Feminist Aspie

Regeneration

(CONTENT NOTE: This post discusses abuse and harassment)

I’ve been thinking about something today and I thought I’d share; it’s a difficult subject for me to put into words, so apologies for the vagueness.

There’s nothing in the world quite like an autistic special interest. At my worst, it’s a safety net; at my best, it’s an easy go-to source of total, obsessive, geeky delight. For some people, they come and go quite quickly, but I have a couple that are definitely here for the long term; such a constant that I can barely conceive of a time before, never mind fully consider how they started.

It started with you.

It was yours, I was just being taken along for the ride, but we both know very well that fandom is contagious. Our Saturday nights were either cuddled up in front of the TV or frantically calling each other afterwards. In hindsight, I feel like there were signs I should have noticed, or shouldn’t have just presumed were okay: your assumption even in our teenage years that we’d just get married and live happily ever after exactly as you’d plan, and also the jealousy. You were jealous of male friends I had no romantic feelings for. Family friends much much older than me. Celebrity crushes. And yes, fictional characters. You didn’t like that something of yours had become ours. I suppose I just thought that was all just my own fault, for not being dedicated enough to the relationship.

But as your jokes became possessiveness, as your ideas became entitlement, as everything got scary, something else was happening too. I took that enthusiasm elsewhere;  it became my social crutch in a new unfamiliar place and it worked, it laid the foundations for many more friendships, it became my thing, in a big way. By the time the real awfulness started, it was tied to many things, places and people other than you. It was tied to me, and that was more than enough on its own. When I tried to leave and you refused to accept it, when I actually did leave and you soon refused to accept that, when I had little choice but to cut off contact altogether, when you kept trying anyway even months down the line, I lost mutual friends, I lost mutual hobbies, I lost the majority of my (already limited) social life at home to protect myself; and being autistic with rapidly rising anxiety levels related to you or otherwise, I still haven’t replaced that. But this was one thing I didn’t lose; it didn’t really even take a dent.

Over the last couple of years, like a boiling frog, I’ve gradually accepted my fear and my hypervigilance and my sense of total inadequacy as my new normal, only occasionally realising that this probably isn’t the case. Maybe I’ll never know how much of this was you and how much of it was other things entirely, but when I try and recount this little story to others, even in the vaguest, most sugar-coated of terms, it reminds me that my trauma is real.

Then, as well as everything else a special interest does, the primary obsession becomes hope. It demonstrates that I can take something of yours and make it mine; that something inextricably linked with a negative part of my past can be a source of, well, total obsessive geeky delight in my present, without as much of a second thought. It shows that maybe I’m more capable of dealing with stuff than I think.

My ability to heal is bigger on the inside.

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The Internet Is Real

(Sidenote: I’m really off schedule for the next couple of weeks, so this blog will be too. I’ll try not to abandon it totally!!)

The internet is real. For some reason, we seem to have a tendency to treat it like some frivolous side-life that’s totally separate from the “real” world, but that doesn’t make much sense. It might not be a physical space – I’m writing this in one place and now you’re reading it in another place entirely – but you’re still reading my words. The internet is a method of communication, and it is real just like phones, radio and TV are real. Like everything else in the world, it has good and bad aspects, and shouldn’t be dismissed as some Awful Silly Bad Pointless Thing just because it’s relatively new.

Online social interaction is real. Maybe it’s a sore point, but I will not believe that Skyping my family regularly when I’m away at university, or long deep Facebook conversations with a friend, or having ALL THE FEELINGS over a blog post and sharing it all over the place, is arbitrarily less valid than frantically apologising face-to-face to someone I’ll only ever meet once because sometimes “sorry” is the only word I can just make happen on the spot, because the latter takes place offline.

Online activism is real. Personally, it was (and is) online activism that educated me on feminism and other oppressions and led to involvement in offline activism too. However, online activism shouldn’t be seen as a gateway to “real” activism – many people have no or limited access to physical protests due to disability, financial reasons, abusive partners, abusive parents, institutionalisation, the list goes on. Online activism in and of itself is a form of communicating your opinions and information to others. This is useful, and it matters. In the same breath, this (real!) communication cannot be accessed, fully or at all, by many people for the same reasons listed above, and this is an issue that we need to take seriously.

