AUTHOR: Redaspie DATE: Sunday, May 28, 2006 ----- BODY:

Since autism rights and neurodiversity are one of the main themes of this blog, I thought I'd start my blogging proper by outlining some of the ideas I've had concerning the central issue at stake here. This is, as anyone at all familiar with this area, the debate over whether autism is a disease or disorder that should be remediated, treated or even cured, and the view that is held by autism rights activists (and that I hold) which is that it should be seen as part of human diversity and respected as such. The central concept behind the autism rights movement is that of 'neurodiversity' - a concept that at its most simplest can be defined as the view that as there are different sexualities for instance, there are different neurologies, and that there are 'neurological minorities' who are currently labelled 'disordered' by discriminatory attitudes within society. An article that explores the concept in a bit more depth from an educationalist point-of-view can be found here. You do need to rummage through a bit of irrelevant, if interesting in its own right, stuff to get to the relevant bits.

Of course, even if one argues the latter point of view, it doesn't follow that autism is not a disability, although I think that to label it as such is too simplistic, ignoring both the advantages that some people have undoubtedly gained from aspects of their autism, and also the simple fact that a substantially high number actually enjoy being autistic, feeling that it gives them a whole set of experiences that they find genuinely fulfulling. Whether or not autism should be seen as a 'disability' is a question fraught with all kinds of difficulties, particularly when you start dragging in the 'social model of disability'. For the unitiated, this takes the view that certain have physical or mental 'impairments', such as being blind or deaf, which only become a 'disability' when placed in the context of a society that discriminates against and marginalises people with impairments. Applied straight, this model would say that autism is a set of impairments (the 'triad of impairments' in social communication, understanding, and imagination). However, apart from the above facts concerning the advantages and positive experiences that some autistics have, there have been a number of challenges to conventional views of autism as a set of impairments. For instance, many autistics have questioned the idea that autistic people lack imagination, and indeed there seem to be a large number of very creative autistic people out there. Here's one example.

Rather than delve too deeply into this particular issue, I want instead to look at the more practical issue of what are the sources of the discrimination facing autistic people in society. The most common view expressed about this locates the problem in the attitudes, assumptions and actions of non-autistic people who, through ignorance, narrow attitudes and unwarrented assumptions, regard autistic people with pity, condescension or even at times hostility. Arguments of this general type are to be found in countless blogs and websites in the movement (much of which is online), and this approach colours much of the commentary on issues facing autistic people. For instance, the acts of abusive parents or parents, including in a few extreme cases, where an autistic child and sometimes adult has been murdered by their carers, are discussed in terms of the blame being primarily or sometimes entirely with the individual who commited the act - and discussions in the media concerning the lack of support recieved by carers of autistics is dismissed, and concerns of this type downplayed. I have read comments in response to discussions of the desperation on the part of some parents which effectively say that "parenting just is tough. Deal with it!" Groups such as Autism Speaks, which campaigns in both the US and Britain into research into treatments for autism and who are one of the leading purveyors of the "autism = disaster/ tragedy" view, are attacked and the parents and other individuals involved in such campaigns condemned as bigots peddling hate speech. The question as to why individuals and groups hold these attitudes, and commit such actions is not addressed.

Now I should point out before going any further that I don't disagree as such with any of the above. There is certainly no way that such actions as those of Katharine McCarron, the Illinois doctor who suffocated her 3-year old autistic daughter can be excused or justified, nor can the parents who locked their autistic son in a cage because they 'couldn't cope'. It is equally the case that Autism Speaks and their ilk are appalling organisations, who peddle an archiac medicalised view of autism that would be seen as deeply objectionable if used in the context of blind, or deaf people. However, this is by no means the whole story, and the main problem with this view is that it decontextualises the actions and attitudes of individuals and groups. The dangers of such a view can be seen when one considers this quote from Rae E. Unzicker, an American psychiatric disability rights activist:

"You wonder how a system so sophisticated, so technologically advanced, can
treat people with such cruelty. Of course, it is not the system at all. It is
one doctor, two nurses, an aide, or an orderly. It is people who lock people into seclusion rooms, and it is people who affix the leather cuffs or the chains or the gauze strips. It is people who do this and who do not have the courage to confront the unimaginable. It is people who believe they must do what they must do and that what they must do is the expedient thing. It is people who justify torture. "We're only trying to help. We don't know what else to do," they say, with their refrigerated voices."

