AUTISTIC FUTURE: A FUTURE OF OUR OWN

Solidarity and Self-Determination

A set of handcuffs opens and falls off of one of a person's outstretched wrists.

What we want comes with responsibility.

 

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.

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Are We Giving Parents Bad Advice?

Autistic adults often tell the neurotypical parents of Autistic children to listen to us. This advice is frequently repeated, and it’s such a fixture of discourse in our community that it isn’t often examined. Its implications aren’t thought through as often as they should be. If it were, it might well have been abandoned by now. We should stop using things like ‘hear Autistic voices’ and ‘listen to Autistic people’ as platitudes because these statements aren’t effectively explaining what we hope parents will learn and do. The old saw sets some parents on the path to good information, but it is easily misinterpreted and sometimes deliberately twisted into an excuse to avoid listening to what most Autistic people have to say.

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Temple Grandin has Opinions

This past April, Dr. Grandin sparked controversy by opining again, though many of her Autistic peers wish she would refrain from being so vocal. When she expresses herself, it’s something of a headline within Autistic circles and, often, outside. This is because outsiders frequently perceive her as an expert on Autistic experiences or community leader, although she has deliberately avoided living in the Autistic community. Dr. Grandin is rare, and justifiably admired, for being well into middle-age and open about her disability. In an ideal world, younger Autistics could ignore her occasional, outlandish statements and respect her for surviving the bad, old days just as many of us do around holiday dinner tables with certain relatives.

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How to Have an Okay Autism Conference

an empty auditorium is full of chairs. there is a stage with a podium and blackboard at the front. a projector hangs from the ceiling

Conference Season is Coming

April is coming up, and with it, autism conferences. If you’re Autistic, you probably know how fraught these events can be. If you’re not, you may not be aware of that because disabled conference speakers don’t always speak up. Some people may be afraid to acknowledge problems. Others may find translating the indignities of being a disabled conference speaker from disabled to mainstream culture and experience too overwhelming or exhausting try. Putting up with painful or uncomfortable things is sometimes easier than explaining them to nondisabled people in hopes that they will change. The challenge is that certain forms of disabled conference speaker-hood can be dehumanizing. Being an Autistic speaker sometimes being questioned about personal matters in front of large crowds of strangers, being asked to explain the behavior of Autistic strangers not present, and being expected to politely ignore any dangerous, quack autism treatments on display. It usually involves exposure to condescension, assumptions about Autistic people, inspiration porn, and repeating autism 101 information over and over again. It almost always involves feeling scrutinized like an animal in the zoo and being in close contact with the representatives of groups with which the Autistic community has a troubled history.

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Day of Mourning 2017

Tonight, people will gather around the world to mourn persons with disabilities killed by their caregivers. Some have loved ones who also remember and miss them. Many were kept so isolated by those who would eventually murder them that they were largely strangers to the world. Their memories are little more than names we read at vigils because they were ours, though we did not know them, and maybe an old school picture online. It’s good that we remember them. We wouldn’t be people, much less a people, if we didn’t remember our dead. While we mourn, though, we can’t forget the living.

If things go badly with healthcare and benefits law, more people will die in the months to come. There won’t be many colorful stories of violence to attract media attention. These deaths won’t make the news. We won’t hear about most of them. They will happen quietly in ERs, family homes, and nursing homes. People who are just barely hanging on at the margins with the access to services and care that they have now will fade away almost unnoticed. Many more will slide into a living death in facilities. The people we loose will look like the average person on a Day of Mourning vigil list: extremely vulnerable because of youth, age, or a significant impairment, isolated. They’re ours, too, whether or not we know them, and we owe them our loyalty, our advocacy. Care about them, too. If you live in the U.S. and are fortunate enough to be able to attend a vigil, think about reaching out to your representative first.