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Blog - Deborah Caulfield

What if you can’t run and there’s nowhere to hide from yourself?

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Three questions to get you started:

With which of these statements do you agree or disagree?

  1. It’s best to keep quiet about your mental health problem because it makes people think bad things about you.
  2. You can’t be both physically disabled and have mental health issues – you have to choose one or the other.
  3. It goes against the social model of disability for disabled people to say they have mental health issues connected with their physical impairments.

Thanks. Now, please consider this: It is inconceivable – impossible – to live all or most of your life since early childhood, with physical disability, without some kind of psychological and emotional trauma taking place.

Hearsay or heresy?

The key proponents and exponents of the social model of disability have, almost exclusively, been people who acquired their impairment in adulthood. And/or they have been serious academics. And academics are heavily into research and teaching.

The philosophy and politics of independent living focus on being in control of your day-to-day life, making choices and exercising human and civil rights. Generally speaking, these are mere theories. In a sense they’re fantasies and dreams that can only come true if you have options from which to choose, and the resources (money) to exercise your choices and rights.

Whereas the reality of most of our lives is that we get on with it, make the best of what we’re born with. And since we were born with (or without) it, it’s all we know. We’ve nothing else, no other kind of life, against which to compare and contrast our own.

It’s a case of Laetus Sorte Mea. Or not.

Put simply, sooner or later, as a disabled person you launch yourself into the land of independent living with barely any preparation beyond (if you’re lucky) the theory of choice and control. You have to hit the ground running.

Or in my case, hit the ground scared and stay there for a year hardly without moving. I didn’t even need personal assistance.

Then came the social model of disability…

The ‘movement’ has not been good at translating concepts and ideas into concrete, measurable things to do. For example, what does it look like when someone is living independently? What will they be doing, not doing? What goes on? How does it happen? Crucially, what if it doesn’t?

How do you transition from kid to adult if your mum’s still wiping your bum when you’re 16 years old? Ok, yes, here and there are some good schemes for young disabled people to gain experience of personal assistance. But these are the exception.

No indeed. The blood and the piss, and the grit and the grime of everyday life when you need help to do the basics, are not much delved into by academics. It’s not their business, not their role. Yet it’s academics who dominate the discourse, as they would say.

In other words, pretty much all we hear, read or know about independent living comes from the philosophy/theory side of things, not the sharp-end, practical side.

It’s in books. Read all about it.

But dare to tweet about the slog, bore and chore of dealing with personal assistants, or using a wheelchair, on a daily basis and you’re likely to get a heap of abuse thrown at you for bringing the cause into disrepute.

Is it a case of ‘put up and shut up’?

Until recently I believed that my depression was the result of not trying hard enough to be happy. It was a sign of weakness, laziness or not having come to terms properly with physical impairment and chronic pain. I was the classic crip-with-a-chip. Sounds funny but it’s nothing to laugh at.

So, what if knowing your rights doesn’t cut it? What if seeing yourself as an oppressed individual, part of a marginalised group facing societal barriers and battling for equality, doesn’t do the trick?

What if, after all the protesting, the barriers are still there, rock solid and in the sodding way?

What if some of said barriers are in your head? Woah! Controversial!

What if, despite the theory and having won the intellectual arguments, you can’t do what you want, when you want and how you want? What then? Is that the end of the matter? You reflect on your situation, intellectualise a bit (and why not) and you come to the conclusion that you’re simply being denied your human rights.

Is this what you do?

And another thing: Hating the way you look beneath the clothes that don’t fit (because your body doesn’t conform to society’s definition of normal) is a sure sign that your consciousness has not been properly raised. You’re self-obsessing and self-oppressing; stop it at once.

Or else what?

So you read a few more articles and books, do a course or two, or three, read some more books. It’s great stuff. Every word makes sense. You believe because it’s all true. Society is at fault. It’s built by non-disabled people for non-disabled people. It’s all so bloody wrong.

Then what?

I’ll tell you what. You feel shit, that’s what. And when you’re done with feeling shit, you feel shit some more.

Then you go down the doctors and ask for something to take away the mental pain of feeling shit about something you can’t change and wouldn’t necessarily wish to change. You just wish you could get rid of the shit of feeling shit.

Speaking of feeling shit …

I behaved oddly at college. After 16 years in institutions, I had a few issues, right? Living in the real world, being somewhere other than Chailey Heritage was what I dreamed about. It had never happened so it never could. This is what I reasoned, insofar as I thought about it at all.

Literally, life beyond Chailey was unimaginable. It could not be imagined therefore it could not happen. I hated it inside that place because it seemed like prison. But I feared the outside more.

Then one day, there I was, on the outside. It was another world. I’d been kicked out of the cocoon and landed on the moon.

I had absolutely no idea what to do.

Greetings! I look weird but I mean you no harm…

It wasn’t just that I felt different, I was not fully human. I felt awkward and ugly. I felt alien. I WAS alien.

To some extent I still feel weird. I know I look weird. Every day I force myself to include myself, yet I know that on a profound level I don’t belong.

I am not one of you. I am other. This ‘other’ has no definition beyond total otherness. I am a creature from another time, another dimension.

I am alien.

picture about fear

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Very well said. I find the social model of disability highly problematic and reductive and something that cherry picks forms of disability and marginalises others.

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