August 10th, 2017
Autistic people widely agree that we’re better-equipped to solve our problems than anyone else. Given a say in what science gets funded and what the organizations with the biggest budgets do, we believe, we could tackle many of the most serious problems facing our community. We demand our place in establishing the disability policy agenda, insisting that primarily parent-run organizations should not make every decision about which issues take priority. Unfortunately, our behavior doesn’t always match this stated position. We demand a place at the table and then don’t always show up in the numbers we should for crucial issues like protecting Medicaid.
Too many other Autistic adults were curiously silent. That kind of failure to act is risky. It threatens both whatever is on the line in the moment, our movement and community’s reputations, and our chances of a seat at the table. If we let parents and other segments of the disability community do the heavy lifting, we will not be taken as seriously as we hope to be.
The muted response to a threat to Medicaid was disturbing. The issue got round-the-clock attention from the most serious core of neurodiversity activists, but ordinary Autistics did not seem to engage with the issue as much as one would hope. The apocalyptic consequences of cuts to Medicaid didn’t get the attention or inspire the outrage that bad behavior by Autism Speaks or tactless conference programming do. That may say something worrisome about the community’s priorities, but there may be good reasons for that.
We may have struggled to get Autistic people to engage with healthcare issues because there are real divides in the Autistic population. Autistic internet-culture skews toward lower-support people. That tends to be who can find a device and a connection and who is permitted to learn how to use them to enter the worlds we’ve created together. Autism without an intellectual disability hasn’t historically fit the bill for many Medicaid-funded services, so the program may not be personally relevant or familiar to many people in Autistic internet culture.
Increased diagnosis and self-identification has led to big influxes of new people in many Autistic internet spaces. This is largely a good thing, but it comes with challenges. It’s hard to teach these vast groups of people about the needs of Autistics very different from themselves, and our cultural precept that there is one spectrum, and we’re all our siblings’ keepers, as fast as they come in. Healthcare policy presents a particularly hard set of issues to explain. The problems, programs, and solutions are abstract and full of jargon.
That said, if we want to remain a community for all Autistic people, ready to welcome and protect high- and low-support alike, we have to care about the issues affecting higher-support persons. We have to teach newcomers to care about those issues and understand the basics, enough to know when it’s important to take action. We have to tell those stories in compelling ways that make them part of our shared story. Leaders have to commit to telling better stories. Ordinary people, if they want to live in an Autistic community that really belongs to all of us, have to listen and learn.
If we don’t inculcate new people with the importance of standing up for higher-support disabled people, if we can’t show them their place in the wider world of pan-disability issues, we risk losing our way. If ordinary Autistics don’t know about the most significant disability issues of our times, we risk devolving from serious movement into isolated subculture. If we only speak for people who can communicate with words and access the internet, we aren’t likely to get a seat at the table when serious advocates and organizations are making serious policy decisions.
Of course, we should be the primary decision-makers about our own lives, our problems, the things that are primarily going to affect us. However, the reality is that people who rarely show up eventually stop receiving invitations. If we want to be taken seriously by the major disabled- and parent-run organizations, we have to show up. If we want to be in charge of the agenda for our future, we have to shake off leaned helplessness and do the work.
Freedom, a self-determined life, is an inseparably entangled cluster of rights and responsibilities. Those things are, inevitably, two sides of the same coin. If we want “nothing about us without us[,]” we have to attend discussions that are about us. Our leaders are doing an admirable job, but they can’t do it alone. Ultimately, nothing gets done unless someone does it. If we want freedom, if we want a say in what our future holds, we have to shoulder the burden of participating in those struggles and decisions. Otherwise, others will continue to do it for us.