thoughts from a recently-diagnosed autistic queer feminist

Archive for the ‘Politics’ Category

A Difference and a Disability

There’s a trend – and by and large a well meaning trend, to describe autism as a difference, not a disability. The intent may be to challenge the idea of it as a tragedy, as something inherently bad, as something in need of a cure, as something with no positive aspects.

My autism is not a tragedy. It’s not inherently bad. I don’t need or want a cure and being autistic has plenty of positive sides. And the world is, for me as an autistic person, disabling.

Realising I could describe myself as disabled, and learning about the social model of disability was – and I don’t think I’m exaggerating to say this – amazing. Whilst it came with a tangle of mixed emotions, certainly, it didn’t lead me to believe I lacked the capabilities I had (if anything it gave me more confidence). It enabled me to make sense of much of my life, to make, ask for, and demand changes where I could.

Maybe there are people who live in an environment where being autistic does not constitute being disabled. But to make a wholesale claim that it is a difference not a disability assumes a state of liberation we have not yet reached – and in doing so invalidates the real, lived, experience of those of us living in this distinctly less liberated world.

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Autism and Activism #2: Accessibility and ‘Accessibility’

picture of the interior of an art galleryA little while ago I was trying to write a response to an article about children and art galleries. In it I was both arguing that if galleries bore children, then that’s more a problem with the gallery than the child, and also talking about how valuable visiting galleries as a child was to me. And that’s when I began struggling with the post, because when I was talking about making galleries better suited to children, I was thinking of light, noisy spaces with lots of movement, where it was okay to run around and be noisy, where you could interact in multiple ways with the art. And when I was writing about why galleries were such a refuge for me, I was remembering how they were quiet with clear sets of rules that were laid out on signs, and how often staff were, once they realised my interest, happy to have a conversation with me where they treated me as an adult, and it was a straightforward conversation about things, not small talk with all its little tricks and conventions.

That’s not an activist scenario, but I do think it’s a good illustration of how there is often a gap between what we perceive as ‘accessibility’ and what actually makes a space accessible, and how this conflict often hits autistic people pretty hard.

Many people in activist communities have woken up, at least partially, to the idea that accessible means more than just ‘has wheelchair ramps’ but needs to incorporate the needs of people with a wide range of impairments. It’s being increasingly recognised that accessibility isn’t just relevent for disabled people, but for (say) parents, those on low incomes, those with limited transport options and so on, and to look outside these as discrete groups, which is important not least because many accessibility needs overlap

But somewhere along the way, the idea of accessibility has become divorced from actual people and what they need to fully participate and beome an athestic, a vague set of ideas about what an accessible environment is like.

The effect of this isn’t limited to autistic people, of course – an article by a local group about one of their events recently used the term “accessible activism”. The only access to that event was up a flight of stairs – I can only assume that they used the term accessible to mean it was a relaxed, fun environment where you weren’t expected to have a lot of background knowledge or commit to anything big. But when accessibility comes to mean “shiny friendly and cool”, it tends to come with a lot of noise, a lot of structurelessness and a lot of emphasis on the social side – all things which have the reverse effect for most autistic people.

I write this as a call to think about what really does make spaces accessible – and in the next post I’ll be sharing some ideas about what people – both autistic, NT and otherwise – can do to make activism and activist spaces more accessible for autistic people.

 

This is part two of a six part series on autism and activism. I will be linking other post below as they are posted:

Part 1 Introduction
Part 2 Accessibility and ‘Accessibility’
Part 3 Immediate Ideas
Part 4 Getting to the heart of it
Part 5 On the positive side…
Part 6 Looking forward

Autism and Activism #1: Introduction

Around 2005, I went to a political conference in another city. I went to a number of them in those years, and I suspect most of this one will have been much like the others. I’ll have argued and cracked jokes and drank beer and eaten Chinese. I’ll have returned, lent and borrowed books. I’ll have met new people and learned a lot. But I don’t remember that really.