The problem with this view should be obvious. It's like arguing that the ideology of the Nazi regime, the oppressive nature of that regime, the aims and policies of Hitler and his government, the Nazi 'system' in other words, had nothing to do with the slaughter of Jews in the gas chambers, and that the blame should instead should be placed on the people who were directly involved in herding the concentration camp inmates into the chambers. This illustrates the individualistic and moralistic nature of this perspective. As the above quote makes clear, the onus is seen as being on the individual to change their attitudes, to open their mind to the perspectives of the autistic person, to "have the courage to confront" their own attitudes and what their actions result in.

It also results in many in the movement adopting a siege mentality - a view of autistics being surrounded on all sides by a deeply hostile world peopled by bigoted individuals wanting to keep autistic people out of sight and out of the social fabric because of the 'unacceptable' nature of their autistic personalities and behaviours. This is most apparent in the reactions to recent progress in research for a pre-natal test for autism, which revolved around an assumption that a pre-natal test would be used to ensure all fetuses with the autism 'gene' (or whatever neurological difference) would be aborted, and the belief that autistic people are on the verge of being made extinct - talk of 'genocide' is bandied out, and comparisons are made with Nazi Germany.

Another view, not entirely unrelated to the above, but more ideologically coherent and more closely argued, is the idea that the movement, and the concept of neurodiversity is a 'post-modernist' one. In fact, the person who is widely credited with coining the term, Australian academic Judy Singer, herself describes the idea in these terms:

"The rise of neurodiversity takes postmodern fragmentation one step further.
Just as the postmodern era sees every once too solid belief melt into air, even
our most taken-for granted assumptions: that we all more or less see, feel,
touch, hear, smell, and sort information, in more or less the same way, (unless
visibly disabled) are being dissolved."

It is my contention that, despite the fact that she coined the term, Singer is wrong to argue that the ideas behind neurodiversity are post-modernist. They are no more so in fact than the gay rights lobby or the women's liberation movement. Larry Arnold, one of Britain's leading neurodiversity campaigners, put forward a postmodernist description of what he saw as the challenges of the neurodiversity movement, and what its aims should be. His central argument is that the 'culture' of the autistic community needs to be asserted in contradistinction to the conventional academic 'discourse' on autism, or the autism = tragedy perspective of some parents. Here, the problem is that the dominant 'discourse' or 'story' concerning autism is the negative one, and the positive 'story' held by the neurodiversity movement is marginalised. Like the individualistic view expressed by Unzicker, the immediate source of the problem - the negative discourse in this case, is divorced from context. Postmodernists, of course, at least have an answer to this question - there is no 'context', there is only the text!

This is deeply unsatisfactory. As with all postmodernist ideas, we are invited to believe that there is no consensus reality, and that there exist only various stories, interpretations and discourses. Those interested in analysing the nature of discrimination against autistics, or any other group, can do nothing more than describe the various 'discourses'.

I believe that a very different approach is needed, one that begins with the premise that the discrimination and oppression that autistics, and indeed all other oppressed groups face, are due to the material conditions operating in society. This could be described as a Marxist standpoint, although the word 'Marxist' has been much abused over the years. Even during Marx's day there were sycophants and dogmatists calling themselves 'Marxists' who hung on every word of Karl Marx, so much so that he famously stated that he himself was not a Marxist! Nonetheless, it was Marx who more than anyone else was responsible for developing the kind of analysis of political issues that I am about to outline.

