Dialogue on Access, Autism, and Being White - Part I #WorldAutismDay
You know what’s weird about being white? You don’t know that you’re white growing up. Kids of color, so I am told, are acutely aware of the fact that they are not white from a very early age. I wasn’t. I had no idea that I was white until I was in college. As a kid, if you’d asked me if I was white or not, I would have said no, because I was a very literal kid, and probably identified as ‘pinky-beige with brown flecks.’
I was born white. I was also born disabled. But, even though one was as readily apparent as the other, it took me decades to get a proper diagnosis, decades to realize that my experiences as a white person were drastically different than those of POC.
When I was five months old, my mother took me to the doctor and said ‘there is something wrong with this baby.’ ‘No, there isn’t,’ the doctor dismissed her. ‘Yes, there is.’ She insisted. ‘My other babies smiled and laughed and made eye contact. This baby doesn’t. This baby is weird.’
Truer words have never been spoken. I was weird. I was a weird baby, a weird toddler, a weird kid. I entered the special-ed system at three and a half, but it would take until I was 25 and sought out a neurologist on my own that I finally got a definitive answer: I have autism. And – some other stuff. Want the full list? No, you don’t, so here’s a partial. Aspergers syndrome/autism spectrum disorder. Non-verbal learning disability. Depression, anxiety, OCD, and PTSD. Oh, and in the past 1.5 years, a back injury that has led to chronic pain.
At eighteen, I left my small suburban town for college in a small, liberal city, and started to learn just how much I hadn’t learned. I remember picking up a book on the Boston busing riots in the 1970’s and confronting my history professor about it, enraged. Why had we learned that racism was a thing in the past, that the civil rights movement solved it (in the south, because the north never had racism) in the 1960’s? This questions led to more. Why had I never heard of the history of slavery in New England? Why had I never questioned why there were so few POC in my town? Why was there no ESOL program in my town? Why were they lumped in with the special needs kids? Why didn’t I know that there were happy, gay adults in the world? Oh my god – I was white. Why the heck didn’t I know this?
Sometime around this time, a professor asked us all to go around the room and say what culture we were from. “I don’t know,” I replied. We weren’t Mexican or Jewish or African-American. “I think we’re white.”
The professor, a black woman, was not pleased by this answer. “Ask your parents what your culture is,” she said, and so the next weekend when I went home, I dutifully did. “I think we’re white?” my mother answered.
Today, I’d say that my ancestral background is Northern European (Ireland/Germany/ Scandinavian) and that I come from a long line of conservative WASPS who liked to drink a lot. My parents broke this pattern during their hippie days in the 1960’s, but as a result of this break, I still don’t know the names of anyone in my family tree beyond my grandparents and so I feel rather disconnected to the idea of being a cultural person as a whole. In retrospect, though, WASP culture is a culture, and I was raised in the thick of it. I was raised to not air my dirty laundry in public, to dress up for the country club dinners with my grandparents in itchy taffeta dresses with lace collars, to ignore the fact that everyone in my family and every one of their friends was white, straight and cis, and to above all, never make noise. Never draw attention to yourself. Never show emotions in public.
Except that, well, I’m autistic. And so that didn’t go so well.
You want to know something else weird? The autism parent community is overwhelmingly white. Check out who’s written books, who’s on the speaker circuit, who starts nonprofits: white, white, white, with a side of Jewish. Very few African-Americans, no gay people, no Hispanics or Asians, nobody whose first language isn’t English. Yet the autistic community itself? Diverse as heck. The same with the disability community. My best disabled friends come in every shade of the human rainbow and are the type where you are expected to ask what their pronoun is upon meeting them. They are just as likely to be queer as straight, to be poly as – whatever non-poly is. They are amazing, they are awesome, and contrary to all that stuff about how autism is so much more common in males, they are male, female, and everything in between. They do not defy autism because autism is a part of them, autism defines them, but they do defy expectations and demand equity in conversations about autism.
Unfortunately, the more activist work I do, the less intersectionality I see between, for example, the movement for black lives and the movement for disabled lives, or immigrants and disabled people, or Pride and disabled people. Even though disabled people come from every walk of life, we are not always accommodated when it comes to interacting in affiliate groups. And when we are, it is most likely because we can accommodate ourselves or be accommodated easily, aka, people with physical disabilities. ‘Real’ disabled people. People who can follow the conversation no matter how fast it goes.
I taught a little class last spring on employment. There were six participants, all of them white, all of them autistic, and only one had ever heard of the Black Lives Matter movement. I almost cried, both in recognition of their ignorance and in reflection that I was equally ignorant until I decided to start educating myself.
The fact is, people with intellectual and developmental disabilities are left out of social justice conversations as a matter of course. It is a cycle: people with ID/DD do not seek out these groups because they do not know they exist, and they are often kept sheltered in their homes or by their families. So social justice groups do not develop materials or ways to include them, because nobody shows up who needs to be accommodated. And if someone, like me, should show up, we have so much trouble understanding that we give up on the subject and go home.
I have read many things about the Black Lives Matter movement, and one thing that is emphasized is that white people should not be the center of attention. We should not be asking things of black people, we should be educating ourselves and giving them help. As a direct result of this message, I do not go to demonstrations or education events, because I do not want to be that burdensome, pesky white woman who diverts attention away from the real issues. I cannot go to these events without someone to help me understand, and white allies do not want to take the time to explain things to me when they could be educating someone who really needs it, or doing a job that really needs to be done.
If you have ever sensed a thread of intellectual elitism among social justice people, you are not the only one. Looking at me, people assume things. They assume I have a college degree (true) and that I am employed (not true) and that I am a gentrifier (I’ve been told that I do not make enough money to qualify for this label), that I have strong family support (true for my mother) and that I grew up privileged (true in some ways, not true in others.) Until I disclose my disability, in which case, an awful lot of the time, they assume that I’m stupid (not true, but took me over 30 years to figure this out.) And they talk to me like I’m three years old.
One of the things that my autistic, learning-disabled brain struggles with is what I call the 3-second-glitch. It takes me just a couple more seconds than it takes other people to follow what is going on and to process their language. I have a huge amount of trouble with any kind of accent as well, and metaphors and sarcasm go right over my head. The problem this creates at many social justice events is that people are so excited about X, Y, and Z, that they talk reallyreallyreally fast to show their enthusiasm.
I am incredibly privileged. I have education and the means to understand many complex societal and historical problems within the world. However, my constant pain and mental health struggles mean that I am not always operating at my full intellectual capacity, especially at an event where I do not know many people. And I want to understand what is going on, desperately. I want to participate. But when I mix up pronouns, when I struggle to get words out, when I absent-mindedly engage in self-injury in public……….then people do not see me, the learner who yearns for education about everything. They just see a disabled person who doesn’t understand, and that’s okay with them. Because the people who matter – those without disabilities – do understand, and isn’t that what counts?
I don’t think it is. I think that it is time to bring people with ID/DD into the conversation more, because we have a lot to contribute. I think it is time that we stopped brushing people off because they are ‘weird’ and tried instead to accommodate them. I must believe that neurodiverse people can and will be a significant part of the revolution because the revolution impacts us, too. Our entire world is changing at a rapid pace, and nobody should be left behind or left out simply because they do not understand.