After reading about the possibilities of pre-natal autism screens on fetuses — and being deeply troubled by the glow of the Coke machine on the neon sign pointing to eugenics — I tweet-threaded a plea to expecting parents. Transcript follows. (TWs: abuse, ableism, judgment.)
First, a screenshot of the cityofautism.com front page:
And my response, via the site’s contact form:
Greetings and felicitations, City of Autism. I’m an autistic adult and real-life superhero. I feel that I must inform you that you have rubbed an awful lot of fur the wrong way among the autistic community on social media.
There’s a chronic problem with the way autism is being represented, by everyone from parents to psychologists, even to so-called “charities” which purport to be supporters of autists but are merely making the problem worse. The problem is this: None of these entities have even tried to talk to, let alone listen to, autistic adults. Please do not dismiss this message on the misconception that autistic people are unable to communicate. The fact of the matter is, autistic people are perfectly capable of communicating; we just do it a little differently, and the person on the receiving end has to have the patience to understand *us.* It’s an ongoing struggle, but every minute of every day, we support each other through social media and in real-world groups, discussing the uncountable ways that society gets autism all wrong (often because too many misrepresentations, misconceptions, and misapprehensions are being fed to them by non-autistic people who have never bothered to converse with autistic people). More importantly, we discuss ways to set the record straight no matter how much time it’s liable to take.
I and a lot of my fellow autists would be more than pleased to enlighten you further if you want to learn the exact reasons why the world can be such a difficult place for us. But at the end of the day, we don’t want to be regarded as zoo specimens any longer; we want to be regarded as people. We are human beings. We have important contributions to make to the world, and we want to be treated as such.
Therefore I urge you to engage with autistic activists on social media — there are many hundreds of us on Twitter and Facebook especially — so that you can learn more about us and the reasonably successful lives we lead. But please, please, please, hear what we have to say, and limit what you say *about* us before you’ve spoken *with* us. We all have stories about our autistic lives and our ongoing battle to be accepted as part of the human race, and I think you will find it quite enlightening.
(TW’s: ABA, abuse, bullying, bad representation)
It’s a lovely Northeast winter morning with snow falling so heavily I can’t even see my paw in front of my face. XD So I sign on to Twitter and I find Autism Speaks-for-itself and Caudwell Children once again dodging challenges from autists and contradicting their own mission statements.
But I’ve come to realize recently that I’ve got to do more with this blog than try to discredit individuals, since that hardly seems like the superheroic thing to do. I will say, however, that a member of the Autism Speaks-for-itself royal family tweeted the following: “Autism more a medical condition than personality disorder”.
So I pounced on her as politely as I could manage. And now, permit me to rebut.
Yes, you can add this post to the infinite acres of blogs, tweets, and postings by actually autistic activists railing against Autism Speaks. But please, read the entire entry first, because I think the world needs to read this one.
I haven’t been on Twitter much lately, for reasons. Chief among them, I perceive that I’ve become something of an outcast from the RLSH network, having been written off as a “keyboard warrior” because of my attempts at online activism. Which itself is going nowhere — Twitter has shadowbanned me probably three or four times in recent memory, and even when they condescend to make my posts visible again, I’ve gotten upbraided even by some of my closer RLSH friends for what they call “angry tweeting.” (Even though there are some politically-charged RLSHs on Twitter who make me look sweet and lovable by comparison.)
So what’s the point? I hate wasting time, and I’ve probably wasted more of it this year trying to spread the message of autism acceptance than anything else I’ve ever done in my life. I am, however, going to keep plugging at this blog as long as I can, even though its own days may be numbered.
Mind you, it’s not my own discouragement that’s apt to kill this blog eventually — it’s that dreaded news clickbait known as “Net Neutrality.” There’s going to be another vote on it next week. Considering every other violation of privacy that’s sailed clear through the U.S. Congress with total disregard for the wishes of its constituents (e.g. the greenlight for ISPs to share an individual’s browsing history with advertisers), net neutrality is probably the most crucial freedom that’s afforded to disability-rights activists. Can’t you imagine how fast disability-rights blogs and Twitter accounts will be blocked, shut down, and forcibly shuttered if net neutrality gets buried in the litter box?
I’m not disguising it. Yes, I am pleading for my fellow Americans to raise holy hell with your representatives to keep the net neutral. It’s either that, or see ignorance run wild across the face of the earth as DRAs are no longer allowed to spread their message, just because the government and/or some large corporation might find it inconvenient.
It’s probably going to happen nevertheless. If it does, perhaps I’ll just trigger another sign of the times, go out and break the speed limit, get pulled over, and let the cop(s) blow my head off. It’s happening everywhere else, why not here? And why not to someone who’s just going to find herself a target of disability cleansing otherwise?
Let’s imagine for a moment that Earth is being invaded by a hostile alien race. (Why, yes, my curiosity was stirred by that needle-like asteroid that just went hurtling across our solar system.)
(TRIGGER WARNING: ABA)
I’ve been meaning to do this post up for a somewhat longer while than intended. But last week, we lost a truly amazing human being, whose passing left a gaping abyss in the soul of the realm of music. Gord Downie was one of the most inspirational singer-songwriters who ever walked the earth, and if his likes should ever be seen again, let’s please step up brain-cancer research — for it was to brain cancer that he succumbed after almost two years, without giving up on his creating, his performing, or his social activism. I have never cried over the loss of a performing artist before, but I couldn’t seem to tweet about him without losing my shit.
Gord Downie was Canadian, the front man of a stage-scorching rock band called The Tragically Hip. In a few songs — with the band, and solo — he included a handful of lyrics in French. Was he bilingual? Beats me; his private life was none of my damn business. But even if he didn’t speak fluent French, he spoke two other languages effortlessly — those of poetry and music. He’s been lauded as the “poet laureate” of Canada with his profound lyrics and his intimate knowledge of some of the darker corners of Canadian history. If you weren’t as familiar with that subject, you probably could only take the wildest of guesses what the hell he was singing about with some of those cryptic lines. For much of his career, he sang in English, Poet, and Musician all at the same time; and if you didn’t understand his language, it made absolutely no sense — unless you decided you wanted to learn more.
It is of language, and learning it, that I curl up to write this evening.
Does anyone remember reading “The Scarlet Letter” in high school (or any other time for that matter)? Well, if you do, you surely remember that the book’s eponym was the letter “A”, meaning “Adultery”, and that the protagonist was forced to wear it everywhere she went as punishment for committing such. But as the book wore on (and on… and on), the “A” lent itself to one or two other meanings, such as “Able” and “Affection”. And I’ve just recently gotten to thinking…