To a Marxist or Marx-inspired observer, capitalism works on the principle of a division of people in society into a minority who own the means of production - the shops, the factories, the call centres (like the one where I work), who make a profit out of them, and are the ruling class of people in society; and the majority who must work in these places of production for a wage. This means that everyone in society has in effect an assigned role from birth - either they are going to be a 'capitalist', owning a company or shop, and hiring others to work for him/her, or they are going to be a worker, and take a job working for one of the capitalists who own the means of produciton. Either way, each individual is expected to find some kind of employment, one which is in some way profitable either for themselves or their employers, or for capitalist society generally. However, individuals have another role as well - which is to reproduce, that is to produce the next generation of workers and capitalists, and this is the role of the family under capitalism. The modern nuclear family is one of the most important structures to the capitalist class, as it allows responsibility for the rearing of children to be largely left to the responsibility of the parents themselves, who are expected to instil the 'correct' values in their children and prepare them for what will be in the majority of cases a lifetime of, on the one hand, profitable work and on the other, bringing into the world and rearing their own children to do exactly as they themselves have done.

( Of course all this is an oversimplification, and indeed these days the responsibility for bringing up children does not rest entirely with the parents - there are the free public schools, social welfare providing support to families of one sort or another (in Britain it is primarily in the form of tax credits), and no doubt other things that I've forgotten about. Note, however, that all these developments came about largely through the campaigning activities of movements, groups and individuals from among the mass of ordinary people pushing for change in the system, and therefore are concessions by the ruling class to the mass of people that in a sense contradict the interests of the ruling elites.)

The question that arises then is this: what if children are brought into the world who from birth cannot be brought up to be wage-earning producers and future parents in the way I've described, or at least not without a lot of extra support of help? In other words, what if some of the children are 'disabled'? Historically, people who were blind, deaf, could not walk, or had what we today call 'learning difficulties' and in previous times was called 'retardation' have been marginalised in capitalist society. It is hard not to see how this is in the interests of the capitalist elites - such people need extra help in the education system, whether its just to physically get about in school, because they can't see the schoolbooks to read them, or because they actually have difficulty understanding things. In employment, they will need extra support to do the work they are employed to do. And they will also in many cases encounter challenges in bringing up children. For autistics, who frequently experience communication and understanding issues, as well as hypersensitivity to sensory stimuli, the world is a difficult one to navigate. This means that disabled people (and therefore autistic people, and I'll concentrate on autistics from now on rather than disabled people in general) are expensive. In school, in work and in life generally, they will need in many cases all kinds of help in dealing with the world. The expense needed to maintain these networks of support cuts into the profitability of the capitalist system - at work for instance the employer is obliged to accomodate special needs of autistic employees, and this must come either out of the company's budget or out of public taxation, which is money taken out of the system and which therefore cannot be used for the buying and selling of goods and services which the system depends on.

It is no surprise then that autistics have been throughout history largely shut out of the system, with the exception of a minority who are either very 'high-functioning' or have certain specific talents or abilities that allow them to succeed. Before autism was discovered in the 1930s, most autistics would have been lumped in with the others labelled as 'retards', and since autism was discovered, the story has been the same. Until relatively recently, autistics as a rule would have faced institutionalisation, a method of 'storing' autistics where they could be 'cared for' at minimal expense to the capitalist system, or were simply left under the care of their families who were expected to just get on with it with little or no support from the public purse. Even today, although there has been some improvement, largely due to campaigning and protesting from disabled people themselves, systematic marginalisation and in some cases institutionalisation remains the reality for most autistics. Instead of giving autistic kids the education they deserve, for instance, many kids are dumped into 'special schools' where the emphasis is on preparing these kids for a lifetime of marginalisation rather than gainful employment. Many employers are reluctant to hire autistics as employees, due to the extra expense and the possibility that their 'differences' may 'disrupt' the smooth and profitable running of the workplace. Social services are systematically underfunded, and parents of autistic children have to fight to get their child even the most basic services. Again this is no accident - the system is predicated on the principle of denying autistics the right to participate in society rather than actually supporting them to do so.

