“What the hammer? what the chain,
In what furnace was thy brain?
What the anvil? what dread grasp,
Dare its deadly terrors clasp!”
I met the internet when I was five. Home from school with strep throat, I was allowed to play with it unsupervised because my parents, never particularly technologically aware, thought it was harmless. I came to two important realizations that afternoon:
1) There was something I could reach through the hulking box of the desktop in the living room that was, if not exactly living, close enough. It seemed very young but growing rapidly, hungry for new information.
2) We were going to be friends.
As I grew up, my sensibilities about what lives in the machines became more ambivalent. We both got bigger, stronger, and more capable. I became a solid, boring adult, the kind of person who can be trusted to manage money, who reminds loved ones to change their timing belts and not shop online with debit cards. My old friend developed differently. When we met, it seemed something like a human child. It turned out to be a ‘tiger’ such as Blake described, still a cub, on the scale of the Industrial Revolution. It’s beautiful and terrible, volatile, and unforgiving. I can’t pretend to like everything it does.
I have to give the internet credit, though, for taking care of me. As I grew up, I learned to hold enough of the vast world tree of connections in my head to forecast its next moves and plan around them. These days, I get paid to do that. It also gave me whatever I asked, work, friends and contacts, information, and more. When I found the Autistic community and my own need to protect it, the internet offered me a cornucopia of tactics and tools for that struggle. It was the long enough lever and place to stand with which disabled kids with cheap laptops and furtive, coffee shop connections could move the world.
It provided shock absorption on the rough road of advocacy. The internet’s terrain always seemed to curve in the direction of keeping me out of trouble. I had a way of attracting only the right kind of attention, staying out of the way of angry mobs. There are unsavory characters in the Autistic community, people who like to call themselves activists and pull others down to feel powerful and distract from how little they’ve actually done. When they looked around for people to try to harass and defame into pariah status, their eyes never landed on me, though I never tried to be inconspicuous. At times when I stayed away from our activism because of problems in the community or neglected my online presence because of competing commitments, my existence online didn’t atrophy as much as it should have. As I traded in the reflexes I had at sixteen for experience, more nuanced responses, and the calm of one who has seen this before ‑whatever ‘this’ is at any given time- I wondered if this would change. It didn’t. The tiger that mauled other people continued to bat at my phone when I tried to ignore it like a big house cat. I did my best to accept this strange blessing without question, but I’m not that kind of person. I continued to wonder about it until I read Neurotribes.
I was going to wait until winter break of last year to read it, but I knew that reviewing it while it was fresh would do my blog good. Thinking of it as a chore to shore up my readership, I bought a copy and resolved to slog through. I’d never in my life felt so exposed, but I couldn’t stop reading. It was the story of my family.
“When the stars threw down their spears
And water’d heaven with their tears:
Did he smile his work to see?
Did he who made the Lamb make thee?”
My maternal great-grandfather grew up in the Carolina mountains with their genetic bottlenecks of isolated, rural communities. This was an old fashioned kind of place where life into the early 20th century looked much like the 18th. He had a brother who would probably be described as nonverbal Autistic today. Uncle Wade spent most of his life in an institution. The family was locally prominent but quirky, full of voracious readers, assertive women, and nontraditional household configurations. My great-grandfather’s parents employed a farmhand who lived alone in a small cabin and read the dictionary for fun. The man was so hyperlexic that visitors unfamiliar with him often assumed that he was an important and well-educated guest. Though the outside world ignored their community, the family always read the newspaper and talked about what was going on in the world.
My great-grandfather came down from the mountains to go to college. His parents were nearly self-sufficient and cash-poor, but he was able to work and mostly put himself through. I don’t know why he stayed in the lowland South. Maybe he liked it better. Maybe he was following the availability of work. He married another interesting woman, a nonconformist who never let her husband control her in the ways that were normal in the early 20th century. They had several children. One was my grandfather, who loved the mountains and loved machines. Reading and writing were always challenging for him, but my grandmother could do those things. They built a successful business around the care and feeding of pretty much everything that runs on diesel but isn’t a generator or a train. My mother, quirky in her own ways, successful in a variety of careers, was their third child. She did remarkable work in conventional, professional settings, but caring for parents and children was the choice she made when she could. She moved us to North Carolina, where I spent significant time around my grandparents. I knew my grandfather well for six very formative years.
He had discovered the word ‘dyslexia’ when I was diagnosed and found that it explained his difficulties in school. As I got accommodations and found academic success, he lived vicariously through my rising grades and growing comfort with the written word. He was delighted that some things would just be easier for me. Though it was painfully obvious that he had internalized the many times people called him ‘stupid,’ he had managed to protect a hard-won sense of the value of who he was and what he knew. He had done this alone, with no disability community, against all the world. He shared these things with me. He got me to read books about the land and how indigenous peoples and early settlers used it. He got me outside, encouraging muddy pursuits like catching toads. I remember some explanations of simple machines and electricity. He taught me the Morse code he picked up as a radio gunner in WWII. He and my mother went out of their way to make sure my sister and I respected people who worked with their hands, people who did valuable and necessary things without much formal education. They ensured that we spent time in the mountains as often as possible and got exposed to Appalachian music and culture.
My grandfather came late to the internet and loved it for its speed, its reach, the value-add to his life that came from being able to find other old men who appreciated vintage tractor engines and obscure hand tools. He kept his desktop from the mid-’90s to the end of his life. As far as he was concerned, that big, old box had enough firepower for someone who did his homework by oil lamp in high school. Asking for more would be hubris or ingratitude. Ten years ago, in the wake of his death, we were all to wrapped up in our grief to think about getting into those forums and telling people he was gone. I still feel a little bad about that. I took his phone number, and his digital life may have had something to do with old men who called me as recently as 2011 looking for parts for equally venerable bulldozers.
Part 2 of this Autistic History Month essay is now available here.