What I do remember is waiting the next morning for the people driving back to pick me up. They’d planned to leave at 8:30. There was no sign. I texted. There in five minutes, they said. They weren’t. Nor were they for maybe the next hour and a half.

I was absolutely beside myself, both with panic and with disorientation. I didn’t have the money for a bus fare home, and not only was I scared of hitchhiking, I didn’t know how to get to an appropriate main road. I wasn’t even sure which way was south.

That they were being vague and disorganised and that didn’t matter to them did not even cross my mind. Nor did it occur to me that the middle-aged professional in whose house I was staying would almost certainly have both the ability and willingness to lend the relatively small amount of money it would take a scared, broke, 20-ish activist to get home should it come to that. Even if it had, there’d have been no way I could have asked her.

You know how this ends, right? They turned up and didn’t see there was a problem. I pretended there wasn’t. I got home.

I’ve been involved in one form of political activism or another for the past decade, and sporadically in the years before that, and over that time I’ve felt simultaneously completely at home and completely at odds with not just activist spaces and communities, but also some of the ideas and values that are often taken for granted.

My autism diagnosis gave me the ability to contextualise and make sense of many of these experiences, and they’re what I’m hoping to express in this blog series. I’ll be talking mostly about queer, feminist and general socialist activism, because that’s what I’ve been most involved in, but a lot of it is widely applicable. I’m very new to autism activism, so I’m unlikely to talk about that much. I’ll be writing about what makes these spaces accessible and inaccessible to me, as an autistic person, but also what makes them important, and exploring values that may seem at first glance to be contrary to how we think and interact.

So thanks for reading, and I’m only writing from my own experience, so do feel free to comment with your own ideas and thoughts. The posts will be linked here as they are posted.

Part 1 Introduction
Part 2 Accessibility and ‘Accessibility’
Part 3 Immediate Ideas
Part 4 Getting to the heart of it
Part 5 On the positive side…
Part 6 Looking forward

Anthea to ‘I Wish I Didn’t Have Aspergers’ : #AutismPositivity2012

I’m tempted to start this post talking about some of the awesome things that have happened in my life, and reassure you that they will happen to you too. It’s tempting to talk about my job and how I saved up to put a deposit down on this house which I’m so slowly renovating and how fantastic it is that I got a wall of bookshelves up this weekend. I could tell you about how I enrolled in an MA this month, about the fiction I’ve had published, the political activism I’m involved in, my partner of six years and counting, the friends I’ve made. I could say that awesome things have happened for me, and they will happen for you too.

I’m pretty confident awesome things will happen for you, though they may bear little or no resemblance to those that have happened for me. But I remember being a kid and reading these stories of Outsider Isolated Children and every time I started to identify with them they would suddenly become popular or beautiful, or they would discover a secret sporting talent. I never did, and it just made me feel even more alone.

It’s not politically sound, either, to rely on such achievements as indicators of human worth. The fact that it has taken me a fuckload of hard work to get where I am today does not negate the fact that I’ve had a fair bit of luck as well. Growing up in a book-filled household, having the ability to access a university education and my racial background and the passport I hold, amongst other things, have made these a lot easier than they would otherwise have been. But even that’s not really the point. You’ll do what you can. You’re a person irrespective.

You’ll do what you can, and there’ll be some things that will come easily, some you’ll never manage, and many that will be harder or take longer than they do for other people. Many times you’ll find alternative ways of reaching the same place, or that the place you thought you needed to be is actually not where you want to go at all. And there’s one important thing you have:

You know there’s something wrong.

Perhaps those weren’t the comforting words you expected. Perhaps that’s because you think the thing wrong is you, or rather you’ve mentally sectioned off part of yourself to be some bouncy fuzzy monster called Aspergers that claws at your head and chases away people who come near you. And you wish it would just leave you the fuck alone.

But there’s no monster. There’s just you, you and the world you live in.

In Philip Pullman’s His Dark Materials Trilogy, there’s an alien race called the Mulefa. They live in a world covered with smooth volcanic tracks, and they have spurs on two of their legs onto which they fit seedpods from trees they cultivate. Propelling themselves with their other two legs, they can whiz along the tracks at high speed. It’s all pretty awesome.

