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..

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May 1, 2009 - Posted by | disability | , , ,

7 Comments »

  1. Damn… if I hadn’t recently finished my ‘BADD roundup/review’ post, I would have included this in it. Nice post, I enjoyed it. It’s always nice when people actually question themselves, instead of assuming the problem is just with them (whoever ‘them’ are).

    Comment by JackP | May 1, 2009 | Reply

  2. It’s my opinion, that for the vast majority of stutterers, the concept of being disabled is a belief that one accepts. And if it is accepted, then they are. If the concept is rejected, then they are not.

    Overt severity does not seem to have a direct 1:1 correlation with life severity or quality of life.

    But fear does…

    Comment by stutteringme | May 5, 2009 | Reply

  3. I’ve seen a lot of discussion about this, this year: about how the word disabled makes people think “not me”. And I know I’ve experienced it myself. I’m glad, that I’m able to claim it, since it’s a part of who I am, but for the longest time, I was so sure it just didn’t fit me. What doesn’t fit is the ableist stereotype of what it means to be disabled… and I’m perfectly happy to not claim that.

    Comment by NTE | May 6, 2009 | Reply

  4. Wow, I wandered over here after reading your comment on my blog. You have some great stuff here. I recently worked, and still volunteer, for a non-profit organization that helps people with disabilities. I too prefer to talk about what we are able to do.
    I found that my stuttering was actually quite an asset with my work there, meaning that most of the individuals I worked with had absolutley no problem with my stuttering, and this applies both to the people I supported and staff I worked with.
    I learned so much from people with AS, autism, Down Syndrome, and other more complex cognitive impairments. Many people with DS stutter, but the stuttering is often overlooked as not possibly needing attention since their intellectual disability surely was more “disabling”. In fact, when I pushed, it turned out that several people with DS who stutter wanted help with their stuttering and secondaries. I was able to use my contacts with speech therapy to get3people with DS and stuttering into therapy for a year, FREE, and it turned out to be a great thing for all of us. No one should ever assume that someone’s stuttering shouldn’t be bothered with or deserves attention just because they have other stuff going on.
    Good for you, for being open with all that makes you you!

    Comment by stutterrockstar | September 20, 2009 | Reply

  5. Oh wow, hi! :)

    I actually find the intersection of AS and stuttering quite fascinating as I think AS has really influenced how my stuttering affects me. In particular, I get the impression I have much, much, *much* less negative emotions tied up with it than pretty much every stutterer I’ve met, to the point that I didn’t want to go to speech therapy because I didn’t want to lose my stutter as a teenager (and only did it reluctantly later because I was afraid it would be a problem for my career goals). Which is, needless to say, unusual to the point of absurdity for a stutterer! My pet theory is that the vast amounts of negative emotions stutterers connect with their stutter are formed by seeing all the negative reactions people have to it from childhood onwards – however, those negative reactions are often not explicit, but via body language or tone, and as a child I simply didn’t register that kind of thing. So I missed out on the vast majority of the negativity stuttering kids tend to be bombarded with (especially because in my environment no one actually told me they found it bad) and grew up a happy, cheerful kid who didn’t mind the stutter at all.

    Which I tend to think of as a very good thing, because I like feeling confident and secure about my stutter, but it does make me feel something of a freak in stuttering spheres which is why I don’t comment much. >> I do like your attitude to it, though! Far more familiar to me than most people’s!

    And, of course, there’s that AS has led me to identify as disabled which has led me to consider stuttering in the context of disability rights discourse and ideas, which I do plan to write some (rather radical) things about at some point. One of the things that has frustrated me about the stuttering blogosphere is that nobody seems to have that kind of background – the only discussion about stuttering-as-a-disability I saw had everyone going that they didn’t want to consider themselves disabled and didn’t even mention the social model of disability. Then again, I might just be looking in the wrong places.

    And re: your actual comment (…*guilty*), I remember reading an article about kids with AS having other issues, such as stuttering, go undiagnosed at a high rate because people would shove everything onto the AS. I wasn’t diagnosed as a kid, which at least got me speech therapy! It makes sense that it happens for kids with Down’s and so too (something weird about them? Must be the disorder! Multiple issues cannot exist!), and it’s great that you managed to help them get some treatment for the stuttering and related symptoms. :)

    Comment by Zailyn | September 20, 2009 | Reply

    • OK, we must be kindred spirits of some sort, glad we ran across each other. If you look back in my blog, you will see entries titled, I Don’t Need to Be Fixed, Acceptance, etc. I too have found that stuttering is what makes me me, and I don’t know if I would like me if I didn’t stutter.
      I am not at the point where I consider my stuttering to be a gift, but I have rather comfortbaly accepted it,. Except these blocks – those can go.
      In my support group, other members see me as the radical one!!! :) Because I preach acceptance rather than chasing fluency. Some of them are actually kind of seeing that maybe there is something to be said for how I think.
      As for disability, I do not feelmy stittering right now is a disability. But for the years I avoided just about everything, yes, it was disabling then.
      People who can’t get and keep jpbs should disclose as disabled for that purpose – to get help and accomodations.
      I would love for you to consider being a guest blogger on my site sometime. Your thoughts about writing something radical that might rattle the blogosphere would be a good fit on mine. Ha, ha! Keep talking and writing!

      Comment by stutterrockstar | September 20, 2009 | Reply

      • I am very glad to have found another stutterer who thinks similarly, believe me! :) It’s just… I actually find stuttering, how it grows and changes and adapts, /fascinating/ if one stops viewing it as a failure or defect. Going through speech therapy has made me really realise how stuttering will out! which is I think one of reasons therapy tends to fail so disastrously, because if you “cover” the areas in which you stutter now the stutter will search until it finds a spot you left open and then change to take advantage of that. (I now stutter on completely different sounds, in completely different ways, to how I did pre-therapy. In part I miss my old stutter, in part I’m just staring at it going “wow, this is actually really cool!”) Which sort of makes sense in that you’re trying to suppress your natural mode of speaking, to my mind – this is how I think of my stutter, which is why it is really kind of gutting to try intentionally to lose it.

        Re: disability – the thing is that I don’t think that whether something about me is a disability or not depends on how *I* deal with it, but rather how other people do – and whether society in general is set up to deal with it. So I don’t consider myself disabled because of the stuttering because I limit my life because of it, or some such, but rather because I’m worried I won’t be able to get the job that I really want and have been aiming for since I was fifteen solely because of the stutter (I have had people flat-out tell me it’s impossible), because I know that every time I meet someone new they might start making snap judgements (conscious or not) about my intelligence, confidence, bravery and general worth as a human being solely because of the stutter, because apparently (in the US) stutterers earn an average of $7200 less per year than non-stutterers, because of all that and so much more. That is disabling. For me, saying I’m only disabled depending on how I think about the stutter means pretending that the only thing that might ever cause me problems because of my stutter is me and other people have nothing to do with it at all, which is emphatically not the case. (This is why I say I’m radical, btw! Because I don’t just not blame myself, I BLAME SOCIETY. IT’S ALL SOCIETY. ;))

        I would love for you to consider being a guest blogger on my site sometime. Your thoughts about writing something radical that might rattle the blogosphere would be a good fit on mine. Ha, ha! Keep talking and writing!

        …*BLUSHES* oh wow, that would be really cool! Thank you so much! :D I’m just going to have to figure out when and how and, er, probably write everything well ahead of time because I am incredibly flaky and prone to vanishing and don’t tend to update much. (Just look at my blog. >>)

        Comment by Zailyn | September 20, 2009 | Reply


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