The Alternate Lexicon
Currently viewing the tag: "disablism"
What gives me away, in the end, is that I don’t ask questions.
It has something to do with tone. I’m never clear if I’m being given a small fact or invited to discuss something larger, deeper, more complex and personal. With a handful of people I can usually guess correctly, but for the most part I resort to ignoring these maybe-invitations; I’ve gotten that guess wrong far too many times to try it.
I very much want to know, that isn’t the issue. It’s not that I lack curiosity about the lives and inner workings of the people I am close to–far from it, really. I am desperate for a glimpse into how they work, how we are alike and dissimilar, because I like that sort of thing, that sort of science of thought. But I can’t bring myself to ask, waiting to be offered tidbits of information and never able to complete the follow-up that is required for more.
It comes out of a sense of not being owed knowledge, which I actually think would be rather an improvement for everyone if it was the baseline opinion instead of the reverse. No one should tell me anything about themselves, because their lives are private and what they want to disclose may or may not match up with what I want to know–and their comfort should always be prioritized (and mine, in turn). No one should get to ask me about being queer, being some flavour of trans, being autistic without my express permission. No one should be able to make sexual advances without my permission. My body, and the mind it holds, are mine alone to share as I deem fit.
This isn’t the default, though, so my inability to ask at all the right times is pathologized and made into a symptom instead of the polite respect that it is intended to be. I would love to know. I’m just waiting for permission.
I am still.
When I was six or seven, my mother told me that flapping my hands was Not Okay. It’s something my cousin did, full of exuberance and ADHD, and it was made clear to me that I was Too Smart For That. He was stupid, no one expected much of him, so if he wanted to flap his hands, it was fine. But I was bright, so clever and sharp, and I should not do those things. People would get the wrong idea.
I became still.
I sit like a small animal, surrounded by predators, every muscle tensing and untensing. If only I could go unnoticed! I wait for the threat to pass, and it never does, because it’s a threat built into the foundations of my culture. Sometimes I let myself flap, or bite my nails, or wiggle with joy, but only after I have given up hope of passing, of being overlooked in my stillness. I think this is the outcome of a life of being instructed not to be exemplary in any fashion. Worse, it incapacitates me in my desire to no longer be still. I don’t actually care what anyone thinks of me anymore. I don’t care if they think I’m stupid, or if it annoys them. I want to feel comfortable in my skin.
Instead, I stay still.
Hi, Dylan. Google analytics tells me someone in Charlottesville spent a while on here late last week. Then you tried to friend me on facebook. I have a hunch those things are connected.
When you tried to friend me, I responded with a single question: why? I’m not sure yet if I’m interested in your interpretation of that question or your answers to it, but I am interested in a thought-ramble about you. Stina complained I only wrote hurt letters to her, and maybe it’s time to fix that.
To start with, I never wrote hurt letters to you for a few reasons. One is because the pair of you are a collective unit, and I knew whatever I wrote would make its way to you. You were my friend first (Stina intimidated me terribly when we met), and we were so close of course I had to be friends with both of you. We told strangers we were siblings. We told your coworkers we were siblings. And I loved you like the brother I wanted to have. You frustrated me and hurt my feelings and I loved you anyway.The relationship we had could not be quantified in words, could not be described with pen to paper or words on a screen. I didn’t write you letters because I don’t think about you in words.
Not speaking to Christina hurts. Our whole relationship was built around words, around the way we used them and had shared language to draw upon. Not being near you hurts. I miss the physical comfort I had with you–it’s hard to come by, for me, but you made me feel at ease.
You hurt my feelings–often, actually. You refused to use the language I asked you to about my sexuality. You were so dismissive of non-binary genders I never made a sound about my own after a single, tentative suggestion. You styled yourself as an expert on the autism spectrum because you work with little boys with social issues. Dylan. I’m not a ten year old, socially awkward boy. I’m me. And I’m autistic. Insisting I was wrong, that I was looking for excuses, that I wanted to be special, it fucking hurt. You never noticed that I hate the Little Prince, hate it with a passion. Instead you got me another, more special, more expensive copy.
I wasn’t a model best friend. I still don’t know the full story about your falling out with your parents. I don’t know if you had lung problems before you started binding. I don’t know why you became a vegetarian. I don’t know a fucking lot of things. I was afraid to ask. Asking feels off-limits, so staunchly rule-breaking I can’t do it–not an excuse, just an explanation.
I don’t know anything about you anymore, and I’m no longer sure you know anything at all about me. I’m not sure I want to be friends with someone who made me feel inferior all the time. So, why? Why ask? Why now?
I tend to enjoy the Thinking Person’s Guide to Autism, a group blog authored by adults and teens on the spectrum and family members of people on the spectrum, with a decidedly pro-science, pro-research bent. A recent post about presuppositions got me thinking about the value of diagnosis (self or professional) and being open about that diagnosis.
Okay, so presuppositions are the assumptions all people make about the way other humans work. Everyone has them, but sometimes they don’t match up very well–this is where conflict happens. They involve all axes of oppression (class, race, cultural background, gender, etc) and when we interact with someone who is not a close match of our own experiences, we tend to rely on stereotypes to form our presuppositions about how they will behave.
