Inconvenient Bodies

My body is inconvenient.

When I’m moving house they say: only flats with stairs available. You want more accessible? Wait longer; pay more; move elsewhere. I scour the tube map – I can get on here but I can’t get off here so I’ll have to get the bus here and do these uncomfortable bounces around London to get where I need to be… And then I get to the meeting and they say, oh, sorry, it’s hard to find a pub without stairs – can you just do a few? My body doesn’t fit the London world.

In the ‘academic careers’ session they say: Be ready to go anywhere in the world, at short notice, for any job. I look down at my weak, dislocation-prone, support-requiring body. I think about the disability systems that I would need to fight my way into, in every new country (or even new city) I went to – social care services and work support and funding. I think about the adjustments that universities would need to make for me. I remember the stories of disabled academics working in cold huts on the edge of campus because their departments’ offices are inaccessible. My body doesn’t fit the academic world.

When I’m attending autism conferences they say: Yes of course we’re accessible. But… they’re not. I cram my body into narrow hallways, am shoved around by crowds, run over people’s feet. I worry about old buildings and wonder whether I should risk my physical health for the benefit of neurodiversity support. I get stressed. I have meltdowns. My body doesn’t even fit the neurodiversity world.

So I choose. Miss out on life entirely — or fit myself to their worlds, contorting and twisting and breaking my body to fit the spaces where normalcy reigns?

Lately I’m thinking and writing about the embodiment of disability discrimination. I don’t think it gets written about enough. Disability discrimination does not exist in an interpersonal vacuum. It oppresses the body, and/or the mind. Often, it’s not a case of “You can’t come in,” but more a case of “Come in, if you can twist your body and mind into our shapes.” The square peg squeezes into the round hole… and it’s never quite the same shape afterwards. My body is inconvenient — but in the end, to save them discomfort, I allow the the inconvenience to become mine. And the pain, and the physical harm, and the long-term effects on my health (physical and mental). The embodiment of the oppression.

Disabled readers: How do discrimination, disablism, inaccessibility and exclusion affect your body and mind?

 

Advertisements

STOP QUOTING THE POLICY AT ME! (Or: Your Piece of Paper Doesn’t Exclude Me Any Less)

I am so tired of having ‘the policy’ quoted at me.

This year I wanted to attend Autscape. I am tired, so tired, of daily trying to fight my way into the neurotypical world. I was excited about an event that puts autistic people at the centre, makes itself accessible to all autistic and neurodivergent people.

Then I found out it wasn’t fully accessible to wheelchair users.

OK, I thought. Maybe I can make it work for me. Maybe I can be creative, work around issues, with the help of the organising committee who will no doubt support me with information and help.

Then I found out that it’s their policy to focus on wheelchair accessibility only ever other year, to keep costs down the other year. And the familiar disappointment kicked in. And I just… gave up.

I found it a little ironic that the theme of this year’s Autscape was ‘creating autistic space’. Autistic space that excludes certain autistic people. And that when I talked with a delegate over twitter about a session running there on the subject of exclusion in the autistic community, I was told that wheelchair accessibility had already been discussed (with the hint that it would not be discussed again). While the person no doubt meant the comment helpfully, it was a reminder that even in discussions about who is ‘in’ and who is ‘out’, a whole excluded group has already been ‘dealt with’ and the conversation there has ended.

All because of a policy.

To quote an email I sent to a friend today:

I told my wheelchair-using neurodivergent friend about this and she wondered how the autistic community would feel about a neurodiversity conference that wasn’t accessible to autistic people every other year. Despite the fact that everyone is quoting the bloody policy at me every time I bring this up, telling me that it will be accessible next year is not good enough… I sobbed my way through reading the Autscape twitter feed this year. And deleted a tweet complaining about access because I worried I’d get shouted at. Really sucks.

