Many people think autism is a superpower and if it makes them feel better to say that to themselves I wouldn’t in any way stop them. But autism is also a disability as defined in legislation, which is important because it provides certain protections. But many autistic people don’t think of themselves as “disabled” – they prefer to say they are different, or have a “different operating system” or similar. I use those phrases myself but I do consider myself disabled. Why? Well first of all, “disabled” isn’t a dirty word so there’s no reason to try and avoid saying that I am it.
Being autistic is part of who I am – it always has been and always will be. I wouldn’t stop being autistic if I could – I wouldn’t be me anymore. Well, let’s qualify that; the times when I would get rid of my autism are the times when I’d rather not be me anymore, and those are not good times. But if autism is a big part of me, how can I possibly tell whether it’s a good thing (“superpower”) or a bad thing (“disability”)? And actually, why on earth would I want to use emotionally-loaded “good” and “bad” words about something that is simply how I am?
Being a good civil servant I shall start with the facts and the legal position. The Equality Act 2010 says you’re disabled in law if you have “a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.” That’s legally nice and clear but it doesn’t help with the value judgements. The words “impairment” and “negative effect” definitely sound like bad things, so in saying I’m disabled then I’m saying that my autism is an impairment which doesn’t sit right if I just consider myself to be “different”. But I will still have the legal protections, thank you.
Unpicking a bit further, it’s necessary to think about what we actually mean by a “disability”. There are different ways of talking about disability that get banded around nowadays and while I’m no expert in this area it might help if I say what they are.
The Medical Model of disability looks as what is wrong with a person with a view to curing or correcting it. If you have a broken leg it would make sense to approach it with a medical model of your impairment – you would want to get it cured, rather than embrace it as part of your identity. For disabilities that are lifelong, and particularly those that are deeply linked to someone’s identity, it’s not a helpful model though. If autism is a large part of what makes me, me, then considering it as something wrong with me that needs to be cured isn’t helpful. Taken to an extreme, the medical model of disability applied to autism would seek to prevent autism existing, which would mean that people like me shouldn’t exist. So pardon me for existing.
The Social Model of disability is the best known alternative model. Instead of thinking about what’s wrong with a person’s body, it looks at how the way our society works and how that impairs things for the person. An easily grasped example would be to say that if you use a wheelchair and you can’t reach the kitchen cupboards, it’s not your fault for being at the wrong height, it’s the fault of a society that puts kitchen cupboards in the wrong place for you. If everyone used a wheelchair, all kitchen cupboards would be within reach and you wouldn’t be disabled as regards kitchen cupboards. This is a much more affirming model than the medical model, but it also has it’s issues. For example, some people just do have disabilities that make their lives nasty – if you are in constant pain, that’s not something that societal changes can fix.
The approach to disability that I most like is the Interactional model championed by the sociologist Tom Shakespeare. I can’t explain it fully – read Tom Shakespeare’s writings – but as I have it in my own mind it’s a kind of combination of medical and social models. In my own case, most of the way autism disables me is the result of society. I find it disabling that I have to communicate in a way that most people do, which doesn’t come naturally to me. Almost all of the problems I have from autism would go away if I were on my own, or in a society that was build for autistics. However, I also have sensory hypersensitivity which would still be a problem. Much of the issues from that too come from society – crowded trains, loud noises, strong tastes – but some come from just living on planet Earth. I find the light of the sun painfully bright – there’s no way that changes to society would stop that – I am always going to need sunglasses. So I am disabled largely as a result of how I fit in society, but also somewhat by the way my brain is wired, and that second is not something that can be changed.
Using those definitions, is it helpful to define autism as a disability? Under the medical model, mostly no, it isn’t. I don’t want to be cured thank you, and nor do I want a key part of my identity taken away. Under the social model, mostly yes, it is. I would like society to be a lot more welcoming to autistic people and then a lot of my problems would go away. But only the interactional model offers the sort of nuance that expresses my real lived experience. There is nothing (much) inherently wrong with me – I am autistic, I am different, and I am OK. But in our society, and living on our planet, I have some problems. Those problems are not my fault and making value judgements will not help with them. I just need to do the best I can, as do we all.
If you’re autistic, there’s nothing wrong with defining yourself as disabled or not-disabled as you prefer. But if you’re determined you’re not-disabled because you regard being disabled as a bad thing, then you might just want to check your prejudice.
Autistic Civil Servant 