It’s telling that the worst moment of my nine weeks using a wheelchair – I had a pair of broken heels – was not the time a drug-addled lunatic chewed on my feet for several seconds on a busy street in Toronto. No, the foot-biter doesn’t even crack the top five. But that dental assault is as good a place as any to start telling the story of my brief time with a disability – what I learned about the specific hardships faced by people with disabilities and how difficult it may be to ease them.
(“Brief” is the operative word here. My heels broke when I jumped out of a second-story window in Washington, D.C. I was locked in a bathroom and had to get to work. It made sense at the time. As a result, for just over two months, I lived a kind of pantomime of life with a disability – inhabiting it for a time, going through its motions, but knowing my experience was temporary, imitative. This short memoir should be read in that light.)
It was June and the air was sweaty at about 1:30 in the morning when things started slipping off the rails. Five or six of my friends and I were waiting in line to see the Handsome Furs on Toronto’s busy Dundas Street. My ever-present anxiety about being in the wheelchair was heightened because my feet were bare. It is an uncomfortable, vulnerable feeling to be barefoot in public. To the quartet of people standing in front of me, I said something to the effect of “Please watch out – I’m in a wheelchair.” One of them, a man who appeared to be in his mid-twenties, replied “Hey, I bet you haven’t seen this before.”
I hadn’t. He swiftly dropped to his knees and began biting my feet. His mouth was wet with saliva. I felt his teeth kneading my skin. It lasted for about five seconds.
When he stood up, he grinned and said, “I absorb energy through my face.” I was too shocked to reply. The biter casually turned around and continued chatting with his friends. Mygroup discussed, in a kind of halting, disbelieving murmur, what to do next.
After maybe a minute, I snapped. “What the fuck is the matter with you?” I yelled at my assailant. I was letting a reservoir of bitterness at my nearly two-month disability pour out through a valve of profanity. It felt really good.
Next, my friend Tim stuck a piece of gum he had been chewing on the jerk’s shoulder, and punched him in the face. A scuffle ensued, and our group dispersed. The show was sold out anyway.
Still, I could feel the ghost of the man’s teeth gnawing on my bare feet. This gave me occasion to think about why my feet were bare in the first place. And my exultation at the bizarre, cathartic scene outside the concert withered. I remembered how I had abandoned my socks in an alley on our way to the show. And how the socks were no longer good to me because I had been urinating in the alley, pants around my ankles, sitting in the wheelchair, and some of that urine had rebounded off the pavement and sprayed my socks. And how I had thought, screw it, and peeled them off then and there.
Uncomfortable things like that happened with unerring regularity to me while I was using a wheelchair. But, for me, the real struggle of performing bodily functions wasn’t physical. It was emotional. Without the use of my legs, people treated me like the healthy middle part of my life had collapsed, and the bookends of infancy and old age had moved into the void.
Bare acquaintances often remarked that I must feel like a baby, or like an old man. A neighbour with young children – whom she pushes around in little strollers – said to my mother one day, “Welcome back to our world.” I was sitting about three feet away.
There’s also the inverse feeling of turning into your grandparents. The only person in a wheelchair I’ve ever known closely was my late grandfather, Warren. He had Parkinson’s disease. So, for me, just being pushed in a wheelchair evoked brittle bones, varicose veins, blankets across the lap. Admittedly, that shouldn’t have been the only image that popped into my mind when I thought of people with disabilities – it just was. During one walk in Washington, my father, who was pushing me, said “We make quite a pair don’t we.” I asked, sourly and redundantly, what he meant. “Well, it’s supposed to be the other way around,” he replied.
Going for “walks” became taxing. Almost all sidewalks are slightly tilted to one side. I had to wheel intensely with one arm, and use the other arm to exert some drag on the opposite wheel, to move in a straight line and avoid gliding into traffic. Nine weeks of this left my shoulders stinging with the effort.
Other unexpected discomforts asserted themselves. I had no idea, for one, that the friction of wheeling yourself could build up so much static electricity. Often, after a few minutes of wheeling, I would zap my friends with an electrical shock when they touched me or my chair. In the D.C. subway, the elevator buttons are metal. I soon came to push them with my knuckle, to avoid a very visible bluish bolt of electricity jumping between my fingertip and the “up” button.
(The D.C. subway, to its huge credit, has elevators at every stop. In Toronto, where I spent my last seven weeks in the wheelchair, fewer than one in three stations are wheelchair accessible.)
Still, I would sooner be lightly electrocuted than use the elevator at Yeuh Tung, a Chinese restaurant in Toronto, again. The dining area is on the second floor in this restaurant. It is unusual for restaurants to be rigged with wheelchair-accessible machinery like elevators, and I entered in a charitable frame of mind. But when my lunch companion and I entered the elevator, and found it to be an unlit, smelly, four by four feet box with a corrugated steel floor, I began to have my doubts about the place. We found a tiny light switch after half a minute sitting perplexed in the dark, but that only revealed the true horror of the elevator. With the lights on, I pressed a button that said “2” and found it to be covered in a sticky brown goo, which probably got its start in life as a delicious oyster sauce on a plate of rice in the kitchen upstairs, but whose presence on the “2” button, and then my index finger, was a long way from its finest hour.