Pagan Parallels

I’ve talked a lot, mostly on my other blog, about inaccessibility in the Pagan community. It continues without much sign of improvement, especially in London. The excuse gets rolled out a lot when I complain – whatever the excuse is, whether needing privacy for discussion, or the inaccessibility of pubs in London, or (funniest of all) that no wheelchair users ever come to the events. (Really?! No wheelchair users come to events held in an upstairs room? You do surprise me!)

For the past couple of years I’ve also been struggling with OBOD‘s approaches to accessibility and policies about certain disability issues. (More on that can be found on my spiritual blog when I feel up to discussing it, and maybe at Gods and Radicals soon.) Once again, it’s not so much the existence of the policy that’s the problem (although it is a problem). Worse is the way that people respond every. single. time. I mention it. “This is the reason for the policy! Learn about the policy! It is a good policy!”

Brick walls, and communal dismissive attitudes, and regrouping protectively around the boundaries of your organisation. These are the very definition of exclusion.

Please Stop Quoting the Policy At Me: Some Effects of Brick-Wall Exclusionary Policy-Citing

It’s one thing for something to be inaccessible or exclusionary. It’s quite another for you to have enshrined that inaccessibility in a policy – and then to constantly quote that policy at me as justification for your inaccessibility. I know there’s usually a reason for inaccessibility. I know it’s sometimes a really good reason. Can we please assume that, as an informed disability rights campaigner, I already know the reason, disagree with it, and would like to move on to talking about ways forward, alternatives that might include me and people like me? Instead, though, I meet the brick wall of a hundred people quoting the policy whenever I mention access difficulties. Or saying things at me like “This has been discussed before,” as though that solves the problem. Somehow, never an apology. Never a “Here’s what we’re in the process of doing to try and fix this, longer-term.” Never even an acknowledgement that this is a problem, a policy of exclusion, an example of disability oppression. Always the justification. Always the assertion that we are right, and that I am the one with the problem.

As a result, I feel excluded from your community. (Which becomes your community, not mine anymore.) I increasingly withdraw from your events, including those that are fully accessible. I become avoidant about talking to people from your group about access at future events. I become scared of your group. Mentions of it start to be upsetting to me. Your group stops representing safe space, and starts representing exclusion and oppression.

I Keep Offering Help…

I don’t have a lot of  free time. The time I do have is spent dividing up my tasks (PhD, other work, volunteering in many ways, personal life) against my spoons, trying to eke them out into something that approximates a rewarding life. Yet I will always respond to inaccessibility with an offer to help fix it – usually for free. Consider taking me up on this. I charge private organisations around £250 per half day for this help. If I’ve offered you help to fix something, you’re being offered something valuable from a trained and experienced Disability Equality Trainer and widely-published writer on the subject. If you turn me down, and then get taken to court by someone with more determination than me, and find yourselves unable to say you’ve done anything, you might start wishing you’d accepted the help. (I’m talking mainly to the dozens of Pagan orgs and groups I’ve offered help to, here.)

There’s a related question, too: how far do I have a responsibility to fight these things? Can I belong to OBOD when I know that one of their policies, and other of their accessibility practices, are problematic for entire swathes of the disabled community? Can I go to Autscape knowing that their policy is to exclude wheelchair users every other year? In both cases, the policies do exist for really good reasons, in one case (Autscape) with the aim of not excluding others (people living in poverty). Intersectionality is complex, and the real world is a complicated place. So what is my responsibility to campaign and fight here? Do I have a personal obligation to fight and campaign? And how does that affect my right, and need, to live as ordinary a life as possible? (I need spiritual practices/groups that make me happy and I need safe autistic spaces. Am I allowed them, as a campaigner with integrity?)

Accessibility Has More To Do With Imagination Than Money

Yes, accessibility can (sometimes) be expensive.

Yes, inclusive policies can open you up to other kinds of legal issues.

You can still make change, with enough imagination. Druid Camp is working with me on making their camp more accessible for more disabled people. If they can manage that in an empty field, you can change a few things with a little creative thought.

