Friday, November 03, 2006

The Disability Hierarchy

Feeling a little brighter now, thank you. Cogs in motion, but could probably do with a little mental WD40.

I wrote a post last Friday about the disability hierarchy; the way in which not only are disabled people subject to discriminatory treatment as a group, but that some disabled people are treated with far more discrimination than others. I was feeling very foggy that day and decided that being a sensitive and complex subject, I should take it down and sit on it until I was feeling brighter. I've sat on it for a week and edited it some, but if you have read something very similar to this before, my apologies. I also hope to goodness that it makes sense.

Since last week, Blue at the Gimp Parade has posted a bit about this, describing some of the recent events that contributed to my wanting to post on this.

Blue attempts to separate out the issue of legitimacy out from the other ways in which we are rated against one another. I don’t think this is possible. I feel the main issue, as with all hierarchies that are applied to groups who experience discrimination, is to do with manageability. Which of this group, who people feel uncomfortable about, are more or less manageable.

For other groups, the issue of manageability is usually about conformity to a type. Historically, we have liked gay men who conform to stereotype; camp entertainers, eccentrics. Only when they want to behave like 'normal' people have we felt threatened; we can’t easily identify them, you see. Conversely, our society positively revels in depictions of lesbianism, so long as the women defy the stereotype to look and behave like the epitome of heterosexual femininity. Preferably without any clothes on.

In the context of disability, manageability is tied up primarily with worthiness, of which legitimacy is only part. After all, disabled people are such a diverse group of people that the entire existence of any hierarchy rests with the medical or charity model of disability. If disability is a purely an issue of medical dysfunction and need, if we are seen as people with disabilities* and the problems belong to us as individuals, then the individual is fair game to be assessed for worthiness by society. As we are not a society of doctors, medical fact and functional impairment don’t have a great deal of bearing on the assessments we make.

Our contradictory attitudes towards mental health are perhaps the best illustration of this. On the one hand, we doubt the legitimacy of mental ill health; those people are lazy or lack moral fibre and should pull themselves together. That mental health can stop a person being able to work, to care for themselves to get about without help - that mental health can cause as severe a degree of functional impairment as any physical condition there is - well, we don't buy it. On the other hand, there is great nervousness about people with mental ill health, especially combined with other social factors; in the UK, black men are six times more likely to be sectioned (forcibly detained) under the Mental Health Act than anyone else. People with severe mental ill health may be considered legit, but they are considered unmanageable. Thus people with mental ill health are often completely excluded from discussions about disability.

A more subtle example involves weight. Lots of disabled people are overweight for the obvious reason that the less exercise you get and the less choices you have about diet, the heavier you are likely to be. However, being noticeably tubby automatically calls legitimacy into question because we associate weight with laziness; it’s not that you can’t fulfil this task, you just can’t be arsed. Even where impairments are acknowledged, because weight is something we can see, because we understand weight as an effect of 'gluttony' and one that effects health, we are likely to assume that at least part of your ‘disability’ is self-inflicted. And in any case, weight also makes a person look rather comfortable; we like our people with disabilities to look in need.

Conversely, we don’t like them to look too bad. The recent controversy over Michael J. Fox’s television appearance strikes me not about whether he purposely failed to minimise the effects of his condition, but the fact that he allowed himself to be seen shaking and with slurred speech. Such visibility makes us uncomfortable. Speech impairments and other communication issues make us uncomfortable. Dribbling, sudden movements and deviance from social protocols make us uncomfortable. This has nothing to do with legitimacy; it’s just not cute, it’s not manageable.

For some reason, I make people feel uncomfortable when I use a manual wheelchair. My arms being as useful as my legs, I cannot self-propel. So in situations where I need a wheelchair but cannot transport or hire a power-chair, I need to be pushed. Whilst in other circumstances, being a wheelchair-user affords me immense social privilege above the other 95% of disabled people who are not wheelchair-users**, being unable to take responsibility for my own movement sends some sort of message which means that folks are much less likely to make eye-contact or to speak to me directly. This effect is compounded if my pusher is the right age to be my parent – I guess people must wonder if I couldn’t have been shrunk for their convenience.

I really could go on with examples of the subtle and not-so-subtle ways these judgements are made, all of the time, and sometimes by disabled people themselves (I recently read an article where someone with physical impairments complained of being treated like a retard with leprosy - fantastic!).

If disability is seen as a social experience, then people are qualified not by the degree of dysfunction of by the palatability of their medical diagnoses, but by their social and political experiences as people who happen to have impairments of one type of another. No person with dyslexia could compete with someone with spinal cord injury on sheer pathos, but there are contexts in which a person with dyslexia is more disabled than a person with SCI. As a wheelchair-user, there are many instances in which I am far less disabled than someone who is able to walk further than I am but with pain or other difficulty.