Those are the public hardships. But at least you can say that they happen with your clothes on. My first shower at home in Toronto is a good example of a new kind of domestic experience. I waited downstairs while my father put a white plastic medical bench, complete with a generous ass-groove, into the bathtub upstairs. He then piggy-backed me up our narrow staircase, my 150 pounds forcing him to stoop like a medieval serf carrying a big bundle of wheat.
In the bathroom, he deposited me on the bench, then brought me two blue garbage bags and a couple of bungee cords to keep my casts dry. When I had shimmied out of my clothes I sat there, naked except for the blue garbage bags covering my casts, the bungee cords tied so that the bags frilled at the top like 18th century culottes. I used the removable shower head to get clean, which was admittedly an improvement on the wet sponges I’d squeezed to rinse myself in Washington.
When my casts came off, about six weeks after I had broken my heels and three weeks before I was able to walk again, I had the added discomfort of having to stare at my newly shrunken calves as I sat on the shower bench. As any astronaut will tell you, if you don’t use your leg muscles for any real length of time, they atrophy. The doctors in Washington said I would start to notice muscle loss within three days of being off my feet. When I saw my legs beneath the knee for the first time in a month and a half, I nearly wept with the shock of it. My calves looked like ziploc bags full of water, dangling loosely from my shins. My skin was bad, too, covered in white and pink rosettes of irritated skin.
With or without casts, relieving myself while using a wheelchair required a cross between gymnastics, interpretive dance, and gandhian self-abnegation.
My first shit was in a hotel room in Washington. The bathroom was a little cramped, but had all the stainless-steel bars and ledges and handles that indicate wheelchair accessibility. I rolled myself backwards so my chair was lined up with the white toilet bowl. Then I impersonated an Olympic gymnast during a parallel bar routine, gripping one of the armrests and one of the steel bars fastened to the wall, and hoisting myself up, then sideways, before dropping myself on the toilet seat.
The next trick was to get my pants off. At this point, each of my feet were wrapped in about five pounds of gauze and plaster, and my bones were still extremely broken. There was no question of planting my feet on the floor for leverage. So I shimmied. I wriggled. I lifted one ass cheek at a time, sliding my pant legs down by degrees of two or three centimetres. I developed a kind of rocking motion, in which my hips heaved side to side like the bilge of a ship on a choppy sea until my pants were around my ankles.
The point of describing these things in such graphic detail is not to shock, but to emphasize the private nature of some of the largest challenges of my life with a disability. Getting zapped by static electricity in the subway was annoying, but having my father carry me on his back so I could laboriously undress before relieving myself – that hurt my dignity.
For people who use wheelchairs, many of the most intimate parts of life are made more difficult. No matter how many government subsidies you receive to install a ramp in front of your house, or to hire a nurse to help you clean up, it is still physically harder to get out of bed in the morning. It’s more complicated to shower. It is often much more awkward to have sex. These are parts of life with a disability that government programs and social acceptance do not reach.
Another difficulty in addressing disability rights is precisely the challenge of defining the term. A paraplegic man in a wheelchair, an eighty-year-old woman who uses a walker, and a spry twenty-something athlete with a prosthetic leg are all people with disabilities. But what do they really have in common? The kinds of accommodation they require from society are very different.
In July, I came out of a movie theatre after watching X-Men: First Class, a film about a group of people whose physical difference unites them. As I wheeled myself along the sidewalk, I made eye contact with a middle-aged man in a motorized wheelchair, whom it seemed clear would never walk again. Though we nodded sympathetically at each other, I felt like a fraud – I had perhaps two weeks left in the chair, he had the rest of his life.
And yet the complicated nature of these problems is no reason for apathy. Much about modern infrastructure and attitudes needs redress. There can’t be more than one in four shops or restaurants in a conventional commercial area of a big city that are wheelchair-accessible, particularly in Canada. (The Americans with Disabilities Act, signed by the first President Bush and amended by the second, mandated increased accommodation for people with disabilities in public transport, commercial facilities, and workplaces.)
It’s fair to make some allowances. How many little coffee shops would be shuttered if their bathrooms had to be outfitted to ADA standards? But there’s something ugly and arbitrary about denying a person access to a certain building because of the shape their body assumes.
Why is it fair, for instance, for a Baskin Robbins to have bathrooms that do not admit people in wheelchairs, but abominable and illegal to prevent a black man from using the same bathroom? Does the thousand dollars or so it would cost the chain to retrofit their facilities excuse them for telling a blameless person to take a piss elsewhere?
Though it doesn’t excuse them, it’s unavoidable that businesses like Baskin Robbins should incur a cost in making the world more accommodating for people with disabilities. But exactly because accommodating people with disabilities is a real and permanent financial toll, their rights are a perfect testing ground for our society’s liberal principles. One of the foremost liberal convictions is that societies should be organized from the perspective of their least fortunate members. The philosopher John Rawls defines a just society as one into which you would throw yourself without knowing whether you would be a monied aristocrat, a drug addict, or, for that matter, someone using a wheelchair.
Having spent nine weeks using a wheelchair, I no longer need to imagine making Rawls’ gamble to think of ways in which society could be made more just for the disability community. Vastly better public transit; infrastructure like roads and sidewalks built with the disability community in mind; and laws regulating the accessibility of private businesses are a start.
It would, in the end, be a small reprieve from what I found to be a difficult life. But hard problems are no excuse for inaction. There is much the government can do to help people with disabilities. And the extent to which governments and societies do act will be a test of their commitment to some of the least privileged among them.