But imagine if one is taken to a world where there are no volcanic tracks, only muddy fields. They move slowly and keep sinking in them, and their spurs catch on tree roots, injuring them. There are no seedpods to be found.

Well that’s you, about now. You’re hacking away at your spurs, trying to make them go away, trying to make yourself normal. You’d like to go looking for seedpods, but you’ve been told that’s a stupid thing, a childish thing, that you’ll be using them as an excuse, that they’ll make you even more abnormal.

There are some crucial differences, of course. First, the problem is our world is more social and political structures, rather than the landscape. That may seem harder to change, but I promise you, volcanos are pretty scary things to mess with. Second, the way people like you and I are excluded is no accident. It’s systematic. And there are lots more of us, excluded and oppressed under different pretexts, purely to sustain the fucked up economic system that benefits not very many people at all.

It’s okay to feel shitty. We all do sometimes. But when you do, you can fight yourself, or you can find the problem. The former may seem easier, but the latter will have prettier results in the long run. And there’ll be lots of us on your side.

And keep cultivating those seedpod trees.

Saying Yes

Someone posted a link to Jonathan Mitchell: Neurodiversity, Just Say No to Facebook. My attempted reply was getting more than a little our of hand, so I decided a blog post was in order. It would be fair to say (the title’s a hint) that I don’t agree with much about this article. At the same time, though, I do think it’s reacting to a trend that is somewhat problematic; justifying ourselves by pointing to either the advantages of autism or people with autism who have done amazing things. This leaves out a lot of our experiences, and many of us entirely.

After a description of neurodiversity I would describe as fair by incomplete, he talks about examples of people or behaviours who, he says, the social model of disability fails to appropriately accommodate:

Is it morally justifiable to force a woman to have sex with me and other socially starved autistics? Is discrimination the same as sexual disinterest? These are issues that neurodiversity can’t seem to reconcile. I also have problems applying myself and staying on task which has made it difficult for me to do many things I wanted to do like learn computer programming and about computers and do more writing and do requisite research for certain types of writing. It has also given me perceptual motor impairments and bad handwriting impairments. What do these things have to do with societal accommodations. What about…  severely autistic people who can’t talk and bang their heads against walls? How will societal change stop these behaviors.

There seems to be a common misconception of the social model of disability that it says that if people are nicer and don’t discriminate directly and make buildings more accessable for those with mobility impairments, then people with impairments won’t have any difficulty with things that have caused them problems in the past.

Like Mitchell, I struggle with handwriting. It’s slow and painful. These days, it’s not such a problem; I have a netbook and other computers, my workplace is quite happy for me to use them, and when I had exams in the past couple of years, I was able to take them using a computer. In the past, it’s been significantly disabling for me. A society that accommodates me wouldn’t mean I could magically handwrite with no problems. It would mean that I always had access to appropriate tools such as a netbook, irrespective of my financial status, and had done from a young age. It would mean that no future employer would make me write by hand, or judge me because of my inability to do so. It would mean that people wouldn’t consider a typed letter to show less love than a handwritten one. The same with those who are non-verbal – they wouldn’t magically start speaking, but they would have access to appropriate communication aids and a society that accommodates multiple methods of communication (Mitchell does broach this, but I think he fails to take into account that such a society with invest much more in technological development of better aids, nor that a society which places excessive weight on verbal communication judges such aids by verbal standards, rather than on their own merits). They would still have the impairment, but they would not be disabled by society.

I really don’t know enough about headbanging to talk in detail about that, but, as appropriate – less stressful environments, effective substitutions or ways of engaging in it safely, understanding and lack of judgement, could be appropriate accommodations. Mitchell doesn’t go into enough detail about his difficulties with learning to talk about that either, but things ranging from medication to help concentration (ah, another misnomer that us neurodiversity types are all anti that – we’re not!) to an appropriate physical environment to study arranged in blocks of appropriate length would all be ideas. (I’m going to come back to the relationships side, because I think that merits its own post.)

