Reports from a Resident Alien

Yesterday I was walking home from doing errands at the grocery store, pharmacy, bank, etc. The snow was ankle-high, but thankfully the sidewalks had been shoveled, so that I didn't have to wade through too much snow. Coming the other way, presumably headed to the same shopping complex I'd just left, was a guy in a power chair. He wasn't on the sidewalk, though; he was in the road, hugging the curb, dodging 30-mile-an-hour traffic. He must've seen me looking at him because he looked back at me and explained, "It's the snow. I can't get to the sidewalk."

I was confused. The sidewalk had been cleared. Why was he still...?

Oh. As I walked further, I realized that the sidewalk had indeed been cleared; but at the curb cuts on both sides of each block, where the snow plow had left the usual piles, the snow crew had only scooped out a narrow pathway, about a foot wide, through each big pile of snow.

Needless to say, the average wheelchair cannot fit through a foot-wide gap; so my neighbor had been forced to trust luck and the judgment of the average Ohio driver--not exactly a good trade for being able to get to the grocery store.

I'm relating this incident because it reminds me of a very important fact: When you are working with accessibility, with assistive technology, or with services for the disabled, you absolutely need first-hand experience of using that technology or that service. Otherwise, you will inevitably miss vitally important things that can make what you were trying to do absolutely useless.

I'm a biomedical engineering student who wants to go into designing assistive technology. I have friends who use wheelchairs. The school I go to is wheelchair-accessible, and I see people taking advantage of that every day. And on top of all of it, I'm autistic, I have trouble filtering sensory input, and that means I almost never miss a detail, to the point that all that detail can overwhelm me. I had walked that stretch of road once already on the way to the store, and seen the way that the snow crews had made only a very narrow path through the piles of snow. And yet--I still had to be told straight out why you couldn't get a wheelchair onto the sidewalk.

Why? After all, you'd think that if anyone would notice, it would be somebody like me. But I have the one disadvantage that makes it almost impossible for me to gather every relevant fact: I don't use a wheelchair. I've never even sat in one for more than an hour. And that simple fact trumps every other advantage I might have when it comes to understanding accessibility.

You know what's scary? There are a lot of people like that--people who know a lot in their heads, but don't have the experience they really need--designing the vast majority of the assistive technology and accessible buildings and education and therapy and all kinds of things that disabled people use. They aren't disabled themselves, or else they don't have the same disability as the people they're designing things for. They've got the exact same disadvantage I had when I couldn't understand why my neighbor was in the road instead of on the sidewalk. And, in many cases, it seems they don't even really understand that they have this disadvantage at all.

If there's one thing that's the absolute most important factor in designing stuff that will be used by people with disabilities, it's that you've got to have people who have the disability in question working on the project. I don't mean a twenty-minute focus group. I don't mean a survey that gets mailed out and replied to by 3% of the recipients. I mean actually getting help from the people who are going to use your product or your service. They're the real experts on what they need; why in the world are people sitting back and saying, "Hey, I've got the degree; they're just the user"? Uh-uh. No. That's the way to design inaccessible buildings, unusable technology, and services that do more harm than good.

I didn't realize for some time that there were more people than just me who had identified this problem. Apparently, some people are working on changing it. There are some engineers who are using a "participatory design" strategy--involving everyone who will be working on or using a product in its design. And of course there's the "user-centered" approach, which can be anywhere from a meaningless buzzword to something actually approaching consulting the users as experts on what they need. But it seems not to be enough. Most of the time, it's still "I'm the expert; you're not; shut up and pay me."

I'm an engineering student, so of course it's from an engineering perspective that I think about this kind of thing, but there's a more general concept here: You should never, ever do something that involves disabled people without actually having people with that particular disability involved and active. How are you supposed to know what they need, if you don't ask them? That goes for doctors, teachers, therapists, employers--really, for everyone. After all, you'd have to be a hermit never to meet, work with, or work for someone with a disability.

On the disability-rights corner of things, there's the concept of "nothing about us without us"; and while that's usually brought up more in the context of law-making and self-determination, it goes for design too. If you're the one who's going to be making use of something, then you're the one who knows the most about what you need--not the engineer, not your teacher or your therapist, probably not even your parents or your doctor. If they don't ask you what you need, how will they ever know? The sad thing is that much of the time, people don't even realize they need to ask, and they're oblivious while we're all stuck dodging cars on the road because we can't get onto the sidewalk.