Online harassment is real. Online harassment often includes personal details that could be used offline, and can sometimes be part of a more general harassment campaign by someone known to the victim, but online harassment itself is no less real. It might seem less real to the perpetrator, because it’s easy both to do and to distance yourself from offline, but to the person on the receiving end, it is all too real, and all too scary.

Online boundaries, such as blocking, are real – and demanding people stop setting that boundary because you feel entitled to their time and energy is really creepy.

“SJWs” are real people. Many of them wouldn’t even consider themselves that much into social justice, they’re just people from at least one marginalised group talking about their life and experiences in those groups. People talking about their own experiences isn’t an online fad, it’s people talking about their own experiences. They’re just given a slightly louder voice now, very slightly more equal to that of their oppressors.

Tumblr is simply a website on which (real!) people communicate, and every community of people has its problems. But often, when people are deriding “Tumblr” (even if they’re Tumblr users themselves), they really mean “people in marginalised groups I can just ignore offline due to structural privilege, talking about their own experiences”. It’s just that “Tumblr” (as well as being less of a mouthful) sounds less bad, because we tend to see the internet as less than real. “Tumblrina” means little more than “online and female” – think about why that’s supposed to be an insult.

Trigger warnings are real accommodations for real disabilities. Just because they’re not visible in the physical world, doesn’t mean they’re not real. Seriously, are we not past that yet?

Lastly, when people tell their stories online, this isn’t a reason to dismiss them as fake any more than if they’d opened up offline. Don’t act like you would totally have believed them if they’d used offline methods when, usually, these same people aren’t believed either.

The internet is real, and we should treat it as such.

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Wibbly-Wobbly Shutdowny-Wutdowny Stuff

This post is really long and unfocused and generally just a bit of a wreck, for reasons that will become apparent. Apologies in advance. So here’s how this week has gone.

Monday. Easter Monday, everything’s shut, I’m just in my room doing this week’s reading. It’s almost the end of term – and by “term” I mean “a period of exams, then a couple of weeks of just lectures, and then full term” so in practice I’ve been in Grown-Up Uni Student Living Away From Home mode (context: I’m currently on a year abroad in France) since the new year. I’m kinda crashing a little bit. I wonder how I’m supposed to manage Proper Adulthood if I can only just get myself through a couple of months away at a time. But I’m going home soon. Really not long now.

Tuesday. A couple of particularly stressful classes in the evening. Also, turns out the weather forecasts were right. The sun came out. And stayed out. Fuck. Fuck. Here we go again.

Wednesday. I get my essay done on time, but only because several lectures yesterday and today were cancelled. I’ve just had absolutely no energy recently. But regardless, it’s all worked out in the end. I go to the class, followed by a short lecture. I was going to clean my room when I got back, and then didn’t. It’s really bright and warm outside, and it’s freaking me out, mainly just worrying about the months to come rather than the present. It’s all over the internet, too; it feels like an addition to my general sense of “I’m doing all of life wrong in comparison to these people”. But hey, at least I’ve got this week’s deadlines out of the way.

Thursday. A morning spent trying to make myself clean my room and ending up just repeatedly watching the same YouTube videos over and over, vaguely looking at Twitter, and trying to work out where all my energy’s gone. Eventually, a friend from uni back home floats the idea of “weather” over Facebook. I realise he’s probably right, feel horrible about the sheer inevitability of impending summer, but this ends up motivating me into a prove-him-wrong/go-into-denial burst of productivity. I make a playlist, thoroughly clean my room, spend a little while agonising (by my standards) over what to wear because now I have to actually go out there, and head off to lectures feeling quite proud of myself. The area around the university building is really busy, probably because it’s opposite a park, but it wasn’t the horrendous journey I’d prepared myself for. While I’m at uni, someone asks me (in French) to direct them to the toilets, and I only really manage to do so with gestures and pointing. I spend the rest of the lecture worrying about how I can understand this language really well now but often can’t speak it totally off the cuff and unscripted, and it feeds into that fear of How I’m Going To Do Life that I still haven’t managed to shake yet. I’m startled by the traffic noise on the way home; I don’t know if it’s got busier since it’s got warmer, or if I’m just more sensitive. I get some shopping on the way in, I have dinner, I briefly go to a friend’s room and we mainly just talk about uni. I come back to my room. I’m fine. Just tired, and too bloody anxious to make myself go to bed because then tomorrow will happen and I don’t know if I can deal with tomorrow. Friend back home eventually talks me through getting into bed and watching some YouTube videos for a bit. It sort of works.