I’m not claiming I’ve solved these. But I do believe that a society where the presence of any of these impairments is not disabling is possible.

Mitchell goes on to talk about claiming figures like “Einstein and Thomas Jefferson and Isaac Newton” as autistic. I have a lot of sympathy for his reaction to this – not because I necessarily agree with his “undiagnosis” of them – I honestly haven’t studied any of them enough to say either way, though there are some ‘greats’ I’m convinced were. But I think we talk about figures like these too much, and it’s to our detriment. It’s understandable why, of course. We’re told we can’t achieve anything – and then to learn that people like this may have been autistic is a huge boost to the self confidence. I believe in reclaiming historical figures because we’re so often written out of history.

However, our claim to respect as human beings should not rely on us going Great Things, much less that people like us did Great Things. Placing excessive weight on these claims excludes the (vast majority!) of us who will never come anywhere close, but more importantly it weakens the heart of the argument which our claim to be free of oppression irrespective of what we accomplish.

Mitchell again:

One young, angry autistic female even goes as far as claiming that persons desiring a cure for autism are responsible for the murder of Katie McCarron, a 3-year-old autistic girl who was brutally murdered by her mother when her mother could not deal with her autism and other autistic toddlers who were senselessly murdered by their parents.

I find his “young, angry autistic female” to be quite problematic and offensive, but that aside, I don’t know, specifically what she said. There is a huge difference, however, between individual wanting a cure and a current in society that views us as problems to be cured. Maybe she said the latter, maybe she said that individuals wanting a cure are responsible. If so, that was not something I’d agree with, but it’s not a majority view, and people often say thingswhen they’re sick of people like them being murdered.

Mitchell goes on to talk about those expressing support for neurodiversity:

I also notice that many of them were not diagnosed until they were adults, some have married and some have kids. With one exception, none of them have, to the best of my knowledge ever been in a special education setting as I have. The one exception is someone who was able to talk as a child and then allegedly lost her speech as an adult. Some persons on another web site have even accused this person of being a fraud.

Well, we obviously read different blogs and communicate with different people; I’ve read work by several who were in ‘special education’, some who are non-verbal, others who have not had (but want) a romantic relationship or a job. For someone wanting to emphasise the difficulties people have, the disability angle, Mitchell ignores that achieving superficial goals and having real, severe, difficulties in life are not mutually exclusive – and some would say that he, having worked in skilled employment, was part of a particular so-called high functioning subset himself. That said, I do think we need to include those who are autistic in a wider range of ways more.

 Another thing that comes to my attention is that a disproportinate number of them are females. It seems as many or more females than males are claiming to be autistics with a neurodiverse inclination. This is in spite of the fact that the literature on autism has consistently shown the condition to have a 4 to 1 ratio of males to females. The ratio may be as high as 10 to 1 in the higher functioning groups according to some studies. A cliched argument among allegedly autistic neurodiverse females is that autism is underdiagnosed in females. Females are not as aggressive, they are more inclined to be social than boys and can pass more easily so they are not as often diagnosed.

I find Mitchells questioning of other people’s identities here and later to be really offensive. Seriously, don’t do that shit. I also think he oversimplifies some of the discussed reasons for underdiagnosis of women. But I think there’s something else going on. At feminist events I’ve been to, there’s usually a much higher percentage of queer women than in the general population. For a number of reasons, I’d guess, but partly because they’ve thought more about gender and about their identity, they’ve (on average) had more experience of oppression and feel the need to stand up against it. Also, a lot of traditional environments (such as workplaces) neuroatypical men have associated have often been less open to women, particularly those in their fifties and above which is, I think, where a number are concentrated – they have more need for the neurodiversity movement to reach other people like them.

When it comes down to it though, whether individuals want or would take a cure isn’t a big concern of mine. They’re entitled to make that decision should it ever become available based on their own lives and experiences. I’m not fighting that. I’m looking to a world where no-one needs to look for a cure because barriers are placed in the way of their participation of society, a world where we all feel at home.

