Weird, but until I started to need and be more fluent with assistive technology such as screenreaders, I never even thought of myself as disabled. Of course since that I’ve been asked on occasion have I always been or had that thing and so on.
This post was born from this article about four physicists with disabilities, and also this awesome video about inclusive design, as a post seems more appropriate than a huge twitter chain of rants. In the article about the physicists with disabilities what bugged me enough to comment about it was listing Albert Einstein in it, and only for his (suspect) Asperger’s, which these days thanks to DSM-V falls into autism category (which… since it is a neurological issue, why the f is it in a book about psychiatry anyway? Shouldn’t they also list other neurological issues like Parkinson’s in the same bible of shrink-invented diseases?). So Einstein was disabled only because he had Asperger? Are you kidding me? On the video there is a woman who tells she didn’t know she was blind. Wait, … what? How can you not know…? Oh wait, that too sounds familiar. How do you not know you should learn braille (or if you know how to read it didn’t think of it anything different than regular reading), or how you never realized others don’t need to ask for walking directions for indoors places etc.
I’ve known I have asperger’s since at least my twenties. I ended up reading about it on several occasions and it just always felt like “this is me” and “how can this be something others don’t have”. It was the normal to me. I didn’t quite know how the others’ minds work, other than differently from mine. There were no good books explaining me how the neurotypicals think. I guess it was all something that was just assumed to be learned between the lines at school and home, and while doing the whatever age-appropriate socializing with age peers of the same assigned sex. It just didn’t really happen or click. School did a good job in specifically teaching how everything works, but in the societal set rules. Which usually just made no sense to me, but I always thought that was a cultural thing of not fitting in the country there. I never thought that asperger’s made any more difference to me than being INTP or some other letter combo in meyer-briggs, or being left-handed or having eyes of whatever color. And now I’m getting really frustrated reading about it being considered a disability.
It is a disability but it is largely due to how people in a given society communicate. Societies and communications work on neurotypicals’ rules. So all that eye contact, facial expressions and body language, how tones of voice are used, when it is appropriate for persons to touch each other and how much they are supposed to show emotions in which context are all set by the neurotypical standards. And those rules depend on the country. So the same person with the same asperger’s is more or less disabled depending on the country or culture they live in. If I for instance lived somewhere like in Estonia where emotions are largely kept inside, small talk to random strangers is performed only by persons with mental illness and American tourists, and not much facial expression is expected, and a language spoken around does not sound as overly emotional as American English, I would be much disabled. But since I live in in USA, the expectations are for the local neurotypical standards… so as a person who was diagnosed as a female when born and who has rather visible boobs and so on, I would be expected to behave in quite a different way. Smile a lot, because women have to smile and appear and sound pleasant. Have pleasant facial expressions, same reason. Sound overly positive and express a lot of emotions, and not be able to control one’s emotions. Because that’s what seems to be expected from people here if they are women. I thought that my not blending int was for a variety of other reasons: languages, accents, low vision, introversion… and on the same time a therapist was wondering in which language I should even be tested, and how to accommodate what I don’t see, in what I thought was just a way to explain everything away. So we can always name other reasons or for once, try the asperger’s.