And by accepting help from those who offer it.

And by not shouting people down, but instead being willing to listen and change.

Final Thought: A World of Disappointment

For me, my experience as I engage with an inaccessible society is one of consistent disappointment. I meet disappointment about 80% of the time that I want to do something other people can do. And I am disappointed in people I want to think better of.

I would like to live in a world in which I experienced a little less disappointment.

And this is why we fight.

Resources

I’ve recently been writing about exclusion from universities and churches, in relation to my research, for a creative research journal that’s coming out soon. I’ll link to it here when it’s out.

I’ve set up a Facebook group for marginalised Pagans from minority, oppressed and excluded groups. Do join if you fall into that category. I’d like to get allies together to work on some of these issues.

Cross-posted to my Pagan blog.

A bit about Asperger’s and how it affects me

It’s very hard to have Asperger’s when you’re a highly-intelligent person who is able to mask it (though only through incredible, exhausting, constant effort). Especially when the mask falls, when you’re unable to keep it up anymore, and people get a glimpse of your reality and don’t know what to do about it.

I write about Asperger’s a lot. But there are still some things I don’t explain about it, and I think I should. Here is some more stuff about how Asperger’s affects me. (Note: this is not a comprehensive list. I could have written three times as much. But it would have got boring.)

And people who have known me a long time, since before I had this diagnosis, may be confused about how I’m now categorising things that I used to see differently. Just know that I have found it so helpful to have a diagnosis and to learn that these things about myself do not mean that I’m broken, or wrong, or ill. They mean that I’m different and that the world doesn’t cope well with my difference. Getting a diagnosis has been the most helpful thing for my self-image that has ever happened to me.

Please note: Do not tell me you understand, unless you have Asperger’s or autism too. The likelihood is that you may think you do, but you really don’t. Instead, please listen and learn. In return, I will listen and learn about your life, about the things that are relevant to you. I have a hard time when people say “I do that too, and it’s normal.” Usually that means they have not understood the extent of how difficult I find these things. Instead of ‘I understand’, consider saying ‘I hear you’ or ‘I’m listening’. Thanks.

– I get very tired from ‘pretending to be normal’. 

Trying to act like a neurotypical person is exceptionally hard work. I have to think about every single word I say, every gesture, every action, every aspect of social interaction, and more. I have to calculate things like when to speak in a conversation (every time, which in even a five-minute chat can be exhausting). I have to manage my emotions to a very careful degree – they make me do things that people respond negatively to, but I don’t know what those things are or how to avoid doing them, so I spend a lot of time sitting quietly and trying to work out if I’m showing any sign of emotion or response and whether it will upset people. I often go too far the other way and talk and talk and talk, sometimes inappropriately for the situation I’m in.

I don’t understand sarcasm, although I have learnt about it by rote and through a lot of negative encounters with it, so now I can sometimes recognise it – but it’s always painful. I don’t understand most metaphors or analogies, and I have to pretend that I do, even when I’m deeply confused by something that someone has said (which could be something as simple as ‘I’m so tired that I’m about to drop’ – does the person mean it literally? – figuring this stuff out can take up all my mental and emotional resources in a conversation). My tone may be inappropriate, because I don’t understand about tone and what’s wrong with the words I’ve said, or what they may communicate in the mysterious word of the non-verbal. (If you think I’m being aggressive, please ask me what I mean. I probably don’t intend to be!)

– I can’t easily follow (or understand) social rules and conventions.

One of the worst things here is when someone asks ‘How are you?’ First of all, I’ll tell them, whether they really want to know or not. Secondly, I always, always forget to ask about them. Social niceties are not easy for me. It’s not that I’m not interested. I’ll ask all sorts of things about the other person when it’s relevant to what we’re really talking about. I just can’t remember the rules. I won’t ask about your day or inquire about your children’s health. Remember: it doesn’t mean I don’t care. Tell me something real about you, and I’ll be fascinated and want to know more. I just really have trouble with small talk. Get to the point!

