The other week, I took a short trip to Aldi to nab some bargain merino tops (man, I love Aldi). As dad pushed me in my wheelchair to the cash register, I dumped my purchases on the counter, got out my wallet ready to pay, and smiled and made eye contact with the cashier. He promptly looked away from me to dad and asked, “how are you today?” The way he reacted, dad could have been pushing a trolley full of discount TVs instead of an actual person.*
Being treated like the Invisible Man** is not a novel experience for a disabled person. Sometimes it seems appearing in public with a mobility device or – heaven forbid! – a carer can render a veil of irrelevance over you. It’s not just a personal annoyance that makes it hard to get service in shops – being viewed as incapable or as though you don’t exist at all is part of a wider phenomenon by which disabled people’s voices are overridden and obscured by able-bodied people who make decisions for them.
Just look at Autism Speaks, one of the world’s most recognisable autism charities. Widely derided in the autism community, Autism Speaks has come under fire for vilifying and dehumanising autistic people, its history of promoting a link between vaccines and autism, and its complete absence of autistic board members. The only autistic member of the board (ever!), writer John Elder Robinson, quit in 2013, stating he “[could not] in good conscience stand by” the activities of Autism Speaks and its founder, Suzanne Wright. Robinson wrote:
The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community. Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions. The priority cannot be autism parents, or autism grandparents. It’s got to be actual people with autism.
He (and others) criticised Autism Speaks for doing very little for those who they purport to help. Despite its considerable media power and fundraising efforts, only 4% of their budget is devoted to funding services for the autism community. (They are primarily focused on research, but even that is not directed towards the needs of autistic people.)
I believe Autism Speak’s failure to service the needs of the autistic community is a direct result of their refusal to acknowledge the lived experiences and viewpoints of autistic people themselves. As Robinson said, this ultimately supports a view of autism as a “condition of children and infants” or a “diseased group that needs to be eliminated.”
An autism charity that is described as an “evil organisation” by those who it is supposed to represent. Some bonehead cashier overlooking me at Aldi. Even those (particularly in the medical profession) who are quite happy to talk about and over me but not to and with me. Sometimes it seems like society’s default reaction to disability is to speak over and overlook, and frankly, it’s really fucking dehumanising.
So in case you happen to encounter someone with a disability (yes, it happens, considering we represent about 20% of Australia’s population), don’t ever forget the core dictum of representation: nothing about us, without us. Or if that’s too complicated for you (Aldi dude, I’m looking at you), try treating us like actual human beings.
*You might be wondering why I didn’t just school this guy with what was running through my head at the time (ie, this post’s title). Or why disabled people don’t take every opportunity to attempt to correct every example of ableism they come across. My answer: I’m tired. Really fucking tired. Not only from my illness, but from the way I’m treated because of it. I can’t always be “on”. And sometimes, I just want to get my special buy from Aldi without having to educate some backwards, B&S attending bogan about disability politics.
**Probably a poor analogy, as the Invisible Man became quite a sensation, and was kind of an asshole.