenz by the way which I link to on my site.

I don't know how challenging the autism rights movement would be to the left really. My fave blog is Lenin's Tomb (another of my links) and he posted recently about human nature and included a sidebar about how supposedly abnormal behavior is medicalised in capitalist society. He is an SWP member like me. So I would suspect that many revolutionary socialists would be instinctively on side wit the kinds of views I'm arguing.

And no of course I don't mind debate! -------- COMMENT-AUTHOR:Blogger stroppybird COMMENT-DATE:2:51 PM COMMENT-BODY:I am perhaps less optomistic about the left. Of course this is generalising but they are not always very good on the whole idea of difference. I mean that wider than just 'disability'. I include sexuality (LGBT), the norms of society and what is expected. Many are quite conservative with a small c. I would like a society where there isn't an expectation to live or be a certain way. Many are not that great on mental health issues or the whole area of learning difficulties (still having a paternalistic protective attitude). Im rambling a bit here but its about being allowed to be different , not just accepted but not judged agaigst a norm.

So with a physical 'disability' society would be adapted so the difficulties and barriers were minimised.

Mental health is an interesting idea. I do believe there are real mental illnesses which do cause great distress of themselve as well as the distress caused by societies handling of them.

In terms of aspergers/autism I favour the idea of neurodiversity. it is all a spectrum anyway, with few people at either end. I suppose when I talk about high functioning I am aware that for some people with autism it is more dstressing for them to interact and communicate with the world. By HFA and aspergers (and the difference between these two is small) it is much more to do with having to fit in with society that causes unhappiness to the person. An example would be being confused by what is expected and not responding in the expected mannre. This causes problems in that the NT person may not understand and perceive it as rude or uncaring, when that is not what was meant. The onus is on the aspie to 'fit in' or change rather than society to be more aware and accept differences.

Given that I struggle to get the left to listen re women and LGBT then I am not hopeful that they grasp and welcome a real challnge to what is the norm, not just in society in general but on the left. I have probably explained this better on my post on this.

The emphaisis is on the economic and not on the social/personal . Its not juts what we say but how we live our lives and how we respond to others.

btw have you seen the site that does a spoof DSM category on NTs. -------- COMMENT-AUTHOR:Blogger stroppybird COMMENT-DATE:2:53 PM COMMENT-BODY:Excuse the spelling, typing quickly and not accurately. -------- COMMENT-AUTHOR:Blogger Redaspie COMMENT-DATE:8:36 PM COMMENT-BODY:I'm surprised that you have a view of the left as not being good on the issues you describe. Mind you I suspect it depends on what part of the left. The Socialist Campaign people have, so I'm told, fairly conservative views on these kinds of issues. Possibly the same with orthodox Trot groups like the Socialist Party. I've been in the SWP in Ireland for around three and a half years now and they're *certainly* strong on women's and LGBT issues. I and the rest of my branch go to Gay Pride in Belfast without fail. On disability rights they are probably weaker; I suspect that the problem is that it simply hasn't crossed their radar in the way it should have. However, in Britain we do have Pat Stack who appears to be pretty good. -------- COMMENT-AUTHOR:Blogger stroppybird COMMENT-DATE:9:18 PM COMMENT-BODY:I'm not picking out particular groups, I suppose I naively expect better of the left in general.

I find there is still a lot of conformity . I don't think I have come across many who would be aware of issues such as neurodiversity and aspie rights for example.

I suppose what I am talking about is really challenging the what is 'normal' and about fitting in. Of course there are some people who are good on these issues or at least willing to listen .

I really do not want to be negative. I would hope a socialist world would encorage difference and challenge expectations. I don't know what the SWP in Ireland is like but I can't say I am impressed by Respect/SWP here. I do not though want to get into sectarianism. Its disappointment on my part, not point scoring.

If your experience is different then thats good. -------- COMMENT-AUTHOR:Blogger Redaspie COMMENT-DATE:9:34 AM COMMENT-BODY:Well I imagine the reason why the left aren't aware of things like neurodiversity is that it's a pretty new thing and also at present remains very much a fringe thing, mostly composed of small groups and various blogs. There are the Autreat/ Autscape conferences but they are mutual support things rather than political events. No-one is actually mounting any real campaign. I also suspect some on the left see such ideas as suspiciously 'postmodern', and indeed the academic who coined the term 'neurodiversity' described it as postmodern herself so that kind of reaction is understandable. Plus there's also a rather large bunch of people within the autism rights movement with *really* strange ideas, such as those who argue that autistics are descendants of Neanderthals. That kind of thing would probably put a lot of otherwise sympathetic people right off. -------- COMMENT-AUTHOR:Blogger stroppybird COMMENT-DATE:11:01 AM COMMENT-BODY:I gave neurodiversity as an example, probably not a good one. I think it is more to do with the mindset of the left to look at things differently and to question .

