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.

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.

It hurts every time I find a new blog that looks interesting and decide to search for the term “asexual” in a quick exercise in “how safe will this be?” and find – not nothing, no, nothing is what I am expecting. Worse than nothing. I find posts about how the stereotype of certain groups as asexual is wrong (but what about me?), how the way the older characters on a TV show are portrayed as asexual is downright frightening (how odd, I’ve been wanting better representation on TV for years now seeing as the only openly asexual character I know of is from a NZ soap opera – what show were you watching again?), over and over the talk of asexuality as a negative, as a stereotype that must be dismantled, and not one single post on asexuality as a sexual orientation.

Thanks! I am definitely going to feel safe in my sexuality on your blog!

It hurts when I wander into discussions about disability and sexuality and inevitably attention is brought to how disabled people are stereotyped as asexual and how this is completely wrong and it must be made clear that disabled people are sexual beings like everyone else – and you do not want to know how much *guilt* I have felt because I am disabled, and I am asexual, and it feels as if this means I am letting my side down!

(The unbelievable irony of this: one of the first things I think of when I consider how intersectionality applies to my own life is precisely that of asexuality, or to be precise aromantic asexuality, and disability. Because I find myself in the rather unpleasant position of realising that I will not be able to live on my own, but at the same time almost the only socially acceptable form for a cohabitant/caretaker/etc. for an adult reasonably-independent person is the romantic partner and I have absolutely zero desire for that kind of relationship, and adding it together with my career plans which make nonstandard living arrangements even more unfeasible the whole thing starts looking like an enormous Catch-22 – but I cannot talk about this because I am too busy feeling ashamed for being an asexual disabled person and besides, the words I need for it are in use.)

I stumble across this stuff absolutely everywhere, and it hurts, and I get sick of the implication that being asexual is something to be ashamed of or that being thought to be asexual is something offensive. Although, of course, I know the stereotypes they’re talking about, and they are there and are harmful and they need to be worked against… but wait a moment here, since when is being asexual such a terrible thing?

This is the main reason for this post: using “asexual” as a negative word for describing these stereotypes is not just offensive and hurtful, it is not even remotely accurate. I could possibly have put up with the hurt and feeling marginalised if I felt the term asexual was at least applied in a way where it was correct to use. (Yes, I am a mathematician at heart.) As things stand, you’re taking the entire load of negative things in these stereotypes, a lot of which have nothing to do with asexuality-the-orientation whatsoever, and dumping it all on us – and I hope you’ll forgive me if I would like that to stop!

Here are two examples of how I realised that these stereotypes don’t have much to do with asexuality as I know it:

Example one, there’s another really ugly trope associated with fat/elderly/disabled/etc. women apart from the “no sexual desires” one, which actually gives the lie to that – namely, that *if* any man should deign to want to have sex to such a woman she should immediately bow before him and gratefully accept because it’s not as if she’ll get any better offers-

But wait a moment. Us asexual folks are rather… well, we’re asexual. If a random guy offered me sex, I would laugh in his face. If Brad fucking Pitt offered me sex, I would laugh in his face. I’m not attracted to men, the same as I’m not attracted to women. I don’t want to have sex. With anyone. Ever. This stereotype, to me, paints these women as sexual creatures (which is obviously not to say that any sexual woman must immediately consent to sex with anyone who wants her – but to associate that stereotype with *asexual* women is patently absurd), who clearly want to have sex and have sexual desires. So how come we get the blame?

Example two: I’m reasonably sure the “asexual” disabled stereotype actually gets used against asexual people to invalidate our orientation.

This is how: There are a number of “standard” responses an asexual may get when coming out – things like “were you abused as a child?”, “are you a lesbian?”, “oh, you just haven’t met the right guy yet”, “do you have a hormone problem?” and other such cringe-inducing things. One of them is this: “Are you sure you’re not autistic?”

I tend to look at this with bemusement because, well – yes. Yes, I am autistic. I am also asexual. Autistic people have sexual orientations too, you know. And although it can be argued that tactile hypersensitivity caused by autism might make touch so unpleasant as to “turn” a person asexual… even if that’s the case, it’s not exactly as if anything can be done about it. (Seriously. It’s possible this is the case for *me*, as I really dislike being touched. But how on earth does it matter? There’s no treatment to reduce hypersensitivity so I’ll be lacking sexual attraction either way; the whole question of cause is really irrelevant.) The question “are you autistic?” is a non-sequitur, its answer has nothing at all to do with the question of the person’s sexual orientation. However, the way people *use* it is clearly meant to shut down the discussion, as if being autistic means you must immediately hand in your sexual orientation and withdraw from all discussions about sexuality (Exhibit A.)

I find this a very clear example of the stereotypes associated with the sexuality of disabled people (you can’t have an orientation! You’re disabled!), except that we can’t very well call it stereotyping them as asexual if it’s being used to silence asexual people!

