Scuba diving in a wheelchair? Come on, I know you want to....

Last time in my blog I talked about the 2 models of disability - the social model and the medical model. You can read that post here, but to recap quickly basically the medical model says that disability is caused by the limitations and symptoms of their physical conditions, for example, if someone is in a wheelchair and is unable to go up a flight of stairs it is seen as a consequence of their disability. The response to this is to try and normalise the person as much as possible, through operations, medication, hearing aids or cochlear implants etc.

The social model on the other hand believes that disability, is at least in part, caused by the world not adapting to suit their needs; it is the steps that are seen as the problem, and the answer is to make a world in which not being able to use your legs isn't disabling or limiting. 

The answer to deafness would no longer be to make everyone have cochlear implants, but to raise awareness of what deaf people need, and to have more users of sign language so their deafness is no longer a problem for them.

But it is not only that physical world that needs to change to stop creating disability, it is also he world inside people's heads. It's about changing the perception of disability, changing attitudes and emotional responses. 

This is all very abstract, let's bring it down to individuals, one individual: Sue Austin. 

Following an illness which profoundly affected her mobility, Sue finally got an electric wheelchair. For her the experience was amazing:

"it was a tremendous new freedom. I'd seen my life slip away and become restricted. It was like having an enormous new toy. I could whiz around and feel the wind in my face again. Just being out on the street was exhilarating ... But even though I had this newfound joy and freedom, people's reaction completely changed towards me. It was as if they couldn't see me anymore, as if an invisibility cloak had descended. They seemed to see me in terms of their assumptions of what it must be like to be in a wheelchair. When I asked people their associations with the wheelchair, they used words like "limitation," "fear," "pity" and "restriction."

Until in the end:

"I realized I'd internalized these responses and it had changed who I was on a core level. A part of me had become alienated from myself. I was seeing myself not from my perspective, but vividly and continuously from the perspective of other people's responses to me"

And so she set about challenging these perceptions, by creating beautiful works of art with her electric wheelchair. And then she did something extraordinary: following her decreased mobility she began scuba-diving, and found in it a freedom of movement that only her electric wheelchair had been able to offer. But people's reactions to that were so different, scuba diving is seen as an adventurous, exciting, the wheelchair as limiting, fearful. So she made a scuba diving wheelchair! When she showed the film of it to people, their attitudes changed to joy, and even envy cause it looked just so damned cool. She had reframed their concept of wheelchairs by putting them into an entirely different context.

"because in that moment of them seeing an object they have no frame of reference for, or so transcends the frames of reference they have with the wheelchair, they have to think in a completely new way. And I think that moment of completely new thought perhaps creates a freedom that spreads to the rest of other people's lives. For me, this means that they're seeing the value of difference, the joy it brings when instead of focusing on loss or limitation, we see and discover the power and joy of seeing the world from exciting new perspectives. For me, the wheelchair becomes a vehicle for transformation"

I've had a similar experience to Sue: when I eventually bought a wheelchair, the freedom it brought me was amazing. But peoples negative reactions to  in the end made me feel negatively about it myself, and about my disability in general.

We need to create a new narrative of disability. We need artists (like Sue Austin) writers, and filmmakers to create this alternative narrative and smash preconceptions. But how do we do that? Where does the old narrative come from? What should the new narrative be? HI think one of the best ways of answering for these questions comes from looking at other minority groups whose narrative has changed dramatically which I'll be looking at in my next post. 

http://www.ted.com/talks/sue_austin_deep_sea_diving_in_a_wheelchai

http://www.trishwheatley.co.uk/suehome.html

Medical vs Social Model of Disability

My apologies if this is a bit higgledy-piggledy, the thing is that I am only fully thinking about bits of what I’ve said as I’ve been writing. I always thought I was the expert in talking about disability, that I knew everything I need to know about it, and to know what I thought about it. But as I write I’m gaining new insight.

So let me put this talk of films in context of some of the theory of disability that I’m starting to learn. This states that disability can be split in two:

There is the medical model of disabilty, which says that a person’s disability is caused by unfixable limitations such as pain, illness, and such as not being able to move your hands or legs. In the medical model the strategy is trying to “normalise” someone so that they can fit into mainstream society.

Then there is the social model, which says that disability exists because of how our societies are structured. This can mean practical things such as access, making adjustments so that disabled people can be part of society, and allowing people the financial and practical support that means you can circumvent much of the limitations of their disability, e.g. ramps for wheelchair users, sufficient care to meet needs and have a good quality of life, or making sure that Braille forms of books exist.

It was useful to me learning these models, because it made me able to put this into categories in my head what parts of my disability are unfixable, and which are to do with the way that society responds to people who might need extra help. And in talking about housing and care in my previous posts, I have been, I realise, talking about the social model of disability, of making sure that individuals have an equal quality of life and freedom.