Earlier this week I had a great chat with an autistic person who is doing research that overlaps a bit with mine. We didn’t start with social niceties. We dove right into the details of our work, our lives, our research. Half way through the conversation I realised I hadn’t asked the other person anything about her life, so I asked a thing. But a thing that was relevant. I still don’t know anything small-talk-ish about her – where she lives, whether she has a family, what else she does other than her research. I know the important things, the things we were there to talk about. The rest I’ll pick up at some point, if I ever need to know. (Does it really matter anyway? If it’s important enough to her, she’ll tell me. If not, we’ll keep focusing on the big stuff.)

Relatedly, you may find I don’t make sense during a conversation. This is usually because I start talking about something that I think is relevant, but other people don’t understand my thought processes. Similarly, I very regularly misunderstand the meaning of others’ speech. Again, I spend a lot of my time trying to pretend I’ve understood. Like a deaf person pretending they’ve heard so that they don’t ruin the conversation, I may just nod and smile a lot, but not have a clue what you mean. I’m trying to learn to say “Could you please rephrase that?” – but it’s hard, especially when people get frustrated with me for not understanding.

– I have cognitive difficulties.

It can be very hard for me to get people to believe this one. I don’t *seem* cognitively impaired. But I am. I have some serious memory problems (please don’t be offended if I forget your name or something you’ve told me about yourself). I also find it very hard to recognise faces, which means that if I meet you for the second time, I may forget that we’ve met before. Please excuse my constant “Have we met before?” type questions. (I’ll soon remember, when we start talking.) I also have some theory of mind difficulties, which means I spend most of my time trying to work out other people’s intentions and getting it wrong. (It is exhausting.)

– I have overloads and meltdowns.

This is one of the most difficult things about Asperger’s. Out of nowhere I can get sensory overload or emotional overload that can lead to a meltdown. At which point I start looking and sounding like a child having a tantrum. I find this so embarassing, as a professional and an adult and so on, that I usually do my best to disappear and have these on my own. I never, ever want anyone to see, because it will affect my self-image and your view of me. But at the same time, I often secretly wish someone would help… 😦

– Wishing I wasn’t like this affects my mental health.

I experience obsessive thoughts, especially over ‘getting things wrong’ socially or otherwise. (Spending 24 or 48 hours being able to think about only one thing, literally, is not fun. It happens a lot.) I have high anxiety, which often comes out in more obsession – I may only be able to talk about one thing for a few days, and that can seriously piss others off. (SJ knows this one well.) It can look like I’m only thinking about myself, when in fact, I just want to put my mind at rest about a thing that’s worrying me (which can be anything from that cable on the floor that someone may trip over, to a thing I need to fix, to the health of another person and whether they might die…) I get a lot of depression, including over not being good enough.

–                                                     –                                                  –

I share these things on my blog, not because I want attention (in fact I spend my life trying to avoid drawing attention to myself and trying to avoid people noticing I’m different), but to avoid misunderstandings. It’s the worst thing in the world when I get it wrong – when I get anything wrong – and offend, upset, frighten, confuse, irritate or frustrate someone. I don’t want to do any of things.

But at the same time, I wouldn’t want to be ‘normal’ either. I am different, and that’s good. The problem isn’t with me. It’s with the society that expects me to behave in a certain way, to fit in, and demands things from me that I can’t give – not without exhausting myself and spending my life pretending to normal. As you can imagine, the result is often intense anxiety, depression, and worse. But it shouldn’t be. I shouldn’t have learnt to hate myself for being different. I should be able to love and appreciate the beautiful variety that I contribute to in the world.

Impairment, Disability, and why we still need the Social Model…

The reason I’ve been absent from here for, like, weeks at a time is that I’m writing an essay on impairment, disability and the body. (Why yes, I did decide to jump straight into one of the most controversial issues in the whole of Disability Studies and see if I can swim. Not sure what the verdict is yet. If I drown, I’m sure you’ll hear about it.)

