Nothing About Us Without ALL of Us. That Means Autistics of Colour, Too.
by Memoirs Of A Dead Woman
First things first: I suggest that Steven Shapin find a new profession.
His lack of journalistic integrity in his recent New Yorker article, “Seeing the Spectrum“, is painfully evident. While reporting about John Donvan and Caren Zucker’s book In a Different Key: The Story of Autism, there is a clear failure to recognise just how problematic this book is. All Shapin has managed to do in almost 3900 words is perpetuate the same old tired and horrible myths about autistic people, including:
- that we need to be cured;
- that abuse is acceptable treatment (READ: ABA);
- that we are rigid, inflexible, emotionless beings; and,
- that our own communication and testimonies are unreliable.
Shortly after the article’s appearance, protests on social media began by autistic people. Some of them used the hashtag #notblackmirrors, in reference to a quote from the article:
“It’s a searing experience to have a child who doesn’t talk, who doesn’t want to be touched, who self-harms, who demands a regularity and an order that parents can’t supply, whose eyes are not windows to their souls but black mirrors.”
Thinking it would be helpful, I also posted a couple of selfies — one on Facebook, one on Twitter — adding my voice to the #notblackmirrors protest. Trouble is, this wasn’t probably the most well thought-out protest. Not too long after my own tweet, I saw this post from Radical Neurodivergence Speaking on Facebook:
“SHOCKINGLY ENOUGH Autistic PoC exist. Many of us have extremely dark eyes (mine are on the light side of ‘dark’ & if you know me in person AND look at eyes you know…yeah they can be mistaken as such). I can think of a dozen Autistic people off the top of my head that have basically-black eyes.”
This was a case of me not thinking before I posted and tweeted: not considering something very important. While #notblackmirrors may have been well-intentioned, it does leave out a large percentage of autistic people of colour. Sometimes, my own eyes are so dark they’re almost black. This was true for my late father, who was African-American and autistic, and well as my future husband’s late father, who was South Asian (Indian) and also autistic. Additionally, I know several autistic people of colour whose eyes are black or almost black.
Radical Neurodivergence Speaking ended that post by saying “Do better. Please.”
And they’re absolutely right.
A few artifacts surrounding all of this are very telling, and point to additional larger issues. Because the link above is to the Do Not Link version of that heinous article, the original contents and artwork are still visible. Included is an illustration of what seems to be a large image of a light-skinned male child, in front of which there is scaffolding with small groups of people standing on it. Of course, my mind immediately flashes to the often perpetuated image of autistic people as, as someone else on Facebook put it (and my apologies to the original commentator, as I can’t remember your name), “eight year-old white boys obsessed with trains and airplanes.”
Which, of course, leaves out ALL autistic adults. And autistic people of colour. Finally, it leaves out autistic women and nonbinary autistics.
When I used to blog on Woman With Asperger’s, I frequently mentioned lower diagnosis rates for autistic women and girls, and also lower rates of diagnosis, later diagnoses, and lack of access to services for autistic people of colour. For me, these were issues very close to home. I’m a multiracial person of Black ancestry, and until late 2014 I identified as female (the story behind that is a different post for a different time). And I was not diagnosed until age 34. To be fair, I grew up in a dysfunctional family of origin: so my late diagnosis may have saved me. Had I been identified autistic as a teenager, it is very likely my family would have institutionalized me, or worse. I might not be sitting here writing this post right now. I spent nearly all of my childhood trying to pass for allistic, once I figured out that I was not the so-called “normal” that everyone else seemed to be. My chameleon circuit worked so well it almost killed me.
My set of problems are shared by some autistics. There are also issues of abuse, exclusion and restraint, our own testimonies being seen as unreliable, lack of access to needed supports and services, and so forth. However, for some of us — particularly autistics of colour — there can also be issues of life and death. Autistic people from all backgrounds have been murdered, but autistic people of colour face institutionalized racism which increases our chances of facing wrongful arrest and violence. One need only think of the cases of Neli Latson and Kayleb Moon-Robinson — both within the last two years — as examples.
Nothing about us without us. That phrase has often been used to address policy made on us autistic people without our input, a lack of autistic voices in media coverage about us, and funds raised without any of the money directly benefiting us as well as harmful, ableist pity-based messages about us used to raise those funds.
That statement should be amended to read: Nothing about us without ALL of us. Just as mainstream LBGTQIA+ organisations have ignored the needs of queer people of colour, autistic activism should strive not to make the same mistakes. It’s bad enough that mainstream media whitewashes autism. Autistic activism should be careful not to (whether purposefully or inadvertently) do the same.
My words are meant out of love for fellow autistic activists. Shapin, Autism Speaks, et. al: no love for you.
Sorry not sorry.