“What can I do?”
Access is an all-consuming endeavor in a disabled person’s life. I love that the disability community learned to frame it that way: it emphasizes that the problem is not the person, their body or their condition; the problem is society’s indifference.
Many accessibility solutions are structural; they require collective action — constructing spaces such that wheelchairs can be used within them; hiring interpreters and providing caption services… these are not actions that can be undertaken by a single person.
What is unfortunate about this, though, is that it relieves the fully-abled individual of hir responsibility to hir disabled counterparts. It means the fully-abled individual can safely get away with never thinking about disability, and the connection between societal access and hir actions specifically, at all. Sie never has to consider how her attitudes and behaviors very really shape the environment of hir peers. Sie never has to stop and think, how does what I am doing affect those around me, and how can I change that to make things better for them?
When all solutions are collective, your own actions become invisible. Your contribution to the world around you becomes invisible. The power you hold over other people becomes invisible. Your status as part of the problem becomes invisible.
But what can you do?
I thought of what I think is an illustrative example the other day.
When I was attending college, I had a lot of walking to do — at least a mile from my dorm to each class, and of course the walking in between. It was exhausting, and it was one of the major factors that led me to drop out the first time.
One of my classes was on the sixth floor of the humanities building. Another was on the fifth floor of the math and science building. And I had several choices on how to reach those points:
1. The elevator.
2. The escalator (in the math building).
3. The stairs.
Here’s the irony: the only accessible solution was the stairs.
I have a physical disability. That disability is also invisible. I can climb stairs, but when I do it precludes any remotely physical activity (up to and including sitting upright) for a couple days, compounded the more flights I have to climb.
This was not teneble, not when I had to do this three times a week, and that doesn’t even include the energy required to walk to the building in the first place, to sit in the hard uncomfortable chair for an hour taking notes, and the energy I needed to do the home assignments, projects, and studying necessary for the class. And that doesn’t account for my four other classes!
So: Why couldn’t I use the elevator?
Well, because everyone else was using the elevator — so many people that there was a long line and usually a 15-20 minute wait before you could step foot in one.
Again, I have an invisible disability. I could have pushed to the front of the crowd every day, jostling my way through dozens of people to weasel my way in the door. And that would have made me kind of an asshole, you know?
So what do I say? “EXCUSE ME, I’M DISABLED, I NEED TO GET IN.” And everybody would turn to look at my lanky eighteen year old body, with no visible deformities, no mobility aids or other assistive devices or personal aide or caretakers, having walked in the front door just fine. And then everybody would be thinking that I was kind of really an asshole.
Complicating things is that at the time, my severe anxiety was undiagnosed and untreated. There was no way I could have even squeaked out a humble “excuse me,” much less forced my way through the crowd, much less shouted for all to hear that they needed to get out of my way and give me “special treatment.” Oooh, how I loathed special treatment. It made me feel like I was, you know. Disabled. Not normal.
This crowd existed in front of every elevator in every building on campus. Not all of the people waiting at that elevator were healthy enough to take the stairs. There were surely others with invisible illnesses like me, and others yet who just weren’t in the greatest shape, and so on. But the majority of those folks took the elevator because it was there. And those folks are the ones who made my life, and my participation in society, that much harder back then.
So: Why couldn’t I use the escalator?
Here’s a different problem. A lot of kids used the escalator. An escalator, as you know, is basically a revolving set of stairs that moves upward, so that you don’t have to do any climbing to get up to the next floor.
But here’s the problem. Everyone who took the escalator? Walked up it.
Now, if I wasn’t going to be climbing the stairs, why the hell would I go and climb the escalator? The entire point is to spare me that climb, right?
But I couldn’t use it that way. If I stood still on a single step, that would clog up the line of kids studiously climbing, climbing. They were narrow enough for two small people to stand side by side, but then not everyone is small, and we also had to carry our bulky book bags and such with us. So if one person stays still, there is a bottleneck effect — only a trickle of people can squeeze through, and everyone else gets stuck behind you standing still.
Assuming everyone in that crowd is healthy, someone who stands like that and creates that kind of jam is, again, kind of an asshole — right? So what was I supposed to say? “I’m disabled, sorry.” While everyone stares at the back of my entirely healthy-looking body for the next few minutes.
So: what was I left with? Well. The stairs were pretty free. Maybe I could have started to carry a cane, just to visually signal to people that I was sick. Even though I didn’t need that cane and wouldn’t know what to do with it. Do I hunch myself over, tousle my hair and do my best to act like I’m ninety years old and barely hanging on? Just so people would maybe, just maybe, believe me?
Or maybe… maybe everyone else involved could have stopped and thought about how their actions were affecting other people. Because I sure as hell wasn’t the only one facing this dilemma.
Just because the elevators and escalators existed did not mean they were therefore accessible to the people who needed them. Because accessibility is more than structural. It also counts on the actions of each individual.
Yes, you are part of the problem. There are times where you are in the way, where your actions are creating difficulties in someone else’s life. And you probably can’t even see it. But, you know — maybe you would — if you started looking.
By amandaw 20 October, 2009. accessibility, blaming accessibility, advice, barriers to access, disability, exclusion, fibromyalgia, illness, invisibility, invisible disabilities, invisible disability, isolation, me, participation, passing, personal, privilege, social inclusion, social treatment, structural vs. individual