This is, obviously, a big sticking point for people on the spectrum. We don’t naturally behave or respond the way most people do, at least not innately. Things like delays, stimming, lack of eye contact, avoidance of people, they’re all traditionally seen by researchers through their own presuppositions; that is to say, researchers make assumptions about what autistic behaviour means based on what it would mean IF A NT PERSON behaved that way, rather than consulting autistics and getting a general consensus. See the problem?
This is all related to being aware of being autistic (via self or professional diagnosis) and being open about it because I think that is the only way we are going to change the stereotypes associated with autism–the basis of people’s presuppositons about US. If I am distant or use stalling techniques while my brain catches up to what I just heard, it isn’t because I don’t like other people or because I didn’t deem the person speaking to me important enough to pay attention! It isn’t that I don’t care. It’s that my brain gets easily overwhelmed and I need to sort out how best to answer or behave. Being open about being autistic and (sometimes) able to discuss this idea with NT people means I can, hopefully, gradually shift their perceptions and assumptions about how autistic people react, think, and behave.
The conversation usually goes one of two ways:
The first:
Me: Yeah, I went to this [autism related thing].
Other person, joking: Ha! What if they mistook you for autistic? That would be so funny.
Me: Er, I presume they did, since I am.
Other person: No way. You can talk [or work or live independently or cook my own food].
Me: Officially diagnosed and everything*. Autism is a very broad spectrum of people with difficulties communicating and socializing typically, and we’re as individual as anyone else.
The second:
Me: Yeah, I went to this [autism related thing].
Other person, joking: Ha! What if they mistook you for autistic? That would be so funny.
Me: Er, I presume they did, since I am.
Other person: Oh. I would never have guessed. You are such a good example for people with autism.
Me: You know that’s really demeaning to everyone else with autism, right?
I am discomforting to people not familiar with social justice and disability rights. I am the worst sort of disabled person, because I have an invisible disability and I can fake being neurotypical, at least for a while. I am a secret spy for the disability community, come to infiltrate the temporarily able world at large with my sarcasm and socially unremarkable stims. I call them out on their language and attitudes and then have the audacity to reveal I have fooled them all along. This does not usually go over well (see above).
I have spent the past three months officially in this position, and it does not get less awkward.
So I thought I’d talk about ways I would prefer this conversation to go. Bear in mind that this is relevant only to conversations with me, as I cannot speak for the broader autism community, and autism is a special interest of mine, so I have a lot of facts ready to be provided on request.
Me: Yeah, I went to this [autism related thing].
Other person, joking: Ha! What if they mistook you for autistic? That would be so funny.
Me: Er, I presume they did, since I am.
Other person: Really? I didn’t know–sorry, didn’t mean to joke about a sensitive topic.
Me: It’s okay. There are a lot of adults like me on the spectrum, though, who may not be read as neurodivergent but really are. You might want to consider that before speaking.
This is sort of the baseline of what I would consider a good conversation on the topic. When someone comes out to you in some way, revealing a sexuality, gender ID, neurodivergence, what have you, that you didn’t previously know about and have been making fun of, it is a good thing to apologize. If you are making fun of it after knowing, then you’re an asshole.
Me: Yeah, I went to this [autism related thing].
Other person, joking: Ha! What if they mistook you for autistic? That would be so funny.
Me: Er, I presume they did, since I am.
Other person: You know, I wondered about that. You can be very [negative stereotype--usually "emotionally distant" or "stand-offish" for me].
Me: Well, that’s a stereotype–there are a lot associated with autism, many of which are only the tiniest bit true. I might seem stand-offish, but I’m really just trying to [listen/understand what's being said/ignore sensory imput/reduce my anxiety levels/work out when it's my turn to talk].
I think it’s a very human thing to relate what we abstractly know to personal situations. When I tell people I’m autistic, it probably makes sense to relate it to what my interlocutor knows about autism (usually precious little). While this pattern can be annoying, it gives us the opportunity for learning and growth–something I’m usually up for helping with.
Me: Yeah, I went to this [autism related thing].
Other person, joking: Ha! What if they mistook you for autistic? That would be so funny.
Me: Er, I presume they did, since I am.
Other person: Oh. I thought that was a thing kids have.
Me: Kids grow up, and a lot of the behaviours that people associate with autism are things kids on the spectrum do, but not all or even most adults on the spectrum do. We can learn and grow perfectly fine, we just do it atypically. I’m 26, so my experience is going to be different than that of a six year old.
Other person: That makes a lot of sense. What is autism like for you?
This is one of my favourites. The huge push for autism awareness has created a background awareness for a lot of people, but it’s awareness of the wrong sort. Simple statistics would reveal that more people on the spectrum are adults than not, but the focus is on what autism looks like in very young children. This obviously leads to the assumption that either you outgrow it, die from it, or you remain just like a three year old forever and ever. I’m not a little kid anymore! Even if I have to remind you of that, being aware that autism is different for each of us is appreciated.
Me: Yeah, I went to this [autism related thing].
Other person, joking: Ha! What if they mistook you for autistic? That would be so funny.