It turns out I’m more committed to the social model of disability than I realised I was.* I knew I was a fan – what else has changed lives, motivated mobilization against oppression, and brought people together as much as the social model has? But, being a person with a chronic illess (actually several chronic illnesses, including a mental health problem) as well as a disabled person, I’ve also long been aware of the shortcomings – not of the social model itself, but of what’s been left out in its adoption by the disabled community. It doesn’t talk about what Carol Thomas calls ‘impairment effects’ (which are different for everyone, but might include pain and fatigue). That irritates some people, including feminist critics (who think the social model is influenced by patriarchy) and postmodernist academics (never read Tom Shakespeare, never ever, very silly man), all of whom think it is incomplete and either needs altering or dumping.

And yet, despite all that, I remain convinced that the social model is still the most powerful tool we have for change.

It’s an awfully odd experience, sitting in a classroom full of people who aren’t even bothering debating the issue, since they’ve all decided that the social model doesn’t need changing because it is the way to change the whole world, in all areas from euthanasia and eugenics to education and health/social care. It’s brilliant, of course. (If a bit disappointing, as I wanted to sound off about Tom Shakespeare. Although instead I got to sound off about student media that publishes disablist crap and gets away with it. More seriously, I did want to talk about Liz Crow’s amazing call for the disabled movement to start considering impairment. But I shall write about it in an essay instead. There’s some incredible writing out there for those who want pain, fatigue, terminal illness and other impairment effects to be taken more seriously in the disability rights movement. I can recommend reading, if anyone’s interested.)

But it’s also got a less empowering edge to it, that ongoing experience I’m having of being surrounded by non-disabled allies (my class is made up of about a 3 non-disabled to 1 disabled student ratio this semester) who have made up their mind about how infallible the social model is. It feels just a bit too much like religious fundamentalism to me. And maybe even more dangerous than that, since it’s not quite ‘nothing about us without us’, however fantastic, well-read, well-meaning and committed to the cause these people are. This became really clear to me last week, in a conversation with one of them (an awesome person, btw) who wasn’t willing to listen to my opinion that life is, arguably, always worth living, even if that life involves quite a lot pain. He didn’t mean anything negative; he thought he was representing people who didn’t have a voice in that argument. But then, that was exactly the problem.

And it was then that I realised exactly why ‘nothing about us, without us’ is an absolute essential. Yes, it might leave non-disabled allies feeling excluded – that’s a risk we’ll have to take. And we need those allies, and should continue to welcome them into the cause. But they can never be allowed to speak for us. That’s at the heart of what the social model stands for. Attitudinal barriers are everywhere – even among the most enlightened of non-disabled people. While it’s extremely important to ‘bring back’ (to quote Liz Crow) our experience of impairment into the wider debates of the disabled community, the social model has to remain at the forefront of everything we do – at least until every single barrier, attitudinal or otherwise, has been purged from our society, and we speak for ourselves.

I should be getting some of this into an essay, but I’ve got a cold. (To quote The Girl this morning: “This is what happens in November. There are viruses, and I have them and then you catch them from me, and then there are wheelchairs…” Heh.) So instead I’m watching Stephen Fry in America, and a bit of Firefly. Best not to stress about the regular necessity of recuperation when you’re a sickly child. Especially when said recuperation can involve tea and Joss Whedon.

*I have just spent ten minutes looking for a good definition of the social model online, in order to illustrate this concept for those of my readers who are not aware of it (all two of them). I could quote an ‘original’ definition, but there are at least two different versions, and I can’t choose between them. All the online definitions I can find are ridiculously wordy, when it’s really a very simple concept. A prize** for anyone who can comment with a good link that explains the social model in less than 100 words. Or who can do that themselves.

**The prize is metaphorical. Sorry.