Saturday, November 2, 2019

But I don't feel disabled

Catsidhe (David Cameron Staples) posts But I don't feel disabled

(Self-)Advocacy is hard, because it doesn't feel, most of the time, like a disability.

That needs unpacking.

The advocacy work I'm trying to do has a lot of overlap with advocacy for wider disability inclusion and accessibility. If I'm successful, it's not just for the neurodiverse, it's for the vision impaired, the mobility impaired, the hearing impaired, everyone. It requires making common cause with them, and at least at the start, advocating on their collective behalf (because somebody has to, and if anyone else is, no-one seems to know about it). But I don't feel like I belong in the same category as they do.

Because what is "disability"? It seems that every attempt at defining it comes out different, and the only commonality is that it's like "obscenity": you know it when you see it.

At the core, it's a condition which results in a more or less permanent impairment in function. But that carries its own definitional problems. A family with achondroplasic dwarfism, in their own specially designed environment, might not notice any particular issue. Until they step outside into a world designed for "normal" people. Or, as the terminology is preferred, "typical" people, because we're talking about mathematical norms over populations. So the first battle is to define your population. If you had a modern environment designed for Maasai, and a !Kung family moved in, would they count as disabled because of their physical difficulties? Or vice versa?

Let's take it further: Dwarfism isn't just caused by achondroplasia, and there are so many possible causes, including just because, that the definition for dwarfism as regards being a disability is being 4'10" or less as a fully grown adult. But it's possible for treatments of conditions like achondroplasia mean that growth can be given a kick along. It's entirely possible to be a 5'5" dwarf. Are they still disabled?

Then there's where the line is drawn regarding severity: someone with a C5 spinal cord break is quadriplegic, and everyone would agree that they're disabled. Someone with an L4 break is paraplegic and also definitely disabled. Someone with a below the knee amputation is definitely disabled, even if, like Adam Hills, you wouldn't usually even know unless they told you. I just discovered that I have a slight congenital deformity of the talus bone in my ankle, which results in a twist in the foot, which results in chronic tendonitis and achilles tendon pain, and I've just got orthotics to address. Does that count as a disability?

Then there's where the line is drawn regarding permanence. The flu is clearly not a disability, no matter how much medical care you might need to live until it passes. The paralysis which results from polio clearly is a disability, as is the results of post-polio syndrome decades after any recovery. A broken leg is an injury, not a disability. The results of many broken bones can add up to a disability, such as for someone with osteogenesis imperfecta.

Where am I going with this? Executive summary: the concept of "disability" isn't that easy to define.

And I don't feel disabled. Usually.

How I am is how I've always been. In the normal course of events I am just how I am.


And then a tradesman comes out for an emergency visit, and it turns out I have absolutely no idea how to even ask how to pay him, or how much. Or when the conversations around my corner of the open plan office all talking over the top of each other penetrates even the music playing through noise cancelling headphones and I have to grit my teeth and fight the urge to stand up and scream at them to shut up.

But still, I have been diagnosed as on the Autism Spectrum. And the fact of that diagnosis means that, by definition, my symptoms add up to clinically significant impairments. I am, by definition, disabled. But putting myself into the same company as someone who uses a wheelchair or is blind, feels like a form of fraud.

And that's the same wedge that some Autism parents use to divide "high functioning" and "low functioning" autists. "You're not disabled, not like my child. You'll never understand what it's like for my child. Don't you dare to try to speak for my child."

Never mind that if you child can't tell you what it's like from their point of view, maybe people like me can. Never mind that there is no dividing line between "high" and "low" functioning, and that it's a grossly oversimplistic binary division of a complex and continually varying context dependent spread of capabilities and deficits. How about you let me advocate for me, and for people like me. How about you stop cutting my legs out from under me by shouting out my own private doubts, as if I hadn't been obsessing over them to an extent which practically of itself proves them false, as if I hadn't thought of any of them, as if the answer was as simply and easily expressed as the question.

Advocacy is by its definition the act of asking for help. Help for yourself and for others. (And that latter part means that there's more than my own wellbeing at stake if I stop.) And part of the very definition of the condition I'm asking for help with is that I don't know how to ask for help. Certainly not from the people I need to convince to provide it.

Christ, I can't even get some of them to answer my emails.

But I'm sure as hell not going to stop. Because, as I keep reminding myself, I'm doing this because I can, so that the next poor bastard doesn't have to.

It's just that I don't feel like I belong in the group for whom I'm doing it.

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