Like most Autistic holidays, Autistics Speaking Day came about because an ableist event was taking place on social media. We disrupted it. By chance, it falls at the same time of year when many cultures remember their dead. That has me thinking about a relative suspected of being Autistic, how far we’ve come, and where we are now. At the moment, I have grave concerns about what I see going on and its implications for our continued progress. The same suspicion of qualification and expertise that has swept the world lately seems to be reaching us. I see growing contempt for the people who are working on the most concrete, substantive issues that affect how long and well Autistics live, and I see it led by people who show no indication of planning to take over or step into that lifesaving work and fixing what they think is being done wrong. If they successfully undermine the reputations of people who get us seats at the tables where decisions are made about us, I predict dire consequence for the most vulnerable Autistics. Lives will be harsher, shorter, and less than they could have been much as that relative’s, my great-great-uncle’s, was.
He was born in 1895 on the eastern fringes of the Carolina mountains, where his family, my family, settled on what I think was Catawba land around 150 years before. Wade’s parents were both prominent members of their small community. It soon became obvious that Wade had a developmental disability, probably autism. As he grew up, he began to like walking in the woods by himself. That frightened his family. Public benefits for people with disabilities didn’t exist in Wade’s community at that time. Even if it occurred to them to private-pay for some sort of home care, Wade’s parents saw so little cash in any given year that the cost of that might well have been more than their whole income. The only option they saw was the big state hospital, so that was where Wade went. He spent the rest of his life there. I’m sure there were no more walks in the woods. I’m not sure anyone visited him. It would have been a long, hard trip over the roads of those days for his parents and siblings.
However, I suspect the reason Wade became a family secret had more to do with stigma and fear than early cars and unpaved switchbacks. By the time he was a young man, eugenics was considered a public health best practice and written into state law. Wade’s siblings who left the farm and the immediately surrounding environs weren’t visibly disabled, but there was quirkiness flowing through the family. It hadn’t necessarily mattered in the mountains, where they grew up practically in the 18th century. In the 20th, where they found themselves as adults, this kind of natural variation was considered a problem to be stamped out. Being white, middle class, and educated offered some protection, but it wasn’t a good time to be unusual or to be related by blood to anyone who was. Acknowledging Wade might have seemed dangerous, especially for one of his brothers, my great-grandfather. An educator married to a nurse, it seems implausible that he was unfamiliar with the concept, policy, and practice of eugenics as he watched his middle son struggle conspicuously with literacy during the most active years of North Carolina’s eugenics program. My great-grandfather doesn’t come across as a laid-back father in family stories. Did part of the intensity and perfectionism in his parenting come from a nagging fear of what might happen if anyone took a second look at his outwardly respectable family? We tend toward long generations, so I’ll never know. My great-grandfather died just a few years before I was born at age 94.
Indeed, all of Wade’s full siblings who survived early childhood enjoyed long lives. They lived fully, the kinds of lives that pack a funeral service to the rafters. Meanwhile, days passed for Wade with no choices, no hope, and no variety. His life was one of thousands written off and thrown away because of attitudes toward people with disabilities. The conditions in big institutions at that time were brutal: bad food, poor or absent medical care, abuse, neglect. In a family where people who don’t make 80 are thought to have died young, Wade only got 68 years. He passed away in 1964. Maybe deinstitutionalization would have benefited him if he had lived a little longer, but that wasn’t how things worked out. My grandfather only learned that he had an Uncle Wade as an adult, when my great-grandfather abruptly announced that he needed to go home for his brother’s funeral. Years later, my mother tracked down an orderly from the hospital who said he cared for Wade. The orderly remembered him as a nice person. That is the sum total of what I know about Wade plus a lot of conjecture and extrapolation from historical context. If there ever were photographs of him, they don’t seem to have survived. Wade, a man my mother should have known as a child, was more utterly erased than the events surrounding my family’s multiracial heritage that took place 200 years ago.
The only good news here is that what happened to Wade isn’t normal anymore. People with I/DD have better life options than being swallowed up by vast, purgatorial facilities and largely obliterated from memory. The last century has been a time of remarkable change. That brings me to my concerns about where our community is now. The changes that have come about required years of work by people with a diverse group of skill sets, people who could imagine a better world than any they had ever seen. It took protests, litigation, policy work including legislation, investigative journalism, and the kind of self-advocacy that tells the audience what it needs to hear rather than what it wants to hear. It took more than charismatic people voicing strong opinions without doing much else, especially editorializing among people who largely agree. It took more than memes about identity and self-care, talking friends through bad days, and racking up followers on social media. There is nothing wrong with any of those things. They are sometimes enjoyable or meaningful, but none of them were sufficient to make our lives better in the past. They still aren’t now. It took people with knowledge beyond their own stories.
Things may not be as bad as they were in the early 20th century, but the Autistic community has a long way to go. Like Wade’s, our lifespans are still statistically shorter than our neurotypical peers’. Our rates of poverty and unemployment are appalling. Autistic people still face discrimination in many areas of life. Too many of us are still languishing, not unlike the way Wade did. We betray those people when we do anything other than continuing to move forward. We betray them when we act like having opinions and talking about them is good enough. We betray them when we undermine the hard work that needs to be done, and the people who are leading not so much a critique as a rejection of the wonks, nerds, and professionals are guilty of that betrayal. Everyone in our community or claiming to serve it should be held to account when they make mistakes or wrong others, but people who cast vague, factually questionable aspersions on those who are making Autistic people’s lives better in concrete, identifiable ways are wildly irresponsible. They are standing in the way of the alleviation of suffering and wasted life and the prevention of early, needless death.
I hate to give dire warnings on a holiday, but this seems like an important thing to speak about. If you don’t like the way something is being done, say something or take it on, yourself. Don’t promote blanket rejection of the people who are doing what is necessary to reduce the number of people who spend their lives languishing and suffering, never getting to experience the full measure of human life. Wade Taylor died before the promise of the Neurodiversity Movement could be kept for him, before neurodiversity was a word anyone used, before many people contemplated the possibility that my college-educated great-grandfather and his brother, Wade could share some fundamental equality, before he got much chance to live. Don’t be a contributing factor in that happening to even one more person. Make yourself useful, by joining the work or through critique that is specific and meaningful, or get out of the way. We must keep moving forward. We owe that much to living and dead alike.
