It’s not that, as Andrew Pulrang wrote recently, the people who use disability simulations to raise awareness aren’t (usually) well-intentioned. It’s that, as Emily Ladau wrote, they’re not really effective, they don’t have a whole lot of logic behind them, and they’re kind of insulting to disabled people anyway (read her wonderful essay here).
I’ve always seen participating in disability simulations as something akin to the mandatory 40 hours or volunteer service that the Ontario government makes students do while they’re in high school. It’s a well-intentioned policy, it’s certainly not a bad thing to make students do, and hopefully they get something out of it. But even if a student does all 40 hours in one year with an agency – by the end of 40 hours, they’re probably just only getting a sense of how things work and what they’d really like to do. It’s not a lot of time in which to get involved with anything in-depth. The same way, when someone sits, say, wheels themselves around in a wheelchair for a day, or has someone else wheel them around, how much can they really learn about the experience of having to use a wheelchair? To be honest, I don’t know whether you could fully appreciate what even the experience of living one-handed is like after just a day of it (unless you were willing to let me make you try a LOT of stuff).
But that’s not even why Hayley Bicker's “100 hours in a box” rubbed me the wrong way.
Hayley Bicker Puts Herself in a Box
Hayley Bicker, upset by an incident in the shop in Britain in which she worked where no one offered to help a mother when her autistic child got upset to the point of physically acting out, decided to raise awareness about the sensory sensitivity and communication difficulties that can accompany autism. She did this by spending 100 hours in a large glass enclosure in the store, her objective being to show that the difficulties that she had hearing and communicating through the glass and the sense of isolation that these difficulties produced for her was what autistic children experienced every day.
First, let's give credit where it's due – Hayley Bicker saw something that upset her and went to great lengths to do raise awareness about it. She got a charity involved and raised some money that went toward buying support equipment for families with autistic children in her community. There’s no doubt that her heart was in the right place, and kudos to her for acting when most people would not have.
Hayley Bicker and Why "100 Hours in a Box" Is Problematic
I’m not sure how Hayley Bicker's disability simulation raises awareness of issues associated with autism when she was the one in the box. She already knew about the issues. I’m not suggesting that other people should have been in the box, because I think that the logic behind the whole thing was a little flawed to begin with, but the odd execution of this particular disability simulation arguably made it even less effective than standard disability simulations, to my mind.
I thought about this later, however. My initial reaction after hearing Hayley Bicker say, "This is what autistic children experience" in a television interview was that she'd missed a couple of more important ideas
- You can't (and shouldn't) say what autistic people experience if you're not autistic. I guarantee that if I said to someone who's always had the use of both hands, "Make a list of what's difficult for me to do on a daily basis," her or she would miss things. Why wouldn't that be the case? I'd not expect that person to be able to speak with authority on my disability, any more than I should be able to speak with authority on the experience of what someone with, say schizophrenia experiences on a daily basis. The difference between me and Hayley Bicker is that I would not presume that I could, even though I've learned about schizophrenia in school and know people who have it. Bottom line, if you don’t have a given disability, you don’t know what people who have it experience, and people like me get irritated when you presume that you do know what we experience. Who knows, maybe you educated guesses based on reading or on observation or on experience with someone in your life who has that disability come very close to describing what they actually do experience, but you don’t know. I'm not as militant as I sound on this - even if Hayley Bicker had said, "I consulted with some autistic people before designing this" or "Some autistic friends have told me that this is what they experienced as children," I'd be prepared to give her a lot more leeway.
- Not every autistic person experiences everything the same way. From what I understand of autism (acknowledging that I’m still very much learning about it), it manifests differently from person to person. Some people may struggle very much with say, sensory issues, some not so much. Even if the experience of being in a glass box perfectly described what communication felt like for one autistic person, it may not describe it well at all for another one. If we’re going to spread awareness, let’s do it accurately.
The glass box itself is also problematic. While I understand the point that Hayley Bicker was trying to make, it’s my understanding that autistic people are trying to get away from imagery that portrays them as shut in their own little world and unable to communicate with the rest of us. Who wants to be associated with the image of being boxed away while the world goes on around you? We’ve already got groups like Autism Speaks speaking of autistic children as “gravely ill” and equating them with children who have gone missing. Awareness initiatives need to emphasize as much as possible that autistic people (and disabled people in general) are contributing members of our families and communities, and that communication barriers are largely society's constructions that society must remove. Enough boxes, separation and isolation.
If Not Disability Simulations, Then What?
Andrew Pulrang asked what the alternatives are to disability simulations. I think that one alternative is making sure that disabled people have the means, vocabulary, and opportunities that they need to talk to others about what being disabled is like and what it means to them, if they so desire. I've worked with disabled people that others have assumed aren't able to describe what their disability experience feels like, and heard them do with a great of insight. But I didn't hear this from them right away. They first needed to know that it was safe to express those thoughts to me.
I also think that we need to make sure that non-disabled need to know that it's okay to ask, "Is it okay if I ask you some questions about your disability?" if they want to. Not that disabled people should feel obligated to say "Yes", or that they have to answer every question that's asked. But I think that non-disabled people want to ask questions, that they're genuinely curious, and are often unsure about which questions are okay and which aren't, or if questions are even appropriate. Personally, even though I've heard some questions from non-disabled people that definitely are too personal given the relationship between the two people, I would much rather that people ask and, if necessary, have to pleasantly say, "I'm going to pass on that, if you don't mind, because it's a little too personal, but is there anything else that you want to know?"
This way of learning about peoples' disability experience through talking with each other may take some training and practice for both disabled and non-disabled people, but I like it much better than the idea of learning about disabilities through disabilities through disability simulations.
If you have ideas for alternatives for disability simulations, Andrew Pulrang is collecting them over on his blog.
What do you think? Am I being too hard Hayley Bicker?