Hello, internalized ableism
Others have written extensively on the issue of privileging paper diagnoses and marginalizing self-identified people, most famously in the letter "Who Can Call Themselves Autistic?" penned more than ten years ago by some of the greats in the autistic movement. I won't linger long on that topic of conversation.
I wanted to preface this post with that caveat on diagnosis and self-identification because I'm starting my story here (and I'm unapologetically autistic in the way this story unwinds, which is to say, it's both extremely linear, logical, and intuitive all at once, and not at all):
I received a paper diagnosis through a neuropsychological evaluation when I was in eighth grade. (At the time the label used in my evaluation was "Asperger's" but I identify myself as autistic because I believe in creating solidarity among autistic people rather than reinforcing artificial divisions between autistic people based on ableist ideas about which types of autistic people are acceptable or desirable versus not.)
From the time I was a small child, I never quite fit in with other children my own age, whether with other Chinese American children or with children in my classes or with children in my childhood church. I was painfully slow on the uptake when figuring out that people I thought were nice to me or were my friends were actually treating me like shit.
But somewhere between the time I received the autistic diagnosis and now, I had fallen into a kind of complacency in my young adulthood (I'm in law school now) as a disability activist about my own disabled identity and experiences. From believing that autism was something to be ashamed of (and that would result in my classmates bullying me even more if they found out) to actively organizing protests against organizations like Autism Speaks for eugenicist cure rhetoric, I've now settled comfortably into a role as a Professional Activist TM.
(What is a career activist anyway? How horrifically has the nonprofit industrial complex injected social movements with white supremacist capitalism?)
Part of my work nowadays brings me across the United States to speak at colleges and conferences and with all sorts of other groups interested in anti-ableism training. I talk about privilege a lot and one of the types of privilege that I discuss is passing privilege -- maybe better termed "being less fucked." I talk about hidden disabilities versus apparent disabilities, and how sometimes, a particular person might be apparently disabled but at other times they're not. (Someone who uses a wheelchair might not be apparently disabled while lying in bed. Someone autistic might not be apparently disabled in a still photograph taken when they weren't stimming. These are still maybes and don't account for more complicated experiences.)
I use myself as an example, especially in casual conversation. I tell people that I generally pass for neurotypical and that to most people, especially those who aren't terribly familiar with autistic people, my disabilities are fairly hidden.
(Maybe sometimes I'm giving this long introduction or caveat for my own existence as a way of trying to navigate the double bind we're often placed into as disabled people -- if you're "high-functioning" you can't speak for the really disabled people; if you're "low-functioning," those must not be your ideas at all! -- and avoid the accusations that I'm a not-really-disabled person profiting off of "really" disabled people.)
But lately, I'm coming face to face with the realization that I'm wrong about whether, to what extent, and how often I pass for neurotypical. I'm realizing that even if I don't identify myself as disabled or autistic, other people still read me as "different" and that as much as my gender identity, (a)sexuality, and race might contribute to that perception, my disability is an inextricable part of the equation. Years after receiving a paper diagnosis and winding my way through layer after layer of educational privilege where I thought I might be perceived as somewhat weird but not fundamentally deviant, I find that other people still intuitively peg me as some kind of neurodivergent (whether or not they know that word) and often attach negative aspersions to that perception.
And frankly, that's scary.
It's scary, sure, because it means I could face discrimination I didn't think I might have to deal with (being relatively less fucked if able to pass for not-disabled), because it means I could be read more easily as a target for potential violence (given the rates of all forms of violence against cognitively and developmentally disabled people, especially those read as feminine or women), because it means I am more visible than I realized and visibility itself also means violence.
But it's also scary because I'm becoming intimately acquainted with my own internalized ableism in all the little dark crevices in corners of my mind I forgot existed and haven't thought to check, and I can't shake the immediate thoughts that I should try harder not to seem so autistic in public or else what am I doing wrong that other people can tell? Essentially, I'm finding that my reactions to this ongoing realization of just how much my neurodivergence shows are that there is something wrong and that I should feel ashamed and self-conscious if (non-autistic) people can tell that I'm autistic. For all the time I've spent in conversation with other disabled people -- and autistic people in particular -- about ableism and neurodivergence and neurodiversity and radical disability, I have never stamped it all out.
We build cultures of perfection in activist spaces. This is not unique to autistic or disabled spaces. Purity politics pervade activist and social justice spaces. Call-out culture demands that in the rush to create safe spaces, we shut people out and throw them away if they fuck up once. (This is not about forgiving privileged people for repeatedly entitled or outright abusive behavior targeting marginalized people. This is about disposability politics.) We're constantly competing for limited resources ("likes" and "reblogs" and "retweets," all the twenty-first century trappings of social capital -- and that word "capital" is critically important), trying to be better activists, always on, always saying the right thing. We give pithy acknowledgements of privilege and past ignorance/fuck-ups, but functionally act as though in the present time, we no longer fuck up because now we're Educated. That it is our duty to jump down each other's throats at the slightest mistake or misphrasing -- ignoring the completely classist, racist, and ableist implications of expecting people to always say the right thing and never accidentally say the wrong thing or not know the correct terms.
All we've done is replicated the painful violence of white supremacist, (cis-hetero) patriarchal capitalism in supposedly revolutionary, transformative, liberatory spaces.
All we've done is take the practices we find harmful and do the exact same things to each other.
We've created activist cultures where it is not acceptable to talk about ongoing struggles with internalized ableism, yet we expect autistic and other disabled people doing disability movement work to be politically perfect (that is, to have no traces anymore of any internalized ableism.)
We have created a mirror image of the "overcoming" supercrip/inspoporn narrative we all hate:
Ambika was diagnosed with autism, but she went to social skills class and occupational therapy and tried so very hard to succeed despite autism and now she's in medical school and has overcome all of the autism-related deficits that predicted she would never make it this far!
Now we have a different "overcoming" story and it's just as toxic:
Ayodele was an autistic teenager when he first met autistic neurodiversity activists, and then he started going to anti-Autism Speaks protests and local ASAN chapter meetings, and writing his own blog on Tumblr and now he's working for a national disability rights organization and has overcome all of his internalized ableism from being in the self-contained special ed classroom!
Yet no one seems to notice the painful irony of exactly how similar these narratives are -- though we condemn one and exalt the other.
So where are our spaces where we can heal not just from the trauma inflicted on us by others but also from the ongoing trauma we inflict on ourselves? Where can we be vulnerable, truly vulnerable, without fearing the consequences of enforced ostracism from "safe spaces" that privilege an ableist facade of having-it-together and overcoming-internalized-oppression?
So here I am, feeling very much at the edge and isolated from most autistic spaces these days, trying to reach my tendrils through dark corners of webspace in the hopes of reaching those of you who, like me, are struggling to uproot our own internalized ableism while maintaining the public facade of impenetrability.
Hello, internalized ableism. I don't miss you and I don't like you very much at all.
Hello, internalized ableism. You seem to be very comfortable inside my mind, but I think it's time for you to start packing and moving out -- for good.
Hello, internalized ableism. You know me far, far too well. You're hardly a stranger here.
Hello, internalized ableism. You're living in my brain and I can't ignore your presence anymore.