I just want people to think about why some things are done as they are, or why there are certain expectations in society and the pressure to fit in. That can be around LGBT issues, women , ageism, 'disability' ....
Its about questioning convention .

Anyway it seems we have different experiences of the left . If yours are more positive then thats good. I'll just keep ranting on my blog :-) -------- COMMENT-AUTHOR:Blogger Redaspie COMMENT-DATE:4:47 PM COMMENT-BODY:And I might even visit it sometimes

;-) -------- COMMENT-AUTHOR:Blogger stroppybird COMMENT-DATE:5:25 PM COMMENT-BODY:Be good to see you there. I'll visit here as well . -------- COMMENT-AUTHOR:Blogger abfh COMMENT-DATE:3:06 PM COMMENT-BODY:Redaspie wrote:

I am a little sceptical about the social model of disability as it appears, from what I've heard of it, to imply a rigid distinction between 'disability' as a social construct, and 'impairment' which is the objectively existing lack of ability that a person has. This runs the risk of creating a new oppressive category of 'impairment'

You nailed what's been bothering me about disability activists' use of the word 'impairment.' When I wrote a post for Blogging Against Disablism Day, it ended up being categorized as an impairment-specific post. That language struck me as all wrong because autism, although it can be an impairment in some contexts, is a neutral attribute or an advantage in other environments.

Impairment is just as much of a social construct as disability. There are no objective criteria for determining whether a particular trait or condition is an impairment or just a difference. It all depends on society's attitudes. -------- COMMENT-AUTHOR:Blogger Redaspie COMMENT-DATE:7:16 PM COMMENT-BODY:"Impairment is just as much of a social construct as disability. There are no objective criteria for determining whether a particular trait or condition is an impairment or just a difference. It all depends on society's attitudes."

Nng, that sounds like going too far to me - I'm really not a fan of the postmodernist tendency to claim that everything is just an 'interpretation' or a 'discourse'. I happen to believe in the existence of a material world amenable to analysis. And I think it is perfectly possible to objectively define an impairment - if someone can't see, or can't hear, or can't walk, then relative to the vast majority of the population then they have an impairment. The problem is that the social model applies this in a rigid fashion, and autism is precisely one area in which that doesn't work, as autism is not just a set of impairments. -------- COMMENT-AUTHOR:Blogger abfh COMMENT-DATE:11:37 PM COMMENT-BODY:Redaspie wrote:

it is perfectly possible to objectively define an impairment - if someone can't see, or can't hear, or can't walk, then relative to the vast majority of the population then they have an impairment.

That definition has way too many undefined variables to be objective. If it were a computer program, it would go kablooey when you tried to compile it.

Everyone has some things that they can't do relative to the vast majority of the population, but not all of these things are impairments, and many of them are considered to be impairments for some people but not others. Whether a particular lack of ability is an impairment depends on such factors as cultural expectations, social class, etc.

Let's suppose that a man, because of his neurological wiring, has major difficulty with cooking, cleaning, doing his laundry, and other everyday household chores. If he has an autism diagnosis, he is at risk of being sent to an institution because of his lack of self-care skills. If, on the other hand, he is married and his wife does all the housework, he doesn't have to worry about anything except his wife's nagging. If he was born rich and has servants to do all of the household work, society won't even expect him to know how to cook or clean.

Ballastexistenz has a new post that discusses why "objective" language really isn't. -------- COMMENT-AUTHOR:Blogger Redaspie COMMENT-DATE:8:38 PM COMMENT-BODY:I've read that post - it's actually talking about a particular word and its use.

I really have a very hard time with that hoary old idea that the reason men don't do the cooking is because of their 'neurological wiring'. If that's the case then please explain why most chefs are *men*. And I just don't think *any* standard-issue NT man has any real 'difficulty' mopping the floor, washing up, or sticking clothes in a washer - although some may pretend to.

