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.