Environmental causes and triggers

For those who can’t watch it, the video above is a song listing some of the things infamous British ‘newspaper’ The Daily Mail claims cause cancer:

Age, air, alcohol, aspirin, calcium, ham, honey, eggs, dogs, dieting and soup. Being a woman, Being a man, bubble bath, food from cans, being black, wearing bras, left-handedness, speedy cars, oestrogen, climate change, baby food, the menopause, beef, beer, pizza, pork, cereal and worcester sauce, childlessness, children, vitamins, bacon, chocolate, retirement, deodorant and facebook!

Unsurprisingly, I think of this every time there’s a discussion around what causes autism. And I’ve been having a few of those discussions in various forums, so I’m going to try and consolidate some of my thoughts into a blog post.

First, I don’t consider the cause that important. I can think of a few possible reasons for wanting to know the cause: development of a cure, early diagnosis and therefore access to support services, to make a political point, to stop the spread of misinformation or for pure interest value. Well, I don’t believe a cure is possible and wouldn’t believe it if I did. The early diagnosis has some currency, but the age of diagnosis is much younger than it was, and seems to have achieved that by better awareness. To reduce prejudice? Reminds me of the people in the queer community who insist sexual orientation is ingrained because as soon as people realise it’s not a choice or damage by environmental factors, homophobia will end. “Because once people realised that skin colour was genetic, racism disappeared,” the argument goes. Stopping the spread of misinformation is admirable, but the vaccine link has been disproven (no, I don’t want a discussion about this) and that doesn’t seem to have stopped that one being trotted out at every opportunity. And yes, I am interested in the subject, but not half as much as I am in other aspects.

So there’s pretty limited reason for all this research into a possible environmental cause, as far as I’m concerned. On the flip side, this constant looking for causes does a fuckload of harm, harm that goes beyond simply those causes being wrong, or that it diverts attention from other areas. I find it quite worrying that so much of this plays into food moralism, and that given the risk of negative reactions to “food pickiness” resulting from sensory issues leading to eating disorders, children are being further restricted by being placed on GFCF diets irrespective of whether or not they show actual signs of intolerence, simply because they’re autistic. But the harm is far more fundamental than that.

At the heart of it, any attempts to search for a cause, irrespective of the nature of it, are a pathologisation of autism. Rather than looking at why some people are autistic and some are neurotypical, looking for a cause presents autism as something a person has or lacks, an addition to or deficiency in, a standard person who is by definition neurotypical. It’s like how the body we generally consider male is considered standard, and a female body is a male body without the genitalia (and the genitalia that women’s body has ignored). Our lives would be easier if the dominant view was more that some people are AS and some are NT – the latter are the majority and better accommodated in the world, but no more standard.

Second to the discussion about causes is the one about triggers, about environmental aspects which make our autism better or worse. I’m not talking about things like sensory overload but things like food or medicine that accentuates autistic aspects or a person. I’d dispute the idea of making autism better or worse; people are autistic, and they have different abilities and are disabled in different ways. It doesn’t make them more or less autistic.

Still, I understand the point being made here. There are foods I have limited tolerance for. Large amounts of one send my anxiety through the roof – and my own limited reading indicated this is likely to be related to my being autistic. Would research into this be helpful? Quite possibly. But as long as we view autism as a separate _thing_, autistic people are excluded from much research into (for example) anxiety because they have an additional “condition” that would complicate the results.

I know I’m going to have to keep saying this for the rest of my life, but I wish all those people who were so keen to ‘unlock the mystery’ and find a cause or cure or whatever else would show a little more consideration for what they actually can do to make things more accessible. Things like turning music down, explaing a process beforehand, turning up at an agreed time. Without the stress of those, we’d have more resources to speak for ourselves, as well.

Conversations I want to have

  The following was recently published in ‘Thinking Differently’, the quarterly newsletter of Autism New Zealand Inc.
  ‘Your Letters’
 

  This is an excerpt from a letter we received from one reader, who had been married to a man with Aspergers Syndrome. She discovered he’d been sexually interfering with her 11-year old twin daughters and eventual divorced him.  The letter is extensive, but she presents a valid point of view, based on her experience.

