Primary Decomposition

Life in intersections

Blogging against disablism

Blogging Against Disablism Day, May 1st 2009

It’s Blogging Against Disablism Day today, meaning I want to post about ableism (which is the term I’m used to) and how it’s affected my life.

Looking at my life, there is one person’s ableism that immediately comes to mind. Namely, my own.

It is odd, now, to think that this time last year I would not have taken part in this, would have stood on the sidelines and watched, maybe, but maybe clicked past not seeing any relevance for my own life – after all, I certainly wasn’t disabled, was I?

In the past year, I’ve come to terms with not just one, but two separate disabilities. These are not, mind you, recently acquired disabilities. Both of them have been with me for a long time – one probably since birth and which I recognised when I was eighteen, one since I was around five and which I recognised as soon as it appeared. This time last year, I had spent a lot of time thinking about them, writing about them, working out how they affected my life and trying to figure out ways to do what I wanted despite them. However, it wasn’t until last July that I started using the word “disability” to describe one of them, and the other I only really accepted as such a month or so ago.

And when I try and figure out why it took me so long, the answer that keeps coming up is “ableism”.

To start from the beginning…

I began stuttering when I was around five years old (although there was something strange about my speech even before then). This is not all that unusual in childhood and goes away in the majority of cases – especially for girls. I, however, was an exception; it stuck, meaning I now have it for life. Stuttering is incurable after the age of about seven or eight.

It’s hard to gauge severity because a) that tends to vary a lot; I’ve had phases where I was almost fluent and phases where even I could barely understand what I was saying and b) I honestly have no idea what the average is. I meet most other stutterers at self-help groups or speech therapy, this is not a representative sample. However, my stutter was almost always highly noticeable.

Did I call it a disability? No. Even as I went through life with “when is the next block coming up” constantly running through my head, quietly divided life into segments based on my fluency in various situations and proceeded to try and avoid many of those marked as “danger” (which continues to this day; there’s a phone call I’ve been putting off for almost a year now). Even as, in school, teachers would adjust their oral grades for me based on the stutter, as I decided not to try to get a part-time job because most of the jobs for teenagers I knew were some form of service that involved talking to customers and I figured that no one would ever hire me anyway. Even as I went to uni, decided I wanted to be an academic and realised that chances were no one was going to hire someone to be a lecturer if they had no idea whether they’d be able to present the material in the time allotted or whether students would be able to understand them. Even as I worried about job interviews, about discrimination (and lemme tell you, the stats about average money earned by stutterers vs. nonstutterers make for depressing reading.) Even as I decided to go to speech therapy while highly dubious about it and not really wanting to but thinking it was necessary. Even as I spent most of my free time in said therapy in tears because I hated the way they wanted me to speak, the ideal outcome of the therapy, because despite all the above I’d never really *minded* the stutter but now I felt as if I had to pick between being able to speak in a way I felt comfortable with and the career I wanted…

I never considered myself disabled. After all, as said I’d never really minded the stutter per se, just the fact that it caused problems in my life – I didn’t hate it and I wasn’t, you know, completely miserable about it. Also, a speech disorder wasn’t really, well, crippling or anything. I could still go out and do everything I wanted to do, after all, and I didn’t need help to live or anything. It wasn’t as if I was deaf, or blind, or in a wheelchair-

Looking back, I cringe at the things I thought back then. What a completely wonderful bit of ableism, deciding that anybody who was “really” disabled had to be entirely miserable and hate it, that only things like being deaf or blind or in a wheelchair “counted” and that those people must have severe issues doing things and unable to live on their own-

Ironic, in fact, because at the same time *I* had severe issues doing things and started to realise I was probably incapable of living on my own. This is where the second disability comes in, you see – namely, the Asperger’s Syndrome.

As said, I figured out the AS when I was eighteen – and refused to consider it a disability for the exact same reasons as above. Only moreso – AS was, well, *me*. It was the way I thought, it was the way I parsed information, the way I experienced the world. Take away the AS and you have a completely different person – and I’m not saying this in the sense of “if I’d never had AS I would’ve developed completely differently”, but in the sense that things I consider parts of my personality are symptoms of Asperger’s. How could *who I was* be a disability, be all those terrible things? No way!

This state of affairs lasted until last summer, when I was rather forcibly confronted with the issue. I was bored, browsing online and ran across a post by an Real Disabled Person With A Real Disability (TM). I read what she had to say about her life basically going “wow, that sounds awful, I’m glad that’s not me” – and then, suddenly, out of clear blue sky – “wait a minute, I do that.”

I’d felt that most aspects of my Asperger’s were quite well under control. I can pass as neurotypical in most situations (I think), sensory issues are a pain but provided I avoid most noisy environments and don’t touch people I’m pretty much fine, etc. But there was one huge one I’d missed – executive dysfunction – that was (and is) causing serious problems for my life, that makes me quite sure I won’t be able to live on my own and worried I may not be able to hold a job, that makes the fact I’ve even got this far seem kind of miraculous.

It took being confronted with *this* for me to decide I might, possibly, be disabled. And oh, I struggled with it. I went through several days feeling as if I was about to throw up. It took me months to properly accept that the label fit.

Bear in mind, nothing had actually *changed*. I had become aware that some problems I had might have a different cause than I suspected (and might not magically vanish because I wanted them to), but I still had the exact same capabilities as the day before. My issue was the word “disabled”. And the only possible reason for taking such huge issue to it and finding it so incredibly difficult to accept that it might be accurate was, of course, because in my head being disabled was a terrible, hopeless thing and it made me sick to think I might possibly be *that*.

I nowadays think of the label as something positive, something empowering, something that means it is okay for me to say “look, I have serious problems with X, is there some way to change things so things will be easier for me?”, that I can accept difficulty and appreciate effort even when they pertain to things like going shopping so you can eat dinner which are not usually considered difficult, that sometimes my problems are not actually *mine* but other people’s, that things like feeling you have to do a lot of work to make yourself speak in a way you hate so you’ll have chances other people take for granted are unfair… I think the ideas espoused by the disability rights movement have been really helpful for me, and that many people can profit from them. But it was a really long and rocky road to get here, and travelling it gave me a nice and intimate look at some of the ugly, ugly beliefs I had about disability – beliefs that are, I think, rather unfortunately common among people who never had to set foot on that road.

So – here’s a question for all those people like I was back then, who have something that they know *technically* qualifies as a disability but refuse to consider themselves disabled.

Why?

What do you connect with the word “disabled” that makes you decide it can’t apply to you?

Just think on it for a bit..

May 1, 2009 Posted by | disability | , , , | 7 Comments