The more “autism awareness” events I see, the more I realize the general public is more comfortable with the idea of Autistic people than the reality. With a puzzle piece, a ribbon, a donation, or a Facebook or Twitter app, an average citizen does their duty, checks the autism box on their charitable instincts and moves on, never having to talk to, experience, work, live, learn with or otherwise acknowledge those Autistics they pass by every day. To most people, autism is something that is always just slightly around the corner—in a friend’s sibling or child, a celebrity’s self-congratulatory fundraising effort, or a “very special episode” of their favorite TV show. I remember being at a conference recently, a gathering of funders, social workers, non-profit executives and academic experts, gathered to discuss “special needs” issues. The opening speaker regaled us with a statement about how very common “special needs” are in every community, pointing out that “with 1 in 110 children being diagnosed with autism, it is certainly the case that even people in this very room have a child or know someone with a family member with this terrible affliction.” I remember smiling, not terribly amused. The idea of actual Autistic people—with thoughts, opinions, beliefs, and ideas—is alien to the average member of the public, even and perhaps especially when they declare their support for the autism “cause.” They define us by our absence, they describe us by our silence, and they hope for our salvation through a future in which we don’t exist.
I thought about this when I learned about the campaign Communication Shutdown calling on worldwide Internet users to “shutdown your social networks for one day, [and] you will have some idea of what it’s like for people with autism who face this challenge every day.” Isn’t this convenient? Never mind that through social media many of us have found a community far more welcoming than our own schools, workplaces and places of residence. Never mind that of the challenges we experience, ignorance and maltreatment by our peers is frequently the worst. Never mind that common sense might demand that the best way to have “some idea of what it’s like” for Autistic people and to learn about the challenges, strengths, hopes, disappointments, losses, and opportunities we face every day would be to actually communicate with us, rather than express some token silence. But that would require an acknowledgement of Autistics as people—people who exist as more than victims to be saved. People who think about things other than “cure” or “cause.” People who exist in all walks of life –not just in “very special episodes” or public service announcements, but in the same classrooms, workplaces, conferences, playgrounds, swimming pools, and communities as “normal” folk. People who they may have hurt. People who they may have wronged. People who might have different opinions than those that speak on our behalves. Operation Communication Shutdown enables those who refuse any view of the challenges of autism in which non-Autistic people might be part of the problem.
To them, autism is a fearful, alien force that lurks in the darkness,stealing away lives. When they simulate us, they disappear. They silence themselves—because that is what we are to them: an absence. If we should happen to speak up—when we practice the inconvenient habit of existing too conspicuously—we are seen as dangerous and unstable at worst, and peculiar novelties at best. People tell us, “Are you sure?”, “I would’ve had no idea!”, “But you’re so articulate…”. To our self-appointed allies, we can be exceptions to the rule but not challenge what they already believe. Once again, autism is defined by its impact on non-Autistic people, first and foremost.
That’s why I’m so glad to participate in Autistics Speaking Day, and why I have to thank Corina, Kat, and all the other people who have played such an important role in setting it up. This is more than a response to a silly idea by a public relations agency. It is an assertion of a thriving, independent, and very real Autistic community and culture, capable not only of responding to the predations of those who speak about us without us, but also of defining a new way of thinking about autism. It says that we are not content to sit back and wait for non-Autistic people to come and “save” us. It says that we reserve the right—first and before any others—to talk about our lives and our experiences. It says that we are defined not by how others perceive us or the challenges or stress other people have in response to our existence, but instead by what we feel, what we experience. Perhaps I will come across as selfish, but shouldn’t autism be about us, before it is about our parents, our siblings, or any of the many professionals who make their livings from us? Shouldn’t we be unafraid to say that when talking about us, we come first?
Autistics Speaking Day is a way of answering those questions with a loud, “Hell yeah!”, said in our own voice. It is a way of not just beating back the toxic culture of the autism non-profit establishment, but filling the gap with something new and beautiful of our own. I don’t pretend to know what Autistic culture will look like as it grows and emerges as a place where we can take refuge and build, but I know it will be something worth fighting for. What’s more, I know that it will be something that will help make better lives for all of us. We need it to, because it is only with each other that we can completely achieve the belonging, inclusion and respect that we’re working towards.
The reality is activism can only get us part of the way there. Make no mistake – we do need advocacy and activism. We do need to fight, both in the halls of power and on the streets. Yet, in the end, that can only go so far. Even after decades of struggle, racism, sexism, homophobia and other forms of prejudice still exist. Ableism will not be any different, though that does not diminish the need to fight to see it drastically reduced. What can close the gap between what activism can achieve and the world we want to live in is the building of community. What we are denied from the broader society, we will find with each other. When we are hurt by ignorance, we will find comfort in our own mutual understanding. When we face exhaustion from struggling for our rights against an uncaring world, we will always have a place where we belong. There will always be prejudice and ignorance about autism. There will always be discrimination and bullying. But with something of our own – built by our own words and actions—the Autistic People can face the world as a community united in solidarity. We can love each other and together be the world we want to live in.