Here is some of how my communication style differs from the neurotypicals (NT): I listen to the exact words people use. When I read something, I don’t assume any underlying tone being implied (this I get constantly feedback on). So read facebook posts like you read a novel: why on earth would there have to be a drama undertone to everything? So exact words first, and I have a good audio memory. As I remember what people said much earlier or sometimes months or years before, this often creates conflicts as NTs keep changing the details of their stories over time. This comes off as lying to me, and makes it difficult to trust people I catch doing it (most people). NTs love the eye contact dance, and I suck in that. Or I could just be bold and tell them I can’t really see them but I do my best to look in their direction. I can still feel being looked at, and the American style of constantly looking at the other person while speaking or listening feels a bit intrusive. I get it if someone is a lip reader or uses sign language, but for just listening, so unnecessary. My facial expressions and body language were somewhat of the sighted world, but the less I see others expressions (note: I don’t see them in giant movie screens either, so I often love using audio descriptions of movies so I know what kind of expressions people have) the less likely I’m to show them. Now maybe this facial expression thing is part of a low vision thing too: humans supposedly try on facial expressions of others really fast if asked to for instance rate what someone is expressing on test images. So put your face to have the same expression and you’ll know what it looks like. So if you can see thirty kinds of smiles and can feel the difference, you’ll be lucky. I have no clue what a confused face looks like in front of me, or what many other emotions look like. I know what a happy face or a sad face look like, that’s about it. So, facial expressions are things I don’t see and do therefore my best to also not use, as those can often be misinterpreted by NTs. “Why did you have that expression?” heard it too many times. So blankface it is, or some social smile attempt. I’ll settle for the complaints about the blankface expression. I will put on a way of speaking for social occasions, so I’ll try to sound more typically emotional, the way women do, just to pass. Just to make it easier for others to notice the asperger thing. Or to not misinterpret it as the typical “must be depressed” BS logic just if a female person does not sound fake happy like the Americans. I often find it difficult to figure what people really want or are trying to say when they say something else, and also in this Americans are not the easiest bunch to deal with. Often they want to communicate in such veiled ways that I just don’t understand what they really want. I understand the words, not the message. If this needs an example: “it is always so messy in here. You never take the trash out. It would be so nice to have a nice a clean desk here”, when what the person should be saying would be “can you please empty this desk, and put away the dishes please? I am uncomfortable in messy environments”. When the veiled messaging obviously fails, the one using it will become more frustrated and escalate to passive-aggressive style of communication, or just start to behave irrationally, instead of, well, maybe for once saying what they meant. I could go on with way too many examples of this as an aspie, and there seems to often be quite a huge communication barrier between me and the American nondisabled women for that issue. These are just some of the most obvious issues that affect my life every day, and looking back – since I was a kid. I guess I also never sounded neurotypical enough or just had some decreased hearing or my r and s didn’t sound right but I was also dragged to some speech therapist as a kid. Like so many other autistics.
At least I was never put to things like ABA. Going thru mainstream school was bad enough. Learn at the slow pace of others, learn to comply with pointless rules, learn to queue, learn to not question authority. All the things that seemed like wasted time, and were time wasted. Wait, queue, wait, queue…
The communication differences between an aspie like me and the NTs around can feel sometimes big. But I never saw myself as disabled. Because I’ve never known of anything different. I don’t know what it feels like to be nonautistic. I’ve never been nonautistic, so how could I know? I’ve read thousands of books in my life, lots of fiction, in trying to understand others, especially of this same era, and I’ve never met anyone like me in books either, except in crime books perhaps (where people observe and do things and don’t just focus on their emotions, feelings and obsess over dating). It was only after realizing that others don’t have prosopagnosia or alexithymia, and how hugely uncomfortable people get when mentioning things like the assistive tech I use or some of the problems in daily life (like getting lost, needing help in reading labels, not being able to recognize people from looks, or not seeing facial expressions) that I even started to wonder if I should be more open. Well, yes and no to that: being open about disabilities to people who think they know you, no. To new people, yes.
I forgot from the list of how aspieness affects me the non-24. I have massively bad circadian rhythm functionality with my body, so it’s massively relying on melatonin and schedule. That affects everything. Nonfunctional sleep can be massively bad – take it from someone who slept 1-2h in any 24h for several months.
With the combination of the two issues (aspieness being fortified by lack of correctable visual acuity), yea, I’d say I’m comfortable identifying as a disabled person. Not always identifying my exact disabilities as those aren’t the business of random people in the meatspace, but comfortably and confidently, disabled. And back to the original question, have I always been disabled: yes. Yes with the things I am or have, but not necessarily with the same exact problems, extent of interference in my life, or the workarounds. Saying that aloud feels good. Yes, I have always been disabled. I’m apparently also pretty good in it too since I can “pass” in either of the nondisabled groups sometimes.