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It inflames the eyes, urinary tract, and the joints: The ones in my feet, especially, can suddenly swell in acute pain that can last for months, sometimes leaving stress fractures in the neighboring bones. For a few years, I took Humira, a medication that alleviated my symptoms, but my doctors took me off it when I developed uterine cancer. Although I beat the cancer, my arthritis came roaring back with a vengeance. After it struck my feet again — this was in the winter of 2012 — I spent much of the month indoors. Occasionally I limped to the corner to catch a cab to the grocery store, $7 each way, my feet erupting in pain as I dragged my bags from the store to the corner. By the end of the month, I concluded that the pain wasn’t going to let up anytime soon.
In 2009, after I was diagnosed with arthritis but before my medication started working, I visited my mother in two surgical boots, stress fractures in both feet. She rented a wheelchair for me. "We don’t have to go out," I told her peevishly, roiling with embarrassed resentment as she pushed me like a child in a stroller. Why not just let me limp around in peace, the way I did at home? I remember, too, how quickly the arthritic pain gripped my arms and shoulders when I tried to roll myself. I didn’t want another wheelchair, I decided. That’s when I began researching mobility scooters.
In the scooter, I’m at cigarette height, cup-of-coffee height, stitching-on-back-pockets height.
What is a mobility scooter? Existing in the gray area between a wheelchair and an electric tricycle, the mobility scooter is a battery-powered vehicle designed to help people who are, like me, partially disabled. When I consider mobility scooters in the abstract, they seem intended to help sedentary retirees get around the mall. I’m a forty-something, active New Yorker: Before I went off the arthritis drugs, a mile’s walk was a neighborhood stroll. When I thought about buying a mobility scooter, I felt embarrassed and humiliated, as if I’d failed at some basic element of personhood. But my shame wouldn’t do my walking for me.
I decided to rent a scooter before buying one. "We have a Buzzaround," offered the elderly salesman at Chelsea Mobility when I called around. "Do you want me to take your credit card number and put it on hold for you? Otherwise, I can’t promise how long it’ll be here," he drawled.
"That’s just a risk I’ll have to take," I bristled, resisting the hard sell. "If I get there and you still have it, great. If not, that’s my problem."
"A strong-minded woman," he noted, molasses-voiced. "I like that."
After yet another $7 cab ride, I met the Chelsea Mobility salesman, a tall glass of water in a bolo tie, no doubt a Casanova in his youth. "Are you the strong-minded woman I spoke with on the phone today?"
I bet you say that to all the limping ladies, I thought, grateful for a little cheesy flirtation. He walked me through the Buzzaround, which resembled a big padded chair grafted onto a skateboard. "Turtle and rabbit?" I asked, pointing to two drawings under one of the controls.
"Two speeds," he said. He showed me how to break the scooter down into Velcro-covered chunks — the smallest a 20-pound battery pack — that could peel apart to fit into a cab.
I signed the rental papers and drove the scooter up to the door, which the salesman held open for me. "How do I open doors when I’m in this thing?" I asked.
"Don’t worry, hon," he assured me. "People will hold doors open wherever you go."
As I drove the Buzzaround home, I was pleasantly surprised that, instead of limping behind my fellow pedestrians, I was passing them. Instead of anxiously waiting for a cab and then anxiously watching the meter, I was in control. After weeks stuck in my overheated apartment, I could feel the cold air whoosh against my face. I grinned, and gunned the motor. I could get a lot of groceries home in this thing, I thought.
Alas, the Buzzaround lost power a block from my house the night I drove it home, and again the next day when my partner Sharon and I tried to go to the movies. And when the manufacturer swapped my scooter for a model with a more powerful battery, it weighed 110 pounds to my 120. The first time I encountered a street corner without a wheelchair cutout, I found that the bike was too heavy to lift the four inches onto the curb; the small step was suddenly an insurmountable barrier. I found myself similarly stranded on the subway when I discovered that the train was a few inches higher than the platform. Even the scooter’s broken-down parts were almost too heavy to carry, leaving me at the mercy of benevolent strangers.
Learning about Lady Gaga’s post-surgery wheelchair made me feel a little less unglamorous.
So I upgraded to a device called the TravelScoot, which weighs 35 pounds and is able, according to the manufacturer, to hold a charge for 12 miles. Now I could travel independently. I could fold it up and lift it by myself into the trunk of a cab, and in a pinch, I could even drag it painfully up a flight of stairs. It had a basket and a canvas sling for groceries, and a cute bicycle bell.
But the TravelScoot had its problems, too. It was expensive, and insurance didn’t pay for it. It was useless in the snow, and dangerous to operate while holding an umbrella. Moreover, it was even lower-slung than the Buzzaround had been. I’m 5’9" standing up. In the scooter, I’m at cigarette height, cup-of-coffee height, stitching-on-back-pockets height. I can’t lean into the street to watch for oncoming traffic: I can’t even see it.
Regardless of the brand of mobility scooter or wheelchair, those of us who can’t walk face similar transit challenges. Most subway stations in New York City, for instance, don’t have elevators. One of my doctors is on the Upper East Side, in an office just steps from the 86th Street subway station. The nearest elevator is at either 51st or 125th Street, adding at least 35 blocks to my commute. The closest elevator stations to my home and job are so far away I have to budget an extra hour round-trip to work.
As for the ritual of seeing and being seen? Fuggedabout it. No one my age meets my eye when I’m in the scooter. Nobody asks where I got my dress. When they notice me at all, they get out of my way with guilty, elaborate politeness, as if to make it up to me that they can walk and I can’t. No wonder the Chelsea Mobility flirt makes money.
Dogs and children notice me. I am an adult at eye level, which makes me neither fish nor fowl. Dogs bark. Children stare, asking loudly, "Is that a bicycle? Is that a wheelchair?" (I like letting them try out the bell.) Seniors also notice me. Some of them give the scooter a curious look, perhaps thinking about buying one for themselves. The faces of others register horror, or perhaps schadenfreude: At least I’m not in one of those!
After hip surgery for an inflamed joint — is she a fellow sufferer? — Lady Gaga had a wheelchair made for herself by designer Ken Borochov. It’s a steampunk throne for a James Bond or a Russian mafia don: Made of black tufted leather with 24-karat gold-plated wheels, it sports a Laz-E-Boy-style footrest and a dainty, creepy, black leather canopy. Although the recent sight of Kylie Jenner posing in a wheelchair she does not need left me with a bad taste in my mouth, learning about Lady Gaga’s post-surgery wheelchair, infused with the same gothic whimsy she brings to her music videos, made me feel just a little less unglamorous in my mobility scooter.
My name is not Wheelchair. My scooter is not my identity.
A few weeks after her surgery, pictures of Gaga walking — in somewhat lower heels than before — began appearing here and there in the celebrity press. Of course, "Lady Gaga Walking" doesn’t make the same headlines as "Lady Gaga’s Wheelchair." The best the media could come up with were a couple of stories about how Gaga had gotten hooked on a British auto show called Top Gear during recovery.
Two months after getting the mobility scooter, I met a scholar named Christina Crosby who experienced a spinal cord injury in 2003 and is permanently in a wheelchair. We talked about becoming disabled as adults, and she said, "Eventually, you settle into it." That spring I thought of her every time I had to get up and drag my scooter up onto a curb, or into a subway car