The more I look at what the stereotypes actually are, the less I recognise my orientation. Asexuality is a lack of sexual attraction, but it doesn’t have to mean lack of dialogue about sex and sexuality, lack of doing things associated with sex and sexuality (sexy clothing, forex), lack of an opinion about the matters – really, what I see in the stereotypes is passiveness. Women belonging to certain marginalised groups are not considered to have voices when it comes to sexual matters – which also explains the seeming contradiction between “no sexual desire” and “not allowed to say no to a sexual advance” (note: *all* women get hit with the latter to some extent, but with further marginalised ones I believe it’s even more extreme). Identifying as an extremely little-known and marginalised sexual identity, on the other hand, is usually very much an active thing. And anyone who’s ever spent any time on AVEN or in the asexosphere knows better than to suggest we don’t talk about sex and sexuality.

These, you see, are the things I do not see in the stereotypes about various groups of marginalised women:

I don’t see them organising, making their own communities, creating their own vocabulary. I don’t see them talking – about life and love, about having sex or negotiating relationships or aromanticism, about how strange the whole sex thing is from the outsider’s point of view, about anything like that. I don’t see them going on talk shows, doing interviews, being in pride parades or indeed doing anything visibilitywise. I don’t see them in discussion with LGBT societies, I don’t see them in talks with psychologists about the DSM-V and the problem that is HSDD. I don’t see them reading and writing erotica (some from the anthropologist’s perspective, some because they just find it hot), I don’t see them making sexual jokes, I don’t see them laying out their attitudes towards sex (fascinated? Indifferent? Repulsed? In-between? A combination?). I do not see anywhere the width and breadth of asexuality, I don’t see our activism, I don’t see the vibrant life of our community, I don’t even see typical asexual attitudes. All I see is women being stripped of their voice and agency, women being presented as completely apart from the world of sex (except when someone wants to stick their penis in them, of *course*), and them then being called “asexual” because of it.

Can you understand why I find that offensive? Can you understand that I really, really wish you’d find different words, more accurate words for that? Here, a couple of suggestions for you: desexualised, made sexually passive, stripped of sexual voice and agency – these may not be perfect but they are to me a million times preferable to the way things stand.

And, you know, there’s more in here (I’m still working through my thoughts on how feminists get stuck with “asexual”, which though still a negative has rather different connotations than above, and how this might for once have something to do with real asexuality and the stereotypes we get tarred with), but this post is getting rather long and the more I write the more clear it seems to me that you should not use the word for people’s identity as a shorthand negative descriptor for things which have little to nothing to do with said identity, *especially* if you engage in little to no discussion of said identity.

It is offensive, it is hurtful and I would very much like it if you stopped.

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.

*****

I don’t actually remember very much of my childhood; I have a suspicion that my memory is unusually bad in some ways. One incident, however, stands out.

I am twelve, at school. I cycle to school every day. Today, there is a slight problem: I have forgotten my bicycle lock at home.

At first, it’s no issue – I run into a classmate who offers to lock my bike up with hers. After school, we both head down to the courtyard together; she unlocks our bikes and cycles off. I am about to follow – and then I remember. I have sports this afternoon, over at the public pool. But what do I do with my bicycle? I don’t have a lock. I can’t just leave it at the pool or the school without a lock.

Neither can I go inside the school to ask anyone what I should do; I’m not allowed to take the bicycle inside, and I can’t leave it unwatched.

I can’t just go home. That would be cutting class.

After having eliminated all other possibilities, I come to the logical conclusion: I should stay in the courtyard for the two hours of the sports lesson until the teacher comes back and then tell her what happened.

This is the main thing I remember: waiting and waiting and waiting in the summer heat; my watch battery ran out, so I didn’t know how long I’d been there, how long I still had to go. I remember my class coming back – finally! – surprised to see me there. I remember explaining what happened.

I don’t remember how they reacted, how my mother reacted when I told her, but I remember the feeling of pride at having made the right decision turn to utter humiliation as I slowly realised that – no, it hadn’t been right. It had been dreadfully wrong. There had been an obvious thing to do that I missed (what was it? I couldn’t figure it out). The decision I had made instead had been nothing short of absurd and laughable, and I deserved to be ridiculed for it.

Again.

I remember the feeling being very, very familiar. And I wonder what girl feels *proud* about finding (what she thinks is) a nonobjectionable course of action in a situation like that.

This was not an isolated incident.

*****

(Talking about the incident some years later, my mother tells me that that was one of the moments where she wondered whether there was something seriously wrong with me. Another time, she mentions that before I started going to school and wowing teachers, she had suspected I was stupid; I am quite certain about what made her think that way.

I say that up until the age of fifteen, I was pretty much incapable of gathering people’s thoughts and intentions unless they stated them explicitly. Sometimes, I suspect that this is only partially accurate.)

*****

This is what twenty-odd years of life with a mind that works differently has done to me:

If I am asked to make any decision where I am not familiar with The Correct Answer without getting the opportunity to double-check it with someone else, I panic.

For your information, this is not a good life skill.

*****

Time has improved on the matter slightly: I can now often sense when I am in a situation where some of the things I am contemplating are sensible and some are obviously stupid.

Unfortunately, I still can’t tell which is which.

It is a horrible feeling: there you have options A and B. Doing one of them (which one?) will not garner notice (you will successfully pass), doing the other will mean you are ridiculed. You might ask for advice, but chances are that so much as telling someone that you are thinking about this instead of immediately choosing the obvious one (but which?) will expose you to ridicule.