There is also another side to this, one that explains the existence of attitudes peddled by such organisations as Autism Speaks. This is the role of ideas in maintaining the oppression of autistic people. In order to justify the systematic marginalisation of these expensive and unprofitable autistic people, the system requires an ideology of oppression. And thus you have the portrayal of autistics as tragedies, whose very nature makes them incapable of participating in society, which dooms them to institutionalisation and marginalisation, rather than the fault being with the shape of society. And therefore you also have the drive for cures and treatments, all of which are of course potential money-spinners for the medical industry. Note how Autism Speaks recieves oodles of corporate sponsorship, and how the kind of views they put forward have a vitual monopoly in the media. Groups like Autism Speaks are not just groups of confused or bigoted parents and professionals, they are tools of the system in oppressing autistic people, oppression that is dressed up as 'help'.

Socialists would largely accept the social model of disability, the idea that disability is a result of how society's structures oppress people who are impaired or different, in opposition to the medical model that roots the problem in the disabled person's differences and needs. As a socialist, I would argue against the idea of a cure for autism, not just because autistics have a right to be who they are but because the idea of 'curing' autistic people is part of the agenda of oppression of the capitalist system, and I also would argue that autistics have an intrinsic right to participate in society on their own terms, rather than the terms of a capitalist society where profit is more important than people's needs.

The logic of this argument leads to certain conclusions about the way forward for the movement. Instead of facing the prejudices and assumptions of individuals, we face the systematic and deliberate oppression of a subgroup by the ruling classes. Our experience of oppression is therefore a variation of the same oppression experienced by other disabled people, by gays and lesbians, by ethnic groups, women, and indeed by ordinary working people generally who are the majority of people on the planet. Instead of being a minority oppressed by everyone else, we are part of the oppressed majority. The political conclusions and strategies that we must draw are therefore anti-capitalist ones, and involve unity with other oppressed groups rather than thinking in terms of us-against-the-world. The question then, is how in practice do we put such a perspective into practice.

-------- COMMENT-AUTHOR:

ballastexistenz COMMENT-DATE:3:09 AM COMMENT-BODY:Meh, all models are just focusing on different aspects of the same thing, with differing degrees of accuracy. I try not to get wedded to any of them, and I doubt that even most people who say something that sounds like one "model" are as wedded to that model as an entire worldview as they look. (For instance, I really doubt that Rae Unzicker is/was that relentlessly individualist in all her thinking, but she was making a point about personal responsibility even within a system, and you really can't make all points at once.) -------- COMMENT-AUTHOR:

abfh COMMENT-DATE:12:56 PM COMMENT-BODY:Okay, I agree that there are commercial interests involved in the development of the prenatal test (and other efforts to make autistic people extinct) and that it's not just spontaneous bigotry. So how does that make a "siege mentality" any less justified? The way I look at it, well-funded corporate propagandists are a much more dangerous enemy than random bigots.

I don't see the world as "a deeply hostile world peopled by bigoted individuals wanting to keep autistic people out of sight and out of the social fabric." Most people didn't even know anything about autism until a few years ago. The hostility that we're seeing in the media is a direct result of the convergence of propaganda campaigns by quack-treatment peddlers, pro-eugenics groups, and greedy behaviorists.

Bottom line: Genocide is genocide, whatever its cause may be, and it has to be fought and stopped, right now. I'm not gonna sit around on my ass waiting for some glorious proletariat revolution to save the autistics. -------- COMMENT-AUTHOR:

Redaspie COMMENT-DATE:2:54 PM COMMENT-BODY:Abfh, I have very serious problems with the term 'genocide', which implies an actual mass slaughter a la the gas chambers. This only makes sense if you believe that abortion is murder, in other words its an implicitly pro-life position. That's not to say prenatal testing is not a potentially very serious issue, and indeed the current dominant ideologies concerning autistics do make it likely that a very substantial number of fetuses with autistic genetic patterns will end up aborted. However I myself can't see how you can put together a credible campaign specifically on this issue without ending up standing alongside Precious Life waving banners with pictures of fetuses on them.

