Awareness is not enough
author: john loeppky | editor-in-chief
Disability-related awareness months are about as fit for purpose as the American medical system. April, for example, is autism awareness month, where groups such as Autism Speaks (labeled by many autistic folks as a hate group, bent on a medical curing model as opposed to support of those with autism) spout on and on about the perceived needs of those with autism.
The main issue here is that most of those organizations are run by non-autistics (allistics), framing their own experiences in a way that gives them the megaphone instead of giving it to those with the disability. This often manifests as parents of those with disabilities not being mindful of the space they take up and talking over a community that can and should speak for themselves.
My issue with awareness months, though, goes a tad bit further than parent-turned activists who are convinced they know best. Awareness months do nothing more than create half-assed shows of solidarity that will be quickly forgotten. We just closed cerebral palsy awareness month, and I have to say that the only positive I ever see out of that particular set of 31 days is when those with CP use the time as a safe-ish space to declare publicly that they are disabled (a long and involved process for many.) For me, it doesn’t matter if I scream about my disability to the heavens – I’m still going to be disabled the other eleven months of the year when the interest shifts from a torrent to a trickle. One friend asked me what I did for CP awareness day; I told him I fell down a couple more times than usual. Days mean very little to me. Even though I’m a writer, actions speak far louder than words.
If we really want to make a difference on disability awareness days, which are just another way we’re tokenized (because many able-bodied folks can only dare to loudly care one day a year; apparently there’s a quota), let’s provide support for those who need it. How about going on a site like GoFundMe and sending a few extra dollars to those who are crowdfunding for a wheelchair, or for therapy to help them heal from ABA-related therapy forced upon them as children, or for families struggling to find support in Northern Saskatchewan? We can talk about CP or Autism awareness, but until we decide that our caring nature applies to more than one day in a year, I can’t really take many folks seriously.
I’m loud and proud about my disability. Consider me your daily reminder that CP exists. As I’ve written about before in the pages of this newspaper, the acronym shouldn’t be odd to you. We have CP rail, CP toilet tissue. and CP Distributors (I like to imagine their tagline in an alternative universe is “sending cripples wherever they please”). It’s the day-to-day that matters, not the one day we’ve decided to care.
Perhaps more importantly, though, there is awful gatekeeping that goes on in disabled communities. Who is disabled enough is a question often posed — often implicitly, or in private conversation. One twitter account that I engaged with a few days ago took it upon themselves to create an error-strewn Twitter list of those folks they thought were self-diagnosed with autism and therefore (in their eyes) not legitimate.
I often talk about having to choose which hill to die on but, for me, here’s one: self-diagnosis is valid. I was anxious and depressed long before a doctor told me the medical establishment could confirm that. It’s hard enough to get a diagnosis in a flawed universal healthcare system such as ours, let alone south of the border or in places that aren’t first-world countries. This Twitter troll’s gatekeeping, preventing those who are trying to match up how they experience the world with a complex and frustrating medical apparatus that is set up against them (particularly if they are anything other than white, straight, cis, heterosexual, and male) is simply morally reprehensible. There are too many barriers facing disabled people for the claiming of an identity to be entrusted to an instrument of the state that has, in the not so distant past, recommended eugenics for those of us with a disability.
It’s important to note that, in that Twitter exchange, I needed to centre myself as an allistic and recognize that it shouldn’t just be those with autism doing the heavily lifting, even with issues inside of the community. These perceptions of who can and can’t claim the disabled identity are taking the first step toward systemic persecution against disabled people without even realizing it.
The straw man anti-self-diagnosis argument so often repeated – that these self–diagnosed folks are claiming a disabled identity for some sort of benefit – is so easy to blow down it’s almost funny. To think that claiming a disabled identity has no negative effects is a privilege born out of ignorance. The only way many of us could think that we won’t be discriminated against overtly is if we locked ourselves in our houses and didn’t open our laptops.
So, do away with centering your advocacy efforts during awareness months. Show up for each other, understand (medical model wording alert) the comorbidities that join together different disabilities, and know that someone claiming their identity as a disabled person is a radical act of defiance. Defiance against a medical system set out to kill them, a social system built on their backs, and an educational system that can’t hope to handle their needs with the current climate. Step or roll back, breathe in, and fight with us every day of the year, not just when it’s convenient.