Monday, 28 April 2014

The Disease Model

flask made what I feel is a very good point in a comment on last week's post on what differences we call disorders and what differences we do not.  It's a point that leads me into a larger point that I was going to make when I got around to it, and so I am getting around to it.

In that post, I focused on the idea of accepting differences without feeling the need to label them as disorders.  While I acknowledged in passing that these differences can be very problematic and even traumatic to people who have them, I didn't talk about the role that the concept of a disorder has in allowing people to seek help.

Transgender people may experience their physical sex as a disorder.  Severely autistic people may sometimes not communicate their experiences, but if they are engaging in self-harming behaviours, it may seem fair to describe their condition as a disorder.

The reason that a label of an illness or a disorder may be useful is that it allows a person to seek treatment.  We could agree that "curing" autism is a bad suggestion but offering treatments for autism that help people fell better and cope better is a good thing.

I think that's a very good point made from within our current model.  Our current model is one where there is the normal state and there is disease.  A transgender person can seek treatment - a positive treatment that acknowledges their physical sex rather than their subconscious one as the problem - because the aren't normal and are therefore diseased or disordered.  A parent with a non-communicative autistic child can seek treatment because their child is not normal and is therefore diseased or disordered.

Not-normal is disease.  Diseases can be treated or cured.

My province has some pretty significant pieces of legislation that are aimed at making the province more accessible to people with disabilities.  It looks at disabilities a little differently.  Disabilities are not problems, the problem is barriers.  Barriers make places or services inaccessible to people with disabilities.  For example, a very narrow hall is a barrier that prevents access to a person with a large mobility device.

Not-normal is a disability.  Barriers may prevent access to people with disabilities.

Under this scheme, the talk changes from "Alph couldn't get to the meeting because he's in a wheelchair," to "Alph couldn't get to the meeting because there was no accessible entrance."

The reason mobility disabilities always find themselves in example like this is because they are easy to conceptualize.  With mental illness, and mental differences, we find it harder to think that way.

We have some good hints, though.  I could say, "Mab hated going to the bathroom because she was transgender" or I could say, "Mab hated going to the bathroom because the bathrooms were not accessible to trans girls."  A bathroom where you can be harassed, threatened or arrested because you have different organs than the other people in the bathroom think you are supposed to is an inaccessible one.

I could say, "Tii sits in the corner and rocks back and forth because Tii is autistic," or I could say, "Tii sits in the corner and rocks back and forth because... Tii's family is not accessible? our culture is not accessible?  the world is not accessible?"  It gets tough.  And, of course, we have to ask ourselves if sitting in the corner and rocking back and forth is even a problem.  Is it that Tii "can't get to the meeting" - Tii would like to be functioning at a higher level but is being prevented from doing so by barriers - or that Tii "hates using the bathroom" - the barrier is other people's reactions to what Tii is doing and Tii would be fine if people just stopped passing judgement.

And what we ignore is that a lot more situations are tough than we'd like.  That same legislation that aims to make Ontario more accessible for people with disabilities has ways of defining disabilities and how accommodations must be given.  Your employer is going to have to try to make reasonable accommodations for who-you-are only if who-you-are is a thing that can be recognized by a doctor or a psychologist.  If you can get a professional to say that you need a dark place to work then you might be able to get reassigned from your open concept cubicle to a broom closet, but if you are just one of the many people who has trouble concentrating in that open environment, you get jack.

This is what is really comes down to.  Rules that say your employer has to make reasonable accommodations if you can prove you need them.  Rules that say places you visit as a customer must make reasonable accommodations as well.  Rules that help to turn people from charity cases into workers.  But that is still the axis that we move along.  It isn't really normal vs. disease or normal vs. disability, it is worker vs. charity case.  Near the beginning of those post I said:
Severely autistic people may sometimes not communicate their experiences, but if they are engaging in self-harming behaviours, it may seem fair to describe their condition as a disorder.
But my not-really-hidden meaning was this: Severely autistic people may sometimes not communicate their experiences but if it seems like they won't be able to get a job, then we do describe their condition as a disorder.

Those without disabilities are workers; those with disabilities that can be accommodated are workers-but; those with disabilities that are too expensive to accommodate are charity cases.  But those who have issues that aren't called a disability; issues that might be called a disability if only they had received more research funding - if some celebrity's child was born with the same problem - are slackers, losers, and rejects.

There is a common perception that natural slackers, losers and rejects make up the bulk of humanity, and that if we gave them an in to become charity cases then society would collapse, so we have to force them to be workers on pain of death.  The reality is that almost no one wants to be a charity case, and that we could easily float those that really do in our current situation.

Disability-and-accessibility is an improvement on disease-and-cure in that people are treated better and suffer less.  But both are trying to define something against normality.  If I were making the next version of the DSM, actually believing in that notion of normality that we define disability and disease against would be the first mental illness in the book.
If you have negative feelings about the actions I am taking, that is part of what I am protesting against. I am protesting the values you use to determine how you feel about and interact with the world.
When I said I wanted to congratulate John Campbell I knew that people wouldn't understand the worker vs. charity case problem - I don't think I understood what I was talking about at the time.  He was a worker, and by our culture's estimation he wants to become a charity case without first justifying himself based on a diagnosed intractable disability.  That makes him a loser, slacker or reject.

What he really did was move orthogonally.  No longer a worker, but looking for another alternative.  He wasn't asking for charity when he said he wanted people to support him and then someone else.  He was talking about a different way that things could be.

But he didn't really move orthogonally, he didn't actually escape.  He had a breakdown and probably made his whole situation worse rather than better.  He is without access to medication that was allowing him to function at the level he was previously functioning at.  He stopped paying rent so may end up homeless.

For many years I thought I would end up homeless.  Sometimes I considered it as an option.  At one point I had a bag packed and a bus ticket to a city with a significantly more liveable climate.  I didn't have a note written because I didn't intend to leave one.  I feel like it could have gone either way.

There are those of us for whom the worker vs. charity case axis is itself a barrier, and for us there is no hope.


  1. hard truth: i live on disability payments.

    i wish i were well enough to hold a job.

    it's not because i feel like a slacker or a loser without one, but because i feel work itself is meaningful.

    i also believe in art for art's sake.

    there's a fundamental fierce joy in doing work that puts food on your own table.

    not work for fear of homelessness, not work for desire to fit in, or avoid punishment, but work because work itself means something and work because supporting yourself is a stunning and glorious thing.

    it's a crappy culture where we grind workers down and exploit them for maximum profit, but that's a different problem i think than the idea of why work matters.

    the way i feel about and interact with the world is that i want to produce something that makes a difference to someone, and is worthwhile to me and to others. i want to be of use, to contribute something to the general pile of resources shared by my community.

    i FEEL good when i have something to offer. i like it when i can contribute nontransactionally and receive nontransactionally, but trade is a handy way to condense and store desirable items or services.

    i can't feed myself with my awesome songwriting talent. if somebody pays me because they enjoyed my work, i CAN buy groceries with that money. i don't think that's a bad world view.

    i mean, i can survive pretty well on foods i can forage, but i like manufactured goods and the products of other people's labor. i value other people's labor. i value their time, their knowledge, their resources.

    is worker vs. charity case necessarily an axis?

  2. I for one have never felt a fundamental joy at any of the jobs I've held.