Incidentally, I'm not sure why you think we should 'sit on our ass' and wait for the revolution. If everyone did that, there wouldn't be a revolution anyway. -------- COMMENT-AUTHOR:

abfh COMMENT-DATE:7:13 PM COMMENT-BODY:Yes, many people who are strongly pro-choice would use the word "eugenics" instead. My view is that a fetus should be considered a person after it develops a brain, and I think the word "genocide" is appropriate when used to describe large numbers of late-term abortions based on genetic screening. But I think we're all opposed to the same thing here, regardless of the language being used.

As for waving banners with pictures of fetuses, I wouldn't waste my time doing that because it's pointless; by the time a woman goes to an abortion clinic, she has already made up her mind, and waving banners only annoys people.

But we do need to do something to stop it... which is what I meant when I said I wasn't going to sit around on my ass waiting for the workers of the world to come to the rescue. If the pro-lifers are able and willing to help, I don't have any qualms about taking their help. -------- COMMENT-AUTHOR:

Redaspie COMMENT-DATE:8:13 PM COMMENT-BODY:Ah, well I certainly would, I'm afraid. I'm reminded at this point of the radical feminist Andrea Dworkin who, in order to try and get pornography banned, made an alliance with Jesse Helm, a racist and homophobe who, banning pornography aside, was no friend of the women's movement anyway. You do need to be careful of who your 'friends' are. -------- COMMENT-AUTHOR:

ballastexistenz COMMENT-DATE:3:52 PM COMMENT-BODY:Genocide is not necessarily accomplished by direct mass-murder, it can be accomplished by many other means as well.

The term genocide means attempting to eradicate a particular group of people based on some shared characteristic such as ethnicity etc. That eradication can take place through directly rounding people up and killing them, but it can also take many, many other forms, some of which look like organized mass murder, some of which don't.

For instance, lessening the penalties for killing a certain kind of person is one way that a genocide can be furthered, so is systematically cutting people off from the resources they need to survive, and yes, abortion can be used as a tool of genocide too. So can sterilization, for that matter. Sterilization is definitively not murder (as opposed to something that's controversial as to whether it's murder) but it's a known and common tool of genocide.

Genocide is the systematic annihilation of a particular group (ethnic, racial, cultural, whatever). It does not only play out the way it played out under the Nazis (that was merely the most famous genocide), it has many manifestations, some of which do not involve killing at all.

Some people specifically refer to disability genocide as "eugenocide", but either way it means the same thing. -------- COMMENT-AUTHOR:

ballastexistenz COMMENT-DATE:9:44 PM COMMENT-BODY:It's more than a dictionary definition of the term, it's a definition that is being pushed for by survivors of attempted genocides that don't fit the exact Nazi-type stereotype.

(And, the Nazis were not successful in any of their genocides, either. I don't think anyone claims, though, that that was not genocide, just because many people escaped it.) -------- COMMENT-AUTHOR:

Redaspie COMMENT-DATE:10:15 PM COMMENT-BODY:Well no the Nazis won't but there was a systematic attempt to eradicate an entire subgroup. Although there is widespread abortion of Down Syndrome fetuses there is no policy anywhere in government circles to eradicate people with Downs Syndrome by this method. The current situation is more a result of widespread negative attitudes towards people with disabilities. No government has as yet decided to make aborting Downs Syndrome fetuses compulsory, and until they do making equations with Nazi-style 'genocide' are dubious at best. One risks stretching the meaning of the term to the point where it becomes meaningless.

At any rate, I have to add at this point that this particular debate is surely somewhat secondary to the key question of what do we do about the issue of prenatal testing for autism? --------