This is my fantasy: I’m standing at the Main Street corner in my little New Jersey suburban downtown, waiting to cross the street. As usual, I’m stressed out by the giant SUVs whipping by, oblivious to the crosswalk. But then I remember the “alterations” I made to my ID cane. I whip it out, and it automatically unfolds with a satisfying series of clicks (that part is real, actually). I stick it out in front of me, into the crosswalk. I wait for something to happen. If the next car stops for me, no drama. But if not, it’ll run over my cane, and… POP! “Oh, I’m so sorry, did the razor blade on the end of my white cane damage your tire when you ran over it? I hope it didn’t scrape the paint too badly!”
Oh, that ninja cane! What else can it do? Tune in to the next episode of Disability Avengers to find out…
Ok, maybe I’ve been reading too many of my 11 year old’s adventure books (if you haven’t read Spy School, I highly recommend it). But just think, if my cane could actually DO something, wouldn’t it be a lot more empowering?
I have had a lot of these fantasies in the last nine months, since I lost some of my vision to a multiple sclerosis flare-up. I am doing well overall, and I am continually amazed at the healing powers and plasticity of our brains. I don’t generally carry my cane, since it’s kind of a nuisance, and it’s not for my direct benefit — just a visible signal of my disability. I really don’t need it at all if drivers are following the traffic rules. The one situation that stymies and terrifies me is having to suddenly jump backwards. Part of my brain, the part that is very sensibly worried about the fact that I can’t see much if I try to glance over my left shoulder, shouts, “no, don’t do it, there could be a cliff!” and I freeze up.
Should jumping backwards be a regular part of going for a stroll to the library? One would think not. But drivers around here seem to be clueless, oblivious, or just plain obnoxious. When everyone follows the traffic rules, I feel comfortable. When they don’t, I feel helpless, scared, and humiliated. I feel disabled.
During the past few decades, the burgeoning field of disability studies has shed new light on situations like this. One of its most important insights has been that disability is not inherent in an individual; rather, it is the mismatch between the person and his or her environment that creates the disability. This is the logic behind wheelchair-accessible entrances and bathrooms, and other accommodations required by the Americans with Disabilities Act, passed a quarter century ago.
I find it easiest to intuitively grasp this idea when I separate it from the distress of losing an ability to illness or accident. Consider this sci-fi scenario: everyone but you grows a third arm. You don’t really mind not having a third arm; you felt complete with two. You feel normal, competent, satisfied. But then, the car companies start designing cars that require 3 arms to drive. Sorry, but you can’t drive anymore. Now, you feel helpless, stuck, and humiliated. Without that third arm, you are disabled.
Perhaps you don’t mind not being able to drive – you live in New York City anyway. But people are constantly impatient with you, because you’re slower than average counting out change, and when they try to hand you your lunch and your drink at the same time, you bobble it. When you say, “sorry I’m so slow, I don’t have a third arm,” sometimes people are friendly, but often they get defensive, and say things like, “well, I’m sorry, ma’am, but how was I supposed to know? It’s not obvious. You looked normal to me, from this angle.”
This hypothetical is not a complete analogy to my situation. I really do miss the eyesight I used to have. I feel some inherent loss, and an adequate environment can’t entirely make up for it.
It sure would make a difference, though, to be able to adjust my environment to my capabilities. I can’t wait for driverless cars!
The potentially easiest adjustments to my environment can happen right away, without new technology. What would help me the most is a widespread change in attitude. We never know who around us might need a little extra consideration, patience, or assistance, given the one-size-fits-all environments we regularly navigate. If we started by paying a bit of attention to the people around us, and giving them the benefit of the doubt, a lot fewer people would experience their environment as disabling.
Ironically, now that navigating is harder for me, I stop more often to help other people. I feel badly that I was often the impatient one, before I understood what people might be experiencing. Presumably I often still don’t “get it.” Hopefully I don’t need to personally experience each particular kind of person/environment mismatch to be able to address it empathetically. Hopefully we can all reflect a little, and figure out how to be an enabling environment for each other.
James Alan Fox, Airports are Blind to Fliers Like Me, USA Today, July 26, 2015.
Paul Longmore, The Second Phase: From Disability Rights to Disability Culture, Independent Living Institute, 1995.