Me: Er, I presume they did, since I am.
Other person: Interesting. So [have you seen the new whatever/done something I'd spoken about previously/read this awesome book/something totally unrelated]?
Autism awareness will begin to shift into acceptance when I can tell someone that I’m autistic and it doesn’t make a damned bit of difference in how they interact with me.
*I’m a fan of self-diagnosis and was comfortably self-diagnosed for years. Had I not had the opportunity to sit an eval for free, I probably still would be self-diagnosed. Unfortunately, the sorts of people who insist I cannot be really autistic place a lot of weight on official labels.
I turn 26 tomorrow. It is also World Autism Day.
When I tell people I’m queer, it becomes a part of their idea of my identity. I mention my girlfriend, and a little light dings in their head to place me into the QUEER category of mental filing. They might be surprised or confused or alter how they interact with me (or not), and it might take a few further interactions for them to get that I mean queer in the broadest way and, yes, they can seriously still point out that cute boy and I’m not just humouring them when I agree.
Most people have a lexicon and background knowledge of what it means to be queer in some way. We broadly make up about 1 in 10, so there’s an awful lot of us out there being non cishet in some fashion. People recognize the concepts of bullying and gay-bashing, there are tv and movie characters who are out and proud, there are celebrities. I can say that I’m queer and it means something that we mutually understand, even if clarification might be needed on the details.
When I tell people I’m autistic, they don’t know quite how to react. Autism is kids in corners who headbang, boys who can’t speak or won’t speak, right? Autism isn’t adults who hold down steady jobs–including ones with customer service aspects!–and speak fluently (most of the time). The box in people’s heads is too small and ill-defined to fit me, and they are surprised, sometimes even angry.
Autism awareness isn’t inherently a bad idea, but the narrow scope of the spectrum that is promoted for awareness is very much dangerous and harmful for the rest of us. Autism, for me, means making enough of a single food to eat for a week, because making different food every day feels overwhelming. It means planning and rehearsing conversations, and then worrying when things don’t go as planned. It means auditory processing issues that leave me nodding at work and hoping I’ve timed it right, or not being able to hear over the sound of the tram. It means sensory issues that make it hard to hold my girlfriend’s hand sometimes. It means an encyclopedic knowledge of Kate Miller-Heidke lyrics. It means misunderstandings and hurt and bullying. And none of those are things you can see, if you don’t know what you’re looking for.
I want an autism awareness campaign that promotes actual awareness of the huge, wonderful spectrum that encompasses all of us. We each have our own strengths and weaknesses; what we share is an unusual way of experiencing the world. When I tell people I’m autistic, I want them to be able to easily fit me inside that mental box and understand that it means I might not be great at social cues and probably like routines, that I’m probably good with facts and rules, and that I probably have some sensory issues to work around.
Even more, I want people to understand that we–every single person–can inhabit more than one box. My mental filing system cross-indexes, fuckers, and yours can, too, with some practice. My being queer is not invalidated by autism, nor is autism invalidated by my being queer. It is often people who know that I’m queer who seem most surprised when I mention autism, because I am already in one minority group box in their heads.
Intersectionality is the concept of how different oppressions mix. Every person who belongs to multiple minority groups will experience it differently. For me, being queer, autistic, and genderqueer, it means erasure. I am allowed to be queer or autistic (gender doesn’t even cross most people’s minds, and since I’m not picky about pronouns it sometimes doesn’t come up).
I want to live in a world where it means acceptance. That starts with true awareness, not trite campaigns.
A memo to all of my coworkers, who will not, of course, read this, because if I told you what my website was I’d have to self-censor more and I’m super uninterested in doing that:
Yep, you heard me correctly, I’m autistic. See, autism is a vague group of behaviours and ways of processing the world we all share, and no two people on the spectrum are identical any more than any two people who are NT are identical.
You’ve seen me stimming, but apparently without knowing about autism you’d just thought I was fidgety. Ha! Trick’s on you: stimming IS just being fidgety for people on the spectrum. We stim for the same reasons any other person might tap their feet or shake their legs in a meeting: it provides sensory stimulation that helps us regulate our behaviour and emotions.
The thing about autism is that it makes me really awesome at some stuff, and really not awesome at other stuff. My particular, unique brand of autism makes me really good at learning scripts (“Please let me put this thermometer back under your tongue along the gumline.”) and repetitive actions like taking a blood sample. It also makes me really bad at some stuff I have to do at work, like multitasking and listening to multiple things at the same time. I’m sorry you were speaking to me and I walked away–I was busy hearing the faint harmony line in this song on the piped-in radio station.
Autism also makes me prone to these things that I’ve called a few different names in the past: panic attacks, tantrums, meltdowns. They happen when I’m feeling overwhelmed and without any control (and usually when I’m tired and/or hungry). I know my limits and my strengths, and ask that they be respected like any other person’s–even if they seem like they’re weird.
When you start requiring me to do multiple things I’m really bad at (like listening to two imputs and multitasking at the same time), there is a very strong chance I’m going to have to go cry somewhere and might scare off donors.
Can we please not make that happen? And can we please not laugh at me when I ask?
Thanks.
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