There really is a big difference between something like not being able to cook or play or musical instrument, and not be able to see. For a start the former are learned skills, the latter cannot be learned - either you have sight or you don't, but you can't learn it in class. Secondly, not being able to see, walk, look after yourself, has major effects on day to day living that don't occur through not being able to cook, or play an instrument, or play sport. Effects that require additional support of one kind of another, such as with a blind friend of mine who has a white stick and a guide dog, and also sometimes needs someone to guide him from A to B inside a building. If you lack a quite fundamental ability such as sight, then the term 'impairment' does make perfect sense and does describe something qualitively different from not having a certain relatively specialist skill such as musical ability.

The problem as I say is that the social model rigidly imposes this distinction between impairment and disability in *all* cases where there are many 'disabilities' which cannot simply be reduced to a specific impairment (autism being one). -------- COMMENT-AUTHOR:Blogger abfh COMMENT-DATE:9:06 PM COMMENT-BODY:I wasn't arguing that men in general can't do housework (which I don't believe), but that an individual's lack of ability easily can be overlooked, excused, or even expected, depending on his or her position in society. There are also many stereotypes about women lacking certain abilities, and those who believe the stereotypes do not consider such women to be disabled.

There really are people who can't cook because of their neurology; Amanda Baggs has written that she can't cook because she thinks spatially, rather than sequentially, and therefore can't keep track of the steps involved in cooking. Because of this, her staff person prepares her meals. In her case, being unable to cook is a genuine disability, and she might easily end up malnourished without such assistance. A person in different social circumstances might be equally unable to cook, but it wouldn't be considered a disability.

I understand and agree with your point that autism is a complex condition that can't be reduced to a specific impairment. I'm just pointing out that reducing anything to an objective impairment is a lot more difficult than it looks. -------- COMMENT-AUTHOR:Blogger Redaspie COMMENT-DATE:10:18 PM COMMENT-BODY:Depends on the impairment I would have thought - under what conditions might being blind not be an impairment? And if Amanda Baggs can't cook because she can't think sequentially, then that might mean that she is *unable* to learn, which is a very different thing from just not being able to cook because you haven't yet learned to. -------- COMMENT-AUTHOR:Blogger abfh COMMENT-DATE:3:18 PM COMMENT-BODY:under what conditions might being blind not be an impairment?

Under any conditions where blindness was routinely accepted and accommodated as a normal way of being, to the extent that a blind person's life did not differ appreciably from a sighted person's life. For example, some medieval monasteries and convents took in blind children, along with orphans and other unwanted children, and raised them in a simple and regimented life of daily prayers and chores, where sight or its lack was unimportant.

And yes, I was referring to inability to learn to cook. My point was that an inability to learn a particular skill wouldn't be an impairment for a person who, for social and cultural reasons, was not expected to learn that skill. Yes, there's a difference between a person who cannot learn a particular skill and a person who could learn it but hasn't. If the skill happens to be one that the person is not expected to learn, however, then the difference goes unnoticed. -------- COMMENT-AUTHOR:Blogger Redaspie COMMENT-DATE:5:16 PM COMMENT-BODY:I really think you're making a confusion between impairment and disability here. Impairment, in the social model, simply refers to a lack of a certain ability, such as sight. What you seem to be talking about, when you discuss situations where being blind for instance might not be seen as socially important, is a situation where an impairment has ceased to be disabling.

What I was referring to at the start of all this is that the theory assumes the existence of an 'impairment' in all cases where with many disabilities, such as autism, there is much more going on. -------- COMMENT-AUTHOR:Blogger abfh COMMENT-DATE:10:23 PM COMMENT-BODY:I know how the word "impairment" is used, Redaspie, and I don't view it as an objective term. Describing a lack of ability as an impairment necessarily implies the existence of a "normal" level of ability against which an impairment is measured. Therefore, like the concept of disability, it always involves a subjective value judgment on what is "normal."

I completely agree with your point that there is much more going on with autism. -------- COMMENT-AUTHOR:Blogger Redaspie COMMENT-DATE:7:17 PM COMMENT-BODY:Nevertheless, I think what you were describing earlier on was what social modellers would describe as disability - the social effects - and not the impairment.
And as for 'normality', well yes that is an oppressive concept. However it is still rooted in actual reality to the extent that the majority of people can see, hear, walk, do not have a learning disability etc. Hence those who are blind, deaf, autistic etc. are a departure from 'the norm', in other words the majority. I don't think accepting this inevitably entails any discrimination. It's when not being part of the majority is imbued with negativity that problems arrive - like gay people used to suffer and still do in parts of the world. --------