An interview with Julia Bascom.
Posted Sep 18, 2012
Julia Bascom is an autistic woman, writer, and self-advocate. She is the director of the video project on Autistic Culture titled "Loud Hands" and the author of the blog "JustStimming." She let me ask her the following questions so that she could explain what we need to understand about autism and other neurological differences, in order to treat people with respect.
Julia, I first learned of you by reading your unforgettable essay "Quiet Hands." Have you gotten a lot of responses to that essay?
I've written a little bit about the responses to Quiet Hands here. It's been almost a year since I wrote that essay, and I still regularly get emails from parents, teachers, and therapists telling me that they've read it, brought it to an IEP meeting, and changed the way they do things. It's...it never occurred to me that just by putting words on a page, I could make someone else more safe. But that's what's happened.
One amazing thing about your writing is how easy it is to relate to- I've noticed this with other writers who describe themselves as autistic- their writing does not seem to suggest difference, even though their stories might be about differences. I sometimes read and wonder: how can this person, so apt at communication, have trouble communicating in life? Does this reaction make sense?
I don't think that reaction makes sense. Of course we're relatable. We're people. If it's a shock that we're more like you than different, that's a condemnation of the stories our culture tells about autism, not an indication of anything about autistic people. Writing an essay, for my own purposes, on my own time, requires a very different skillset than communicating face-to-face in real time. Blogging is, despite popular belief, not actually an ADL (activity of daily living.)
I think one flaw many of us have is to assume everyone thinks the way we do. Was this something you always felt could not be true? Did you realize early on that you think differently than other people? Has that brought you some moral benefits, making it easier to respect others, to understand behavior, etc.?
According to my teacher's notes when I was being evaluated in preschool, I've complained about not "fitting in" since I was four years old. I don't know where on earth I got that phrase from (I was *very* echolalic as a child,) but yes, I've always know that I was autistic or disabled or different, even when I didn't know those words. I don't think that's afforded me any moral superiority. If anything, it's made me conceive of myself, for a very long time, as someone who is morally *inferior*--if everyone else can do or experience something, why can't I? What's wrong with me? That's why we need neurodiversity, autism acceptance, and disability rights. No preschooler should ever be convinced that they're a bad person because they can't do some of the things their peers can. Four years old is too young for that.
I've noticed that many thinkers are pushing to destigmatize Down Syndrome by pointing out how irrelevant it can be as a category. But then, many autistic people seem happy to emphasize how different (and wonderfully so) they in fact are. Can these approaches be fit together?
I think that any successful social justice movement needs both approaches. I think the question of which approach gets priority in a movement can be answered by looking at community history. People with Down Syndrome, as with the larger community of people with Intellectual Disabilities, have had an extraordinarily difficult time being acknowledged as people at all. As a result, they have a history of extreme, horrific dehumanization. Obviously, to counteract that, you find it extremely important to emphasize your community's fundamental humanity.
The Autistic community shares that history of dehumanization. But for many of us, a big component of the abuse and dehumanization we've survived as a community has taken the form of trying to make us, to quote Ivar Lovaas, "indistinguishable from our peers." We've been taught that the price of our humanity is the absence of any visibly or uniquely autistic traits. As a result, our movement pushes back against the automatic stigmatization of autistic as bad, and advocates for acceptance and celebration. But these approaches really aren't mutually exclusive. It's important to me that people I interact with respect my stimming and echolalia as purposeful, meaningful, and communicative--celebrating my differences. It's also important to me that people remember that I am fundamentally a person, and that while autism is a fundamental and inextricable part of who I am, I'm still, by virtue of being a person, more like you than I am different. If you don't think of me as a person, you won't have any reason to value the particular ways I do humanity.
What is the best thing we can teach people, in order to get them to have more empathy for the autistic?
The concept I come back to, over and over again, is that autism isn't special. Autism is a developmental disorder, not some alien technology that renders basic laws of physics, biology, and psychology irrelevant. And this is one area where, to return to a previously asked question, I do think some other disability communities have had more success than the Autistic community. For example: deaf children raised without access to a signing community ALSO do very poorly on classic tests of theory of mind. But no one calls them mindblind. We know that the Sally-Anne test requires an understanding of certain linguistic features, which themselves rely on a certain amount of executive function--so when deaf children without those linguistic abilities fail, we don't take this as an indication that deafness is a social disability.
But when autistic people--people with a disability that is well known to center around impairments with, among other things, language and executive function!--perform poorly on this same test, this is taken as proof that we don't understand that other people, let alone we ourselves, even have minds. Seriously. Autism is popularly conceived of as a disability that can erase every basic feature of humanity. That sounds more like magic than science to me. Yes, some aspects of my neurology are different! But I promise, that doesn't mean that I can't feel pain, or love. Yes, my sensory processing, motor skills, and ways of using language are configured differently than the majority. That doesn't need to call my consciousness, or my ability to empathize with others or to know my own mind, into question. A lot of the discourse around autism relies on significant, unnecessary, and destructive logical leaps, and no one questions them, because it's AUTISM, and this apparently means that basic standards of rigor do not apply.
So, to return to your question--no, I don't think it's a question of non-autistic people needing more empathy. I think it's a question of common sense, and of needing to combat at every turn the harmful and frankly nonsensical stereotypes about autism that form the basis for our cultural expectations.
Do you have any new projects coming up? Can you tell us about them?
Right now, most of my energy is going to the Loud Hands Project. We've finished fundraising, and our website and first anthology are in their final stages of production--I'm working on the cover design for the anthology today, actually. It's been quite an adventure. The Loud Hands Project is a project of the Autistic Self Advocacy Network, and it's all about countering the persistent and downright false stories our culture tells about autism, and letting autistic people tell our own. The anthology and website should be launching in the next month, and we've got many more pieces planned. Check us out!