Friday, February 1, 2013

Hackathon "for Autism" with no Autistics? Guest post.

This is a guest post from T in regards to the
Bing Fund autism hackathon in Seattle this March. Note that I, K, am not opposed to the apps, or the hackathon, but am greivously concerned about the attitudes expressed implicitly and explicitly in the advertising.

But T alerted me to this. And T wrote about it, so I will shush and let T speak. 

I'm an autistic adult. I'm also hearing impaired. I wear two behind-the-ear hearing aids and have rudimentary signing abilities because I chose to try to "pass" rather than go to school with other kids that were Deaf or Hard of Hearing.
No one ever calls hearing impairment a disease. No one uses the word "affliction" or "devastation" with it. The early years with a hearing impaired child can be difficult because of communication issues. It turns out that a lot of the early speech and behavior therapy I received from my mother(also hearing impaired) and professionals is nearly identical to early speech and behavior therapy for autistic children, because the two syndromes are often confused with each other. Autistic kids get diagnosed as hard of hearing, while hard of hearing kids get diagnosed as autistic.
I was never diagnosed as autistic. but I am both. I have personal experience with assistive living devices and services for my hearing impairment, that run the gamut from FM systems to hear the teacher over a noisy classroom, programmable hearing aids, TTY services, special education services, and so on. I was offered someone to take notes for me in my big classes in University, and extra accommodations for a quieter exam room if I needed it.
These things don't really exist for the autism spectrum. Instead, we have millions spent researching the causes, rather than developing similar devices and services for autistic people. If they did that with hearing impairment, I would not have hearing aids, or all the innumerable programs I benefited from. I'd be erased and forgotten. They do have special education programs for autistic people, but its all about teaching autistic kids how to pass for "normal", rather than helping them coexist.
That is the experience of autistic people today. I can't imagine an event for developing stuff for hearing impairment that wouldn't have people with hearing impairment there to speak and judge. It just isn't done.
But it is done for autistic people, because we can't be trusted to represent ourselves, or our needs. Autistic adults don't need services or assistive living devices, or any of that apparently. And an event on helping autistic kids? Definitely don't need autistic speakers!
That's what the Bing Fund has done recently. They announced the "Hack Autism" event, where programmers, designers, engineers, and so on, all come, learn about autism, and try to create new devices to help autistic people cope and adjust to society at large. However, they talk about autism as a disease, saying it "afflicts" people. It isn't communicable(except via genetics). Imagine if people talked about hearing impairment that way. "Oh, I'm so sorry your family was afflicted with Deafness." Jesus fucking christ, that's about the most dehumanizing thing they could say about autism!
And then, they have the nerve to only have neurotypical people as speakers. And not just that, parents of autistic people, rather than autistic people themselves. My mom can speak about hearing impairment, because she is hearing impaired. But she can't speak about my autism. I can. Not her. She doesn't know my experience.
The other speakers are researchers into the causes of autism. Some of them do treat and counsel autistic people, like Dr. Gary Stobbe. But he isn't autistic himself.
This would be like having only white people talking about what black people need to fight racism.
And to top it all off with a steaming shitty ableist cherry: "These prototypes will be judged by a panel of subject-matter-experts and parents." Devices made for people like me, aren't even being evaluated by people like me. Not by people who have worse issues with sensory environments than I do. Not by people who have harder issues navigating or remembering tasks than I do. Not by the actual target fucking market. We aren't being treated with any dignity or respect here, because we can't even be trusted to evaluate these devices for ourselves. No, it has to be neurotypical people, talking on our behalf, doing things for "our own good". This is so unbelievably paternalistic, that it can only happen with autism. This would almost never happen with other disabilities like hearing impairment.
Oh, and let's not even mention how autistic adults over 20 apparently don't exist or don't need devices and services. Dr. Gary Stobbe, one of the speakers, runs an adult autism clinic. He should know exactly what kind of services there are to help autistic adults transition: there aren't any.
And then, there's a distinct eau de classism here as well, with the mention of mobile/tablet. 85% of autistic adults are unemployed. So how exactly is an app on an iPad going to help them? You're damn right it doesn't.
So fuck you, Bing Fund and the Hack Autism organizers. Get some autistic activists to speak to you. Get some autistic people to judge the results. Get some autistic people involved. If you keep treating it like a disease, keep treating us like we can't represent ourselves or judge these devices ourselves, then we'll continue to have problems in society. Because its not us that are messed up; its a society that doesn't fit our needs and doesn't fit how we interact with the world. Few people would tell me I'm a burden on my family for being hard of hearing, but you're telling me I'm an affliction for being autistic. Look up the social model of disability, and oh yeah: Fuck You.

About T: I'm a Canadian software developer at a major multinational company, and I am both hard of hearing and mildly autistic. I love to DM D&D(all versions and settings), watch Star Trek, and design video games. 


Unknown said...

Hello, we are absolutely open to suggestions! Please email us at bingfund at -- we love the ideas you're throwing out there, please don't assume we aren't listening ...

Neurodivergent K said...

It behooved you to go looking. It's not even hard. You have an ASAN chapter FFS. YOU had the responsibility to come find US.

And your email is hard to find. And your twitter guy needs Some Talking To. Read this as: He's an ableist jerk. I highly recommend being better than him.

Anonymous said...

I really enjoyed reading your post. Your perspective really helps me to understand my son who has autism.

If you could tell the organizers of this event what would be helpful to you, what would you say?

Anonymous said...

I really enjoyed your post. I try really hard to understand my son who has autism and this perspective really helps me.

One question...if you were able to contribute to this event, what would help you?

Thank you.