February 18th, 2017

Who Will We Be?

Communities are funny things. They don’t exist until a critical mass of people believe they do. They’re stories that come to life if people tell them loud and long enough. Behave as if a people exists, go through the motions determinedly until it stops feeling artificial, and something will start to solidify. The story of an Autistic people that we are telling together becomes more tangible every day, but we have time to make decisions while things are still malleable. Especially as we enter a time of adversity in the U.S., we need to make choices about what turns this narrative will take.

For all our talk of shared identity, there are really three broad bands of priority and need along our spectrum. There are people who are independent enough that we don’t need atypical levels of support. We’re at least as self-sufficient as anyone else in this era of mass-production, disposable clothing, oil change joints, and eating out. We need acceptance and the freedom to live as we wish, to have the interests, hopes, dreams and priorities we have even if they’re unusual. We need to accept ourselves, the strengths and weaknesses we have, and shake off self-pity and questions about what might have been. We need to find others who accept, value, and love us as we are. If we find these things, we’re often happy and prosperous. If we don’t, we become part of our demographic’s high rate of untimely death.

Then, there are the people who look least neurotypical, who may have other disabilities or challenging behaviors, people who communicate unconventionally, people who may be labeled ‘low functioning.’ These individuals get services and supports at least sometimes. The services and supports they get are usually, hopefully enough to provide minimally adequate food, clothing, housing, and medical care. Housing may mean an institution, either a traditional one or a smaller but equally cold, drab, dangerous setting. Their lives are often devoid of the stimulation, choice, and opportunities for healthy risk-taking and personal growth that make existence worth the effort. As they age out of the public schools, they risk what a friend of mine calls “graduating to the television,” entering a purgatory of daytime TV that stretches on to the grave. This bleak landscape is punctuated by abuse and neglect. People in this category need their services and supports protected so that they can survive. They need to be liberated from the expectation that no more than this is possible for them so that they can really live. They need intensive supports to contribute in whatever ways they can, express preferences, enact their wishes, and have the rich variety of experiences that other people enjoy.  They need the opportunity to form real relationships with disabled and non-disabled people so that they don’t become the isolated, vulnerable people who are human predators’ easiest prey. Given those things, they can exemplify how little impairment matters for quality of life.

The bulk of people around the middle of the spectrum may have challenges in important areas of life, like self-care or working, but they don’t usually qualify for adult benefits or services if they live in the U.S. Many could be largely self-sufficient given help around the house and a flexible work environment where there is assistance for managing life’s logistical details. Having great executive functioning is less important given a smartphone and a good administrative assistant. Being unable to drive isn’t a problem given the money to use ridesharing or live in a dense, urban area. These are things many people get when they reach middle- or upper-management roles or roughly upper-middle class status. This group needs the supports to be more self-supporting, a chance to get a foot through the door. Some manage to find environments where this is available to them, but the barriers in higher education and typical, entry-level jobs for people who struggle with organization, time management, or dealing with living arrangements can prove insurmountable. People who aren’t in environments that allow them to reach the point where they can pay for much of what they need try to scrape by unemployed, underemployed, in jobs for which they’re overqualified. There are thousands of Autistic adults leaning on fragile networks of formal and informal supports. Running out of favors, an untenable family situation, or the end of an intimate relationship can create a spiral of unmet support needs that ends in homelessness. People who are trapped in the gap of intermediate support needs also sometimes just leave a world that hasn’t made room for them. They’re part of our community’s high rate of early death, too. These people need that gap closed. They need benefits and supports to ultimately become mostly self-supporting and financially secure.

These categories have soft edges. People move between them over the course of a lifetime. They are meaningful even if they aren’t set in stone. They represent distinct problems, interests, and priorities. All three are present in the Autistic internet, but the people with the most significant impairments are probably least represented. Not all of them, maybe not many of them, are given access to computers and taught how to get online. The rest of us often say how much we care about the people who are nonverbal, who have challenging behaviors, who have intellectual disabilities, with whom we haven’t figured out how to communicate consistently. We make a great show of unity and solidarity when we insist on one label for the whole spectrum. Now, we have to decide if that part of the story we’ve told together will become real.

If there is to be one welcoming, inclusive Autistic people, Autistics in the U.S. who aren’t directly affected by Medicaid and poverty benefits will still stand up for those things because some Autistics need them. We will recognize that some people who are part of our story will be institutionalized or die if these things are dismantled, and we will protect our neighbors as we would protect ourselves. We will either act like one people and prove our willingness to protect our vulnerable or we will abandon and marginalize our own and show the world that we don’t care nearly as much about inclusion for all Autistics as we say. I don’t know which of those things we will decide to do, but I do know what I hope we can tell our grandchildren about where this story goes.

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