January 29th, 2017
People are born, labeled, and self-identified with autism all the time, but the distance from there to “different, not less,” the neurodiversity paradigm, culture, community, and becoming Autistic is a bigger leap. It’s not an intuitive move because it’s downright counter-cultural in a society that often treats disability as a lesser, undesirable, less human way of living. Consider how you or your loved one covered the distance from diagnosis or realization to here. It probably had something to do with the internet. Some people find out about autism online, realize it describes their experiences, and come to identify with it or seek a diagnosis. Some people grow up knowing about their disability and eventually find parts of the internet where people teach them a narrative that has more to offer the Autistic individual than the mainstream assumption of inferiority and acceptance of the medical model. A lucky handful of people have had someone sit down and explain neurodiversity and Autistic identity IRL, but the people offering those things usually picked them up in Autistic regions of the internet.
The internet is many things to us. It’s a repository of our knowledge, writings and art that make up a lot of our culture, and forums and blogs, many now defunct, that keep our history within easy reach. It’s a tool we’ve used to resist eugenics and protect each other. Its most important function in our culture, however, may be as an on-ramp. We have some (affiliate link) books now. Speakers knowledgeable about Autistic culture are even involved in some autism conferences these days. Still, the ways new people enter our community almost always have something to do with the internet. Because stumbling across Autistic culture and community depends on a lot of wandering and poking around in corners of the internet that are still somewhat obscure, it isn’t clear that this would work nearly as well as it does without net neutrality.
Our parts of the internet are small in the great scheme of things and not especially profitable. If people whose sites appeal to bigger audiences and make more money can buy favorable treatment from the network and make their sites faster and easier to reach, it will probably happen at the expense of our sites. Most of our little websites, Autistic Future included, would not be able to buy into new fast lanes. Some bloggers and webmasters might give up and shut their sites down in the face of declining traffic. This would bring about the demise of many uniquely Autistic spaces, reduce the flow of new content and ideas, and, to the extent that these sites haven’t been archived somewhere, strip away some of the culture we have collectively produced. Even where independent sites stayed up, conflicts between internet service providers might make it hard for some people to see them.
A diminished independent, Autistic internet would be bad for our community because we would probably have to shift more of the ways we connect to each other to the larger social networks. We would become even more dangerously dependent on sites like Facebook and Twitter than we already are. In these walled garden environments, it can be hard to share content across networks. We also don’t own the spaces we use. We’re squatters rather than tenants or owners, and we are vulnerable to being shut down at any time for any or no reason. Those decisions are in the hands of people who may or may not be friendly to us. The less we have URLs and web hosting of our own, the more we can expect instability, shuttered accounts, connections between friends cut off, art and writing lost because it offends neurotypicals. We might have to be less vocal and assertive, which would further reduce the internet’s usefulness as a way to protect ourselves and make us harder for new people to find. Because each big social network tailors itself to specific kinds of content, our forms and formats might be limited to what succeeds on at least one of the major social networks. This could lead to Autistic writing and art becoming bound by particular forms, making things more generic and squelching anything innovative or new. Even people who find our community may be less inclined to join it if it has less to offer.
The internet isn’t perfect, but it is the best thing we have. An end to net neutrality would have terrible consequences for Autistic people. It would damage the most powerful tool at our disposal and disposes us of the network we (affiliate link) may have built to make rich neurotypicals richer. We need to protect net neutrality with everything we have, with abandon, with all the ferocity we used to throw at Autism Speaks, and the time to do it is now. Don’t wait until bad things are already well underway. Sign up for action alerts with organizations like Fight for the Future today. Read the emails. Pay attention. If you have some extra money, consider donating it. If you don’t know much about net neutrality, start educating yourself on how the issue affects your life. There are many great free and (affiliate link) low-cost resources that are, for now, only a Google search away. Add net neutrality to the list of things you bring up with your legislators when you contact them. Speak up about how it affects your life. Get ready to act on this issue when the opportunity arises, and get ready for another long struggle. Remember that we’re facing long odds, but we’ve beaten those before.