I've mentioned before that I work in disability support for students. In one particular case these past three months (and I have to be quite careful how I talk about it, because the assignment's ongoing and there's client confidentiality to protect), I've been working in disability support for a student studying special educational needs and disabilities. This has been rather mind-bending from my point of view, and I'm going to talk a bit about one of the ways in which it's bent my mind today.
As part of this assignment, I've attended a series of lectures about media representation of disabilities, during which it's been explained in some detail that 'the media', in general, handles disability very badly. Representations of disabled people as weak, pitiful, burdensome and so on are bad enough, but there's also something quite damaging about the 'disabled person triumphs over adversity to live a 'normal' life' kind of stories that we see quite often in local and some national news outlets.
The fundamental, underlying point of these lectures, as I've understood it, is that treating physiological and psychological impairments as illnesses to be cured or overcome is in itself discriminatory and prejudiced. It sets up an arbitrary standard of 'normality' according to which some people are 'deficient'.
And this is an entirely valid point. These kind of frameworks and attitudes, which are referred to as the 'medical model' of disability, are damaging and hurtful. We should be doing everything we can to overturn them in ourselves and in society generally. But there's another side to it which I'm much less comfortable with, and it's taken me a while to figure out why.
The idea has been floated in several of these lectures that impairments ('disabilities' is actually the wrong term, for reasons I'll get to in a minute) should be celebrated as a form of human diversity. The most extreme form of this was the suggestion that a disabled parent legitimately could or even should wish for a child who shared their disability. There's a complex debate in there, and there are rational arguments on both sides, but I have to admit that the first time the idea was mooted, I felt an immediate and visceral revulsion for it - not a rational argument, but that was my response. For that reason, I'll wait to get into that issue until I'm a bit more detached from it.
Let's stay with the broader theme for now instead. The key idea here is what's called the 'social model' of disability (proposed in the 1970s as a rebuke to the medical model), which says that, though physiological and psychological impairments are matters of undeniable fact, to regard them as disabilities is wrong. A disability occurs only when some action is socially established as normal despite the fact that some people are impaired in their ability to perform that action. So to be disabled is for society to declare you inadequate to some task, not anything inherent in you.
I have some minor semantic quibbles with the social model, but I think it's fundamentally sound, and a vast improvement on previous approaches. It puts the obligation for providing support to the impaired exactly where it belongs - on the society that otherwise pushes these people to the margins.
The social model lets us look at impairments from a much more appropriate perspective in the here and now. It tells us that we shouldn't let doctors and experts decide what disabled people want from life - instead, the experts should be treating disabled people as adults capable of making their own decisions. If this sounds absurd, it's no more than exactly what those of us without significant impairments expect when we go to the doctor.
If I go to a doctor to complain of the disruptive effect of my near-chronic rhinitis (yes, I've been to the doctor's several times for a runny nose. You don't get to object to this until you've listened to me rant for at least ten minutes about how unpleasant it can get), or to an optician to get glasses so that I can still see despite severe myopia, I don't expect them to start trying to organise my life for me. I want the quickest and simplest solutions that will allow me to live the life I want.
And, generally, I get it. Historically, this is absolutely not how disabilities have been treated by the medical establishment and society in general. Score more points for the social model.
The problem comes when we look ahead, to the technological advances we can expect over the coming century (not to mention some which are pretty much already here). I've touched on this issue before, but it's time to go at it more head-on, thanks to my new favourite word: Extropianism.
An extropian is someone who believes that an essential part of future human progress is taking control of our own evolution; rejecting the genetic lottery and modifying our bodies as we see fit. For purposes of this post, the aspect of extropianism I am interested in is the idea that we should never be happy with the way our bodies are. Bit of a contrast to the way we normally think about body modification, no?
I'm not saying we should all immediately go and get plastic surgery. This isn't about what our bodies look like; it's about what they can do. The idea of modifying your body for aesthetic purposes isn't completely without merit, but modifying it just to fit some arbitrary idea of how a person 'should' look is not justifiable.
The reason I like the word so much (apart from the fact that it's just a cool word) is that, quite without knowing it, I've been an extropian most of my philosophical life. I'm very much against the idea that we should bow to the dictates of nature when they get in our way.
I could be trite and argue at this point that to an extropian proponent of the social model of disability, we're all disabled and thus shouldn't be discriminating in any way against anyone else, but the actual thrust of my argument is a bit more individual and internal. Speaking to each of you as individuals, whatever the quirks of your body and its capabilities, I say that if your body stops you doing something you want to do, change it, or at least look forward to the day you can change it. Don't resign yourself to any limit on your abilities, and certainly don't celebrate it as a form of diversity.
I don't have anything that society would class as a disability, but I'm short-sighted, I have mild tinnitus, and I have chronic rhinitis which is a bigger disruption than the other two put together. Given the option, I'd be shot of all three in a second (though I admit I'd be very self-conscious without glasses). But also, given the choice, I'd like flight-capable wings and the ability to plug my brain directly into the internet. I fit all those choices into the same category.
My basic point is this: if you take it as a principle that you should celebrate and therefore maintain the physiological limits that birth puts on you, whatever those limits are, then you have to reject the whole possibility of extropian progress. The debate between the social and medical models of disability is a small but important sub-debate in the debate between extropianism and its opposite, which is sometimes called 'bioconservatism', but for our purposes we can simply call 'naturalism'. We have to be careful what principles the disability debate leads us towards.