Sometimes it gets worse: option B falls away, and only option A remains and instead of suspecting you now know that people will consider it to be ridiculous and obviously stupid although you don’t know how you know or why they would think so, and you know that there is a different, a *right* thing to do but you’ve eliminated everything else you can think of based on your own internal sense of logic and what do I do?

*****

Another thing I am reminded of reading amandaw’s post: I am so profoundly grateful for my mother.

My mother appears to have come to terms with the fact that her daughter has a distinct deficit in certain areas of gesundem Menschenverstand, common sense. My mother is the one person I can ask anything, anything at all, even if I have the sensation of “I should know what to do about this but I don’t” gnawing at the back of my mind. My mother has learned to deal with her daughter checking anything and everything with her in biweekly telephone calls – should I respond to this thing with an e-mail? Is this okay to put into it? I am thinking of doing this with my friends, what do you think? Do you think I should arrange a meeting with this person for this reason?

As a result, I can avoid the freeze-in-panic reaction on all but very short-term decisions, which are not usually that important.

Avoiding the panic reaction on important decisions is crucial to being able to manage my life as well (ha!) as I do now.

Conclusion: I will probably never be able to live independently without this kind of help.

*****

I used to enjoy roleplaying. I used to simply have my character do what I thought was best and have no worry at all that the decisions I was making were absurd. Then the worry crept in without me noticing.

I wasn’t always like this. I learned this, bit by bit, wrong decision after wrong decision. Or should I say – humiliation after humiliation, bad reaction after bad reaction, ridicule after ridicule.

This is what I learned in decision making 101: You do not have the capability to make reasonable decisions. Don’t try.

Thank you, world.

*****

Gesunder Menschenverstand – “healthy human reason”. Common sense. Both my native language and English are very clear on the matter – this is something that is common to all humans. Not having it in its entirety is not an option.

Why? Why must we be so normative? Why the ridicule and humiliation the instant someone does something that doesn’t quite correspond to how we think their mind should work? Why the fuck is it that when I do something you think is absurd, instead of, oh, explaining to me why it is absurd you tell me that there is no excuse for not knowing this already and proceed to laugh at me for that?

Do you have any idea of what this does to people?

*****

And, you know, on top of this? Even if I know which options are Right (TM), making a decision is still incredibly difficult.

This is how I can track how well I’m doing at a certain point in time: I go shopping.

(I usually go shopping once a day, as I have managed to train myself into going out to buy food from the corner shop in the evenings just before it closes. This is extremely important because it is very, very difficult for me to leave my room; in the year or so I lived away from home prior to managing this bit of routine I had gone without food for up to two days because I couldn’t get myself to go shopping. Now I will almost always get at least one meal a day and have pretty much banished the danger of accidentally starving myself to death, which is something of a relief.

Unfortunately, this means I have to get some form of ready meal, which usually winds up being frozen pizza – even the pizza lover that I am would be quite happy to not see another Dr. Oetker’s Ristorante for the next five years at this point in time. Believe me, I have things to say about society’s opinion that healthy eating is some sort of moral issue – but I digress.)

Whenever I go shopping with people, I am surprised at how efficient they are. What do we need? These three items, in these three aisles. So let’s go – aisle one, item one, aisle two, item two, aisle three, item three, we have everything we need, go to the check-out and leave. Wow, that was fast, my head’s spinning.

If I go shopping alone, I circle. Aisle one, item one, aisle two – well, there’s not really anything I need from aisle two but let’s just walk through it anyway and have a look at the cheeses, does this place sell quark, I’ve always wondered, aha it does I can make cheesecake sometime, now let’s get item three – but wait, item three was in aisle one so let’s go back there-

If I’m doing really well, that’s all.

If I’m not doing really well, I start becoming unsure. Do I want to have this for dinner? Or this? Or maybe this? No, wait, let’s go back to option one. Or, no, let’s get that instead. And how about Doritos – wait, no, let’s get a bar of chocolate instead… the circling, as well, grows more.

If I change my mind quickly and less than, oh, five times, that’s means I’m doing – well to average, maybe a little bad. If it’s more, or if I wind up staring at an item for a long time unable to make up my mind, things aren’t looking so good.

Worst case scenario: I’m stuck in the grocery store, either wandering around in circles or staring at a particular item, on the verge of tears because I’m utterly unable to make up my mind as to what to buy. This is Red Alert, Intervention Needed levels of bad (unfortunately, being at this stage also means I no longer have the ability to get help, but oh well.)

I’m reasonably sure this cannot be attributed to the above, but rather to the executive dysfunction part of an ASD, which is somewhat severe in my case. My point, however?

If I have an impairment in the area of making decisions, it would have been kind of society to teach me some things to make that easier, instead of giving me a neurosis about the matter on top of it.

*****

And you know, I could go on about what it means to be taught to mistrust your own mind, your own thoughts, your own damn *reality* so much that you’re no longer capable of making a decision without outside reference, but this post has become long enough and I think what I’ve written should really speak for itself.

Pity about that common sense thing, really.

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.

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..