So since I am actually, amazingly, still getting some comments on this blog (sorry for not answering them, honestly) I think I ought to explain why it hasn’t been updated and where exactly to find me.
I created this blog when I started getting into social justice activism although I already had an LJ/DW account, in order to try to separate out my SJ identity from my fannish one. It didn’t work very well; I had real problems posting anything on this blog, some of my friends on LJ and DW said they were interested in my SJ posts and the separation was doing my head in. Finally when the disability Feministing boycott happened in October 2009; loads of the people involved in that and the foundation of FWD were active on Dreamwidth so I kept not being able to figure out what account to comment under, feeling as if I was deceiving people because I was using two names and then finally went “damn it, I give up, I’ll just post everything on Dreamwidth from now on.” Thus, the death of this blog.
So, hi, if you stumble across this blog and go “only four posts! the last one one and a half years ago! why hasn’t this person written more?!” (hey, I can dream) – hi, my name is Kaz and you can find me at my Dreamwidth journal.
This is something that has grown out of my contemplating (again) writing an asexuality 101 post for Feministing (three months after the fact but trust me you do not want to see what my first attempts looked like), and thinking about how I would definitely, definitely add a section on the end a la “what I would like you, the reader, to do” (because 101 is basically providing a free education and I’ll be damned if I can’t ask for at least some minor changes in return), and wondering what I would put into it-
And the very first thing that comes to my mind is this:
Stop using the word “asexual” as a negative.
Part of me cringes at phrasing it this boldly, tells me that I should understand), that things like talking about the way disabled women or older women or fat women or the like are constructed as “asexual” are part of mainstream feminist thought and have been since before our movement existed (although *we* still existed, isolated and alone and feeling broken and inventing our own words for ourselves because no one would give us any-) and, you know, who am I to come along and point at this body of work and go “actually, I find this offensive?”
Another part of me goes – but, well, it is offensive. And it hurts.
This post was inspired by a line from amandaw’s post here, but is really only tangentially related to it if at all. All the same, read that post; it’s amazing and powerful and something that needs to be heard.
The line in question was was this: I don’t know what else to say but that the diagram showed the inner workings of a mind that works in a completely different way. It wasn’t nonsense. It had logic to it, but it was its own logic — not the logic most of you are used to using. It got me thinking about my experience as someone who’d say that her mind also works in a different way and her internal sense of logic is also somewhat off from what’s expected, even if not the way amandaw is talking about – and what the world has taught me about it.
A few weeks ago, I played a game of DnD with a friend.
Background for me and roleplaying games. As a teenager, I’d always really wanted to RP (this probably connected to my brother’s fondness for it and my hero-worship for him), but only found a group for a short while before I went off to university. My first year, I joined the university roleplaying society and had great hopes of actually being able to play properly and with people my own age. Unfortunately, it was there that I met the guy with whom I had my first (and hopefully last) sexual encounter, which was sufficiently traumatic that I spent the next four years avoiding him and anything to do with him. Including the society.
I hadn’t played since, and was as a result very much looking forward to this game.
It was torture.
You see, I had to make decisions.
This is what twenty-odd years of life with a mind that works differently has taught me:
Your own internal sense of logic is not valid. Decisions you make that are based on it are usually wrong – no, not even wrong, they’re *absurd*. If they are not, it was sheer luck that led you to an acceptable conclusion. Therefore, you cannot rely on your own instincts, arguments or thoughts when you need to make a decision. You must always base it on what other people, *normal* people, do and say. If you do not, expect to be mocked and attacked for it, expect people to shake their heads and tut about how you could do something so utterly stupid, have you no common sense?
I suppose you could describe this post as an argument against the concept of common sense.
The other day I was at the bookstore, looking for a specific book. It’s called “Managing Asperger Syndrome at College and University”. I’ve been looking for it on-and-off for ages now, since it was very highly recommended to me by the Disability Resource Centre and I am therefore quite hopeful it will have some tips and tricks to better manage things like, oh, not missing one out of every three lectures.