Since this definition of disability varies massively according to context, it is pretty much impossible to say who is more or less disabled – although certainly some of us are more often and more profoundly disabled than others. Personally, I have a moderate degree of impairment, but since I hardly ever go out, I am not nearly as disabled as a lot of people with relatively minor impairments who have to tackle transport, the workplace, colleagues, shops and other public buildings on a daily basis.

The very thing that disabled people are fighting against is being judged according to impairment as opposed to the content of our character. Any kind of hierarchy, any speculation about authenticity of an individual disabled person goes directly against that.

* I don't mean to suggest that those who adopt people first language have such a view of disabled people, but the phrase people with disabilites inevitably defines disability as a problem with the individual. See also A brief guide to the language of disability.

** This is naturally a controversial statistic according to how one defines the wheelchair-user and how one defines the disabled person. 4 or 5% of disabled people being wheelchair-users were the most common stats I found - the highest was 8%, the lowest 3%.


Anonymous said...

There's so much categorization going on.

People feel more comfortable with "boxes" they fit in, I suppose.

The vertical hirearchy that you discuss

The "I don't want to identify as a person with impairments" crowd.

Those who focus on acceptance and access as the best way to un-impair, peoples lives.

Those who search for cures.

Right now, it just makes my head hurt

Mary said...

Head go pop.

1 relevant comment to make, and that is that being one of the many people with a fluctuating level of impairment rather than a very definite line where my limitations are, I never quite know where I fit in.

I own a mobility scooter, and sometimes I am so *well* that I don't need to use it and other times I am so *ill* that I cannot use it safely.

There's the good old Cup Of Tea test, which I believe to be one of the official "measuring sticks" for level of disability... well, on a good day I can make a cup of tea and with care I might be able to carry it while standing upright too, on a worse day I can also make a cup of tea but amongst other issues I'll take a lot longer and have false starts (eg get a cup, add a teabag, then add two spoons of coffee rather than sugar).

How disabled am I? Buggered if I know. Buggered if anyone else knows.

Anonymous said...

The level of disability goes up in direct proportion to the governments definition of disability needed to receive benefits. Take a look at the statistics, and you will see an ever increasing disability community. As sad as it is, the vast majority of those claiming disability could just as easily be seen as normal.
There are all types of disability, but drastic, intense, oversight is needed to weed out the freeloaders.
I wrote a blog today on Chronic Fatigue Syndrome, and how or gov has now designated it as a disability. Where does it end?

The Goldfish said...

Mary and Al,

I responded to AL's comment about CFS on his own blog and would ask anyone who feels the need to comment on that to go there. Anyway, I am afraid you both missed the point in spectacularly different ways. :-)

The whole point is that it is impossible to define any level of disability if we talk about it in purely functional terms. Take CFS and arthritis for example. Let's have someone with CFS who does not have any of the muscle or joint pain characteristic of that condition.

Person with CFS may be less disabled than person with arthritis because they have no mobility impairment.

However, person with arthritis may be less disabled than person with CFS because they have no problem with concentration, communication, short term memory and other cognitive function.

Who is more disabled? It is impossible to say. That's my point.

Mary said...

"Who is more disabled? It is impossible to say. That's my point."

Yes, I agree with you.

(brain still go pop but not as much)

Katie said...

Ho Hum

Maybe we should all compete. I can work out what age children pop music is aimed at by whether or not I can do the dance routine.

S Club 7 = Really Basic Dancing = Aimed at 4 year olds = Suitable for my level of disability.

So perhaps some kind of system based on disco-dancing?

Anonymous said...

I appreciate your reflection on mental illness as disability. I came to interest in disability because my two sons have autism. Once I arrived I realized that the mental illness I have lived with all my adult life is also a disability. It was no surprise to figure out it caused a severe degree of functional impairment at times. The surprise was to find that it puts me in a place of sharing significant common ground with persons who have other disabilities, not the least of which is dealing with people's discriminatory attitudes. I am appreciating the chance to learn from others about living with disability.

Anonymous said...

I have post polio and sometimes I am in power or manual chair and sometimes I drive myself to a street corner, plunk down a stool and taxi amp and busk for an hour, sometimes I walk a short distance to a store and back to the car - no one can tell what I am up to so I am confusing the hell out of public perception. I enjoy that since sometimes people look like they want to pat me on the head or buy a pencil. I always have my disability - sometimes I have the visible signs and sometimes not - the not is in my mind because anyone seeing me walk knows that John Cleese invented his silly walk after he saw me.