“The Law is there to protect others from those behaviours. Aspergers should not be exempt from the law or being locked up. I do believe many serial killers and rapists have Aspergers. They can be cunning and devious. Aspergers do commit crimes, probably more often than normal people. We matter too.”

H—- F— (abridged)

I’m angry and saddened that it was written, more so that Autism New Zealand saw fit to publish such an offensive letter whilst stating that it presents ‘a valid point of view’. But I’m perhaps most frustrated at the way it has set the agenda, that to counteract this it feels necessary to scrabble round for statistics saying that we’re not any more likely to murder or rape than “normal people”. I don’t want to have to come up with examples of how we’re the good “Aspergers” who pay our taxes and follow the law and have never had so much as a speeding fine. Those aren’t the conversations I want to have.

I don’t think there’s any way to usefully engage with the idea of ‘serial killers’. Is regular murder not shocking enough? There really aren’t enough serial killers out there for this to be a meaningful discussion. I don’t believe aspies are any more likely to be rapists than the general population. If there’s evidence of a statistically significant disparity, that needs to be looked at, but in a country and world with the rates of rape and associated violence that exists, along with the terrible conviction rates and limited government willingness to do anything about either, I feel there are more important things to engage in that idle speculation about who does it most.

But let’s leave aside the serial killers and the rapists for a second. Let’s talk about the aspies who end up in the justice system for vandalism, for theft, for getting into fights or retaliating against violence. Lets talk about those who have not done what they’re accused of but can’t stand up to questioning or navigate the legal system (as a teenager I admitted to shoplifting I hadn’t done (fortunately avoiding a criminal charge) because security guard told me I had no choice but to admit it and I believed that, literally, and because I didn’t see any way anyone would understand my compulsive need to read song lyrics anyway). If the main backbone of the conversation is that statistically most of us are law abiding, if those of us who can go round flaunting our jobs and our taxpaying and our relationships and our degrees and our mortgages and our nice clean criminal records, then we’re feeling good about ourselves and changing absolutely nothing.

So instead, let’s have a conversation about a world which makes things unbearable for us, and when we lash out, potentially at people or at objects, the solution is not to change the environment to prevent a reoccurance, but to punish us. Let’s have a conversation about how difficult legal systems are to navigate, how atypical facial expressions or eye contact are so often assumed to mean guilt, how a neurotypical person can sometimes avoid a charge for a minor offence with a “sorry mate” whilst pedantic questioning of language and the nature of the offence is almost certainly going to lead to an arrest. Let’s talk about how atypical movement or gestures or reasons for going to places is viewed as grounds for suspicion, how silence is viewed as stubbornness or lack of co-operation, how literal interpretation of questions is viewed as rudeness. Let’s talk about how the effect is doubled, tripled for people already disadvantaged in our legal system.

Let’s not be afraid to have a conversation about prisons. When people say we don’t lock up autistic people/mentally ill people/intellectually impaired people, I always want to ask what the hell they think prisons are other than a dumping ground with  disproportionate rates of all of the above. And I get why we’re afraid to talk about this – we’ve spent so long trying to say that we’re good people really, we’re not scary people, we could be your neighbour. But we need to challenge the assumption that there’s a perfect correlation between ‘in prison’ and  ‘bad person’, or that crimes exist in some kind of vacuum as an indicator of someone’s morality, rather than being socially constructed.

Yes, it is worth challenging such obvious bigotry, the inaccruate assumptions, the stereotyping and the offensive language. And then let’s move on. If we’re talking about Aspergers and crime, let’s talk less about parents who murder autistic children and are then treated with sympathy, about autistic people who have been raped and are then told their non-verbal communication is inadmissable in court. Let’s talk about how some cunning and devious aspies can apparently get away with everything (something I’d guess would have far more to with the numbers who get away with child abuse generally) and more about how the legal system fails aspies on both sides.