The world of disability spends a lot of its time arguing about semantics. This has been particularly true of the Autistic community, sometimes to an unproductive degree, though it seems to have been less of a problem recently as other events and concerns have occupied our attention. People who say the wrong words sometimes still mean the right things. They still want self-determination for disabled people. People who use the right words don’t always do what we would wish. ‘Neurodiversity’ seems to be slapped on everything these days, regardless of whether or not that thing is in keeping with the principles which came with the term in its more controversial days. Semantics are a fairly weak predictor of how a given person or organization will think or act. However, there is one semantic tell which remains very good at unveiling attitudes.
Every year, toward the end of March, the Autistic community braces itself for April. People who subscribe to the neurodiversity paradigm don’t enjoy the usual cavalcade of inspiration porn, offensive fundraising tactics, photos, videos, and written storytelling violating the privacy of un-consenting children and adults, and requests to do the frequently unpaid and demeaning work of speaking to crowds of neurotypicals and sometimes answering very personal questions.
For those of us who have done this advocacy for a while, April sometimes feels like a reprise of the time before paying lip service to neurodiversity had become somewhat fashionable even among people who don’t really live out what it means. Those of us who live in the southeastern United States tend to analogize April awareness efforts to the thick pine pollen that turns nearly everything outdoors yellow, and makes nearly everyone sick, around the same time. It’s an unpleasant but inevitable part of spring.
Respect as verb, as action rather than feeling, has been a hot topic in neurodiversity circles lately. This is because of a problem of disrespect which becomes more apparent as Autistic voices are included in discussions of the issues that affect us more and more. People are coming to understand how important it is to include Autistic people in discussions of the issues affecting us. This is a positive development, the result of years of advocacy. Unfortunately, outsiders don’t always practice that inclusion in the right ways. There are growing concerns about undignified tokenism and even exploitative labor practices. While this set of issues isn’t something we brought upon ourselves, no one else is going to fix it. We will be treated with respect to the extent that a critical mass of us demand it. That is especially important to remember with April just days away.
It isn’t abstract. Nothing about it is distant. That may be the crux of why Disability Day of Mourning has such resonance. Filicide is not a problem the average Autistic person or other member of the disability community will experience. The list of names is relatively short, though it is a harm its perpetrators would, almost by definition seek to conceal in most cases. Though it seems likely there are unreported incidents, it is probably a fairly low-incidence problem. The reason we mourn and remember is not that most of us will be victims of filicide. It is that fillicide is just a particularly egregious expression of a problem affecting us all.
People with disabilities are too regularly treated as less than fully human. This is particularly true for anyone who has an intellectual disability, does not communicate with words, or relies on technology to survive. Almost everyone who has had the opportunity to go to college or graduate school, and has taken an ethics or philosophy course at that level, has encountered casual debate about whether or not people with this or that kind or degree of disability should be allowed to go on living. Voicing the opinion that certain people should be allowed to die, though ample resources exist to keep them alive, or should even be killed is relatively socially acceptable. Voicing those views does not necessarily lead to social ostricization.
Unfortunately, these attitudes, and the debates they drive about whether some lives are worthy to go on, and whether some people should be entitled to the same legal and human rights as everyone else, are not confined to classrooms. They crop up in current events, too, in the idea that locking people up regardless of whether they have ever shown any violent propensities is acceptable or that it is not important for certain kinds of people to be able to go out in public. It isn’t hard to see that people with disabilities are not always considered full people.
The names we read, the ones we remember, tangibly demonstrate what that sentiment looks like when it is taken to its logical conclusion. If disabled people aren’t really people, if we live less than 100% of the value of human lives, killing us is not as wrong as murder generally is. Depending on the particulars, it may not be very wrong at all. When we remember those people, when we read their names and assert that they were real, valuable human beings by remembering them, we’re respecting the dead. We’re also protecting the living. We’re insisting that, despite what some people say, every single human being is worthwhile.
Memory matters. Remembering says something about the value of the lives we remember and the value of lives like them still underway. Day of Mourning is about the dead, about remembering people who deserved better, asserting that their lives were worthwhile and that what happened to them was unacceptable. It is also about asserting that we, the living, deserve better, too.