Friday. Still wake up before my alarm – thanks, brain. And I don’t really feel any better for having slept. Friday’s quite a long day, but regardless, I’m feeling really anxious right now and think following a structured routine at uni will make me feel better, as it briefly did yesterday. It’s warm out, and bright, and crowded, and there are loud motorbikes everywhere. I arrive at the lecture hall and it takes me a few minutes to calm down; eventually, I send out my weekly Snapchat story speculating over whether or not this particular lecturer will even turn up this week (he does). My head is killing me, I’m feeling really drained and anxious and awful and want to curl up somewhere dark and cool and quiet and not have to worry about All The Things. In the break, I refill my water bottle. It doesn’t help. I don’t get much of the second half of the lecture at all; at some point I think “I can’t focus anyway, I might as well just go back after this one and try and sleep”. I get myself back to my room with a combination of London Grammar, muttering to myself and miracle power; I’m thankful I’m on my own and don’t have to explain myself to people, because saying meaningful things verbally wouldn’t happen. I’m in. Window open. Shutters all the way down. Pyjamas. Bed. Right hand scrambles around the table for earphones. YouTube rain noise. Safe. Safe.

I open my eyes. I try and think back to earlier. I didn’t realise until now just how overloaded I was. I’d properly, properly shut down. Did I fall asleep or pass out? Is there a difference? I feel rested, anyway. I’m not going to make the other lecture now, and the idea of going back out there is unthinkable, but I can probably start the next lot of reading. I do, eventually. I encounter a photocopying issue, go to ask some friends here, and then realise I can’t because they (doing different options) think I’m still in a lecture, and I don’t want to have to explain myself, so I ignore it. I’m productive that evening. I get some reading done. I accidentally start a hashtag, and get ridiculously excited when other people begin to use it. I Skype my parents, and put on a half-convincing Everything Is Fine act. I post a relevant article on the Facebook group the people here set up for ourselves. I have a Facebook conversation with a friend back home about the pressure to pass for neurotypical, and how impossible the world seems right now, and it culminates in a full-blown crying/panicking session. I suppose I sleep at some point.

Saturday. It’s overcast – though apparently not for long – and none of the vaguely-planned socialising ideas have come to fruition. Thank goodness. I still can’t do all of life, but I can do today. Just think about today. I make slow but steady progress with reading. I do some file-backing-up. I vaguely plan out a blog post (entirely separate from this one) and can’t motivate myself to write it up fully. I realise I need to do some shopping, and greatly underestimate how silly an idea it is for me, in these circumstances, to attempt the supermarket on a Saturday afternoon. On the way there, someone I’ve only met a couple of times stops to ask me (in English) where a mutual friend’s room was, and it startles me because I can’t place his face and can only blurt out a room number. The supermarket was, at least, survived. A car beeps at me on the way back, the only logical explanation being that I was existing outside whilst female, the noise startles me and I run off. When I get back to my room, I message the mutual friend to finally establish who the guy who spoke to me was, and that means vaguely admitting how I’m feeling, so it took several drafts. Eventually I do some more reading. I go on Tumblr for a bit. I open WordPress, intending just to vent and make a quick point about shutdowns. I write, I write, I write. I write for too long. I think I really need some sleep.


Okay, that really wasn’t supposed to go on for that long. Sorry. Anyway, there is a point to all that, which is that during sensory overload, before, after a shutdown or even a meltdown, sometimes even during, abilities vary. I might have typing spoons but not verbal spoons, work spoons but not people spoons, or the opposite. This also varies from person to person, always depending on a million and one other factors because we’re multi-faceted human beings. I often find myself beating myself up about this, or feeling like I have to continue an Everything Is Fine act, because if I did this one productive thing or seemed fine when communicating with someone earlier, what will they think if I’m just suddenly not okay now? It’s a habit I need to break.

To totally butcher a Doctor Who quote, neurotypical people assume that shutdowns are a strict progression of in to out, but actually, from an autistic viewpoint, it’s more like a big ball of wibbly-wobbly… shutdowny-wutdowny… stuff.

