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?

 

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.

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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.

Fighting to Protect University Mental Health/Counselling Services

I have an article up at the PhDisabled blog, about the media debate currently going over student mental health services in the UK and how they are overstretched and underfunded.

Disabled PhD students are dealing with a lot at the moment. Apart from the ongoing academic disablism that we always face (see the #academicableism feed for many, many examples), there are specific situations dragging us down during this age of austerity. Student Finance England is finding ways to delay and turn down students’ applications for Disabled Students’ Allowance. (Anecdotal evidence includes my own fight to get it back – evidence of my disability that was always accepted in the past, has this year been refused. Talking to others, it seems that I’m absolutely not the only one.) Tuition fees are rising, which further excludes already-excluded disabled students, since disabled people are among the poorest people in society and are only getting poorer under the current government regime. And now there’s a crisis in the funding of mental health and counselling services based in universities.

The protection of our services at universities is a priority in these days of increasing exclusion – especially mental health/counselling services. Not all students with mental health problems would consider themselves disabled, but many would. As I say in the article, UCAS evidence suggests that increasing numbers of people with long-term mental health problems are applying to university in recent years. Meanwhile, non-disabled and disabled students alike deal with the mental health difficulties that can arise from stress at university. And disabled students face a whole lot of stress.

That’s why I’m arguing here that we need to talk about mental health services at universities and how they are under-funded. Unlike some university representatives, who apparently would rather we didn’t.

Cross-posted to Uncovering the Roof