And I realise that the whole question is to do with normalisation over acceptance. It is seen as easier to change someone so they can fit in with society around them, then it is to allow people differing needs and differing levels of help. Or to put it another way it is society moving from being homogenous to heterogeneous. It’s back to the diversity thing. And in a way it’s back to the sexuality thing, where instead of being encouraged, people’s sexualities were repressed, and gay and lesbian people were made to normalise by society. Looking back it seems ridiculous, barbaric and nigh on impossible to require this sort of conformity, and I wonder if in 50 years time if society will look back on how people with disabilities with the same horror and disbelief.

Perhaps the best place to look at the social versus medical theory of disability is in the deaf community. The medical establishment tends to see deafness as something that should be fixed, with hearing aids, and cochlear implants, with teaching lipreading and cued speech so that deaf people can learn to talk and hear. They want to normalise their patients so they can fit in with the hearing world. And it’s true that being deaf does place limitations for access to certain things, but many Deaf people feel that they don’t have a disability, they just have a minority language, British sign language, and what they want is the more people to speak it. When Deaf people are together they don’t have a disability, when in the hearing world the disability is created by the lack of people who speak their language.

I spent a lot of time in the Deaf community, when I was at university the years after that, I studied sign language and worked with Deaf people, and I moved in myself from a place of seeing deafness is a bad thing, and not understanding why people would not correct their deafness if they could, to seeing the beauty of their language, and of their culture, just as I would of any other minority.

Learning all this has not made me want to stop having all my illnesses, but it’s made me think that if I must have them, how much of the disability is actually created rather than inherently there. And I think for me it’s about 60:40. That means that there’s about 40% of my life that could be changed to improve it. To say to society: you are creating my disability, moves the responsibility away from me, puts the onus back on the outside world. And for those who say “but that’s too expensive” I repeat what I said in my earlier post: not my fucking problem – go sort it out yourselves. Make your world one I can live in.

I said this to the straight world and it made space for me (eventually), and now I ask the non-disabled world to do the same.

Being in minorities

Last month I went to Gay Pride. There is something wonderful about it, something joyous. I never used to understand why people felt the need to go to Pride - I was never proud of my sexuality, it was something that was just a part of me like having 10 toes or blonde hair. I understood why it was important for those who have experienced negative reactions from other people needed to be proud, and that that pride was hard-won, and acceptance and that self-respect hard-won. But I've never had any real negative experience because of my sexuality, not from anyone who really mattered to me, and generally not from the outside world. I understand that I'm very lucky in this, and that people whose family or friends all peers have turned against them because of their sexuality, and also that not looking like a “conventional" lesbian protected me from negativity from the wider society.

But then a couple of years ago I went for the 1st time and I got the experience of being with 1000 other people who reflected some part of yourself which you did not find in mainstream society. Everywhere there were mirrors of myself, everywhere experiences that reflected my own. And not just in sexuality, but in gender too, there were girls dressed as boys, boys dressed as girls, masculine women, feminine men and everything in between. It was a celebration of diversity, of not straightness, not polarised gender, not homogeny. I didn't realise how much I needed that reflection in my life or anticipated how much it affected me that suddenly I went from being in a minority, to being in a majority.

And as a woman I am constantly bombarded with media telling me how I should look or dress, and being surrounded by women whose conception of femininity and attractiveness is so different from my own, and the conception of masculinity which is so far from what is I feel it should be. I live in a binary world of masculine and feminine, not a spectrum. Sexuality is a spectrum. Gender is a spectrum. Diversity is innate within the human species, and yet that is often not reflected in the mainstream world and in media. One of my favourite poems is by Louis MacNeice and it's called Snow, and my favourite verse this one:

World is crazier and more of it than we think,
Incorrigibly plural. I peel and portion
A tangerine and spit the pips and feel
The drunkenness of things being various

It is for similar reasons that I enjoy the Respect Festival in Exeter that I also went to a recently, there is a variety in how people look, how people dress, how people express masculinity or femininity. There is plurality in short. There are people who can talk for much longer and more eloquently about what it means to be a woman, what it means to see gender or sexuality as non-binary, but in all these things I am a minority, and I am not reflected in the mainstream world - whether in films or on TV, in newspapers and magazines, in advertising, in culture - as well as in the real world -  in public, in pubs in shops.

When a young child is growing up, one of the 1st ways they learn who they are, learn that they are separate from the world is when they see themselves in the mirror, in the same way as we grow older our self concept is created from the reflection we find of it in society, the reflection we find in others. But it is, as one feminist said in the documentary Miss Representation (about how girls self-concept is being formed by the media), “you can't be what you see". No reflection = no ability to create accurate concept.

There is a long way to go to creating positive reflections of gender and sexuality for both men and women, but things like Pride play a big role, even if it's just a one-day, of what it's like to find who you are in the world, to see that positively and joyously reflected.  But the minority that is I find it hardest to be in, and in which I feel the most invisible, is in being disabled, and this post has been in some ways a pre-ample to talking about that. For in great irony Louis MacNeice, who wanted the world “incorrigibly plural" described the ideal male poet as “able-bodied", showing a level of Disablism that is still prevalent in our society.