One Saturday night in the early ’80s, when I was in college, I came home late, looked in the bathroom mirror and found the entire right side of my wheelchair covered with blood.
Don’t worry–it wasn’t myblood.
At the time I was going to a lot of punk-rock shows. I liked the music, but I also liked the energy, the danger, the sense that anything could happen and frequently did. The whole scene possessed an in-your-face, “I have a right to be here too and screw you if you can’t deal with it” vibe that intoxicated me as a young gimp–although I didn’t pay much attention at all to disability issues back then. Basically, I was just another geeky suburban kid who lived with his parents and went partying in Hollywood on the weekends–I just stuck out in the crowd, being on wheels.
And not just any wheels either, but a banged-up 1970s-vintage E&J Premier that I’d used–and abused–since I was 12. The thing weighed twice as much as me and looked like it had been to Beirut and back. The Naugahyde was cracked and peeling, the tires were bald, half of the spokes were gone, thick veins of rust showed through the chrome on the hand rims, and the rubber tips on the brake levers had crumbled away, leaving sharp pieces of metal jutting out from the sides. The chair fit right in at a punk club–it practically radiated hostility and evil. “The Deathmobile,” people called it.
There were two unwritten rules at the shows I went to: (1) If you don’t want to slam-dance, stay away from the pit (usually the middle of the dance floor and the area right in front of the stage); and (2) Don’t mess with the crippled guy (there was only one). I obeyed Rule 1 religiously (brittle bones and slamming don’t mix) and quite a few of my friends stood ready to inflict violent punishment on anyone who broke Rule 2. On this particular night, however, some testosterone-damaged knucklehead with eight too many beers in him came flying out of the pit and lunged straight at me. Fortunately for me, he slipped in a puddle of … something–beer? vomit? who knows?–and fell squarely on my chair’s exposed, lethal brake lever. The metal punched through the guy’s jeans and continued on up his thigh with a rrrrrip that could be heard on the other side of the room. The scream that followed was even louder.
At that point the guy limped off, to get first aid or bleed to death or whatever, and I went back to watching the show. I noticed something warm and sticky on my wheel as I headed back to the car afterward, but I didn’t think twice about it until I got home and saw the gory aftermath. It was after 3 a.m., but I wound up spending the next two hours scrubbing the blood off my chair. My folks would have had a conniption if they’d seen it the next day.
There doesn’t need to be bloodshed for me to have a good time, but since that night I’ve never let the possibility of it scare me into staying home. In retrospect, I like to think that I–despite my lack of crip consciousness–was doing my own small part for the disability movement simply by going out and being seen. For a person with a disability, going out dancing can be a political act.
Sadly, though, most gimps don’t like to dance–or do anything else that risks drawing attention to themselves in public. Not only are we more likely to be unemployed than people without disabilities, we tend to be more isolated and antisocial as well.
In 2000 the National Organization on Disability commissioned a Harris survey to measure the “community participation” of disabled people. In nearly all the activities named in the survey–voting, volunteering, attending religious services, or just going out to restaurants or movies with friends–people with disabilities lagged behind in their level of participation. More than a third of the disabled respondents described themselves as “completely uninvolved” in their communities, compared with a fifth of those without disabilities.
My own personal experience with other disabled people tends to support these figures. As I’ve gotten to know more and more people with disabilities, I’ve been struck by how many of us are reluctant–even afraid–to leave the house for reasons other than doctor’s visits or emergencies. If the rest of the American people behaved this way, the federal government would have declared a nationwide War on Agoraphobia years ago. But since people with disabilities have always been isolated–from each other as well as the rest of society–this quiet fear of the outside world remains unremarked-on even within our own community.
I’ve never taken a formal survey on the subject, but every so often I ask disabled acquaintances what they feel inhibits them from going out in public. Aside from issues of money and accessibility–joblessness, lack of transportation, inaccessible public facilities–the main barriers I hear about are emotional and attitudinal:
- “I feel too vulnerable.”
- “I feel invisible.”
- “I feel like everyone is staring at me.”
Part of me wants to pick up a Wiffle bat and start swinging when I hear statements like these. I’m only four feet tall, I can’t walk, my body is oddly shaped and my bones are like Styrofoam, but you don’t see me staying home watching television every night–what’s their excuse? I’ve been to hardcore punk shows, for chrissake! And if we in the disability community are unwilling to go out and mix with the general public, then how do we expect to convince them that we even need an ADA, anyway?
We don’t like it when the general public regards the disability community as nothing more than a bunch of litigation-crazed whiners, but if the only crips they ever see besides Christopher Reeve are the ones waving picket signs or filing lawsuits, what else can we expect them to think?
Another part of me, however, has had each of those feelings, too. In a way, I’m lucky, because I was born a gimp–I have no pre-disability frame of reference to struggle with and that makes it a little easier to shrug off the ignorance and prejudice around me. But even so, coping with the unpleasant details of life with a disability can leave little time for fun or frivolity, and the damage that’s been done to one’s self-image can’t simply be wished away.
So, I think I’ll address each feeling individually.
Vulnerability. When I was a kid, I did a lot of stupid things. All kids do–the difference in my case was that my stupidity often landed me in the hospital with a broken bone or two. My parents could have tried to control me, to forbid me from engaging in an ever-growing list of activities, but they didn’t–they preferred to let me learn from my own mistakes. As a result, I also learned that invulnerability is an illusion. Most people don’t get that lesson until much later on–when their vulnerabilities sneak up behind them and bite them on the ass.
Feeling vulnerable isn’t necessarily a bad thing. Feeling invulnerable is what’s truly dangerous.
Invisibility. I get around this one by being a loudmouth. Anyone who’s seen me cut through a crowd, booming, “EXCUSE ME,” at the top of my voice, has firsthand knowledge of how obnoxious I can be. I try not to be rude for rudeness’ sake, but if I have to momentarily disregard nondisabled notions of “politeness” to keep from being stepped on, I have no problem with it. No one ever won rights or respect by being a shrinking violet.
Staring. One person staring at you can be irritating. A roomful of people staring can communicate the message: “You don’t belong here.” This experience isn’t unique to people with disabilities; many feminists in particular have written about the disempowering effect of what they call “the male gaze.”
With us, though, it’s more an issue of curiosity–people stare at someone in a wheelchair because they’re still not used to seeing us wandering around unsupervised. The trick is to let them stare as we go about the banalities of our daily lives, eventually bringing them to the point where they go find something else to gawk at, like a traffic accident.
And if they don’t? That’s their problem. I have a right to be here too, and if they can’t deal with it, they can screw off.
On Sunday afternoons during the summer, one of my favorite neighborhood bars sets up a barbecue out front and has a DJ spinning records inside. Not long ago, the owner of the place (whom I’d seen a million times but never actually met before) came over and introduced himself. We chatted for a bit, and then he said, “Hey, do you mind if I ask you something?”
“Depends on what it is,” I said.
“I was just wondering what you thought of the … accessibility … here.” As dive bars go, the accessibility is very good, and I said so. There are no stairs anywhere, and I can actually use the bathroom, which is key. The only complaint I have about the place is that the tables and chairs are all pub-style, which makes it awkward to socialize. (You may think staring into people’s splayed crotches constantly would be a bonus, but it gets old fast.)
After some discussion, I convinced him that adding a few lower tables and chairs would make the place more inviting. I doubt the owner’s motives were purely altruistic–a number of businesses in the area have been hit with ADA suits recently–but if one of his regulars hadn’t been a wheelchair user, he might not have even thought to ask until the lawyers showed up at the door.
That’s what it’s all about: changing the world, one beer at a time.