So I am wandering through the store and have finally narrowed it down to two sections where it could be. One is “Self help”, the other is “Psychology”. Which one is it in?
As it happens, neither (the bookstore did not stock this book), but all the books about autistic spectrum disorders were in the “Psychology” section.
It only occurred to me today how this is one of those thousand little cuts, one of the tiny unremarkable things that combine to tell me that I am not normal, my problems are not normal and I should not expect normal people to accept that they exist. Because even the books I would classify as obviously self-help (in part the one I linked but also things like this book) get whisked onto the Psychology shelves as soon as they’re by/for autistic people, to sit next to Baron-Cohen’s book about the autistic spectrum from the academic perspective, a book on sociopaths and The Man Who Mistook His Wife For A Hat. The genre of self-help, you understand, is the exclusive province of neurotypicals.
And, as such, a province I’m best off avoiding. Having a quick flip through some of the books in that section taught me that much. Even if they sound as if they will be very helpful, chances are they will assume a neurotypical mindset. “The Body Language Bible”, for instance, was of some interest to me – you could say I am something of an involuntary expert in explicitly learning nonverbal communication – but I wound up giving up on that book because it started off waxing eloquent about how lyrical and beautiful and wonderful body language is and how it forms the majority of the information conveyed in conversation, which is why it is so great that we all pick up an intuitive understanding of it almost immediately-
Wait, hold the train, I think that word “all” is slightly misplaced there. You picked up an intuitive understanding when you were just a toddler or even younger. I didn’t. I only realised body language existed when I was fifteen and have spent the time ever since frantically trying to catch up. I’ve got a lot better, but it’s more along the lines of “hey, now I can tell most of the time when people really want me to stop talking about a subject!” and nowhere near the level this guy claims I am supposed to be pretty much born at. I’m still lucky if I can pick up *anything* other than “this person does not appear to be incredibly bored with what I am saying or very upset with me” via body language in a given conversation (and even that much is dubious). If I manage to figure out anything relatively complicated – where “relatively complicated” means things like “realised a character in a movie was supposed to be nervous because his eyes were moving very quickly” – this is a moment of intense pride and I will hug the memory to myself for years. Majority of the information in conversation? Are you kidding me?
(To be honest, I still can’t quite believe that. How do you even measure that anyway? Are you really telling me that the way my eyebrow twitches conveys more information than me saying “The primes belonging to the elements of the primary decomposition of an ideal I are precisely the associated primes of A/I”? Er, assume the person hearing this is an algebraist.)
Considering it started that way, I am not optimistic about how helpful this book about body language will be to me and mine. This is quite frustrating, given that I’d think such books would be especially *useful* for us poor auties and Aspies trying to navigate an NT world. C’mon, do you lot really need to get even more absurdly good at picking up that kind of stuff? Give us a chance to catch up!
Lots of them are like that. I’m afraid to even look into most of the books. As soon as procrastination comes up, for instance, it is liable to contain a mixture of helpful advice and advice that is the exact opposite of what I need to do, and trying to figure out which is which is a rather poisonous activity. I learned *that* lesson from the leaflets on procrastination at the counselling service; a couple of things that might possibly be useful and then wham – “try to phrase things as ‘won’t’ rather than ‘can’t’.” When I’d spent the last eight or nine months trying to get away from the “won’t” and accept that there was a “can’t” in there somewhere! Given how difficult I am finding it to figure out what the ADD-like symptoms associated with Asperger’s I have mean in a culture where the only framework I am given for thinking about it is that of laziness, hearing that kind of thing can be nothing short of toxic.
Who knows, maybe I’ll publish a book on it someday – something on the lines of “‘Ten Easy Steps to Success’ – How to Navigate the World of Self-Help with Executive Dysfunction”.
You’ll find it in the Psychology section.
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.
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..