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Autism Acceptance 101: What’s The Big Deal?

The previous post in this series, “Functioning Labels 101: What’s The Big Deal?” can be found here. Once I’ve established that I actually will write a regular series of these posts and not just abandon the idea, I’ll create a tag.

Today, 2nd April, is the UN’s annual World Autism Awareness Day; by extension, the whole of April is Autism Awareness Month – or, as you may have heard it being called by autistic activists and our allies, Autism Acceptance Month. You may also have noticed that many autistic people have reacted against certain “Autism Awareness” campaigns. So, what are the problems with Autism Awareness Month as it currently stands? Why “acceptance”? What can you do this April to help autistic people in a meaningful way? Welcome to Autism Acceptance 101.

Surely more autism awareness can only be a good thing?
Not if the only things being brought to public awareness are misinformation, stereotypes, and fear. Many autism awareness campaigns and events, notably the popular Light It Up Blue, are run by Autism Speaks, a hate group that sees autism as a tragic epidemic that takes away the “real” (read: neurotypical) children, and carry out research to eradicate us. Here is a well-known masterpost by Tumblr’s Goldenheartedrose outlining the ways in which Autism Speaks harms autistic people. There are many. Yet Autism Speaks continues to be the most popular autism organisation in the USA if not the world, which means April often serves only as extra amplification for their hatred, sometimes dreaded by autistic people ourselves.

But the criticism of autism awareness campaigns isn’t just limited to Autism Speaks – why is that?
Basically, April amplifies the autism campaigns and narratives that happen normally – the good and the bad. Things to avoid include cure-based rhetoric, equating “autism” to “a burden placed on neurotypical people who are forced to deal with autistic people”, harmful compliance-based therapies, functioning labels, that sort of thing. There’s also the issue that many autism awareness campaigns focus exclusively on children, or more specifically on young white boys, alienating everybody else. Finally, consider accessibility; if your autism awareness event passively excludes autistic people by not taking into account issues like sensory differences, we’re going to wonder who it really benefits.

Why is your immediate reaction to the innocuous “like and share for autism awareness” Facebook pictures just eye-rolling?
Here I’m referring to the picture memes which contain no actual information whatsoever, just “like and share for autism awareness” or “like and share if you know/love someone with autism” (because everyone knows there are no actual autistic people on Facebook… /sarcasm). They seem pretty harmless – at least they’re not spreading misinformation. But the former is basically “hey everyone, autism exists!” which doesn’t solve anything if the majority of information immediately available to those who see it and want to know more is Autism Speaks or similar, and the latter is basically “look everyone, I know one of these people, I’m so great!” which just feeds into the “burden on neurotypicals who have to deal with us” narrative. Mainly, this sort of thing (with no additional information around it) is just self-congratulatory neurotypicals who click “like” and “share” and then expect an ally cookie whilst they then go about the rest of their day participating in the ableist world without a second thought.

Why “acceptance”? What’s the difference?
In recent years, the Autistic Self Advocacy Network and other autistic-led organisations have set up Autism Acceptance Month in order to directly combat the harmful “awareness” campaigns. This includes events designed to specifically counter Light It Up Blue, such as the #WalkInRed campaign. These campaigns use “Autism Acceptance” to signify that they do not view autism as a tragic burden to be eradicated, but a neurotype and a group of people who want to be accepted for who we are, as opposed to “awareness” which has so often just been amplified misinformation. It’s a way of explicitly distancing these campaigns from the “awareness” brand which many autistic people are now wary of.

But how can people accept something if they’re not even aware of it yet?
Probably more easily than accepting something if they’ve already developed strong but false beliefs about it, to be honest.

So should I reject everything with the “awareness” label?
Not necessarily – many autistic people and allies (often in addition to supporting autism acceptance campaigns) are preferring to reclaim autism awareness, especially by dispelling myths and misconceptions and spreading acceptance guides via autism awareness hashtags on Twitter, so that they’re seen by the wider audience “autism awareness” brings. In particular, I want to draw your attention to Quarridors‘ tweets today under #WAAD2015, providing some simple but important ways to make the world more accessible to autistic people.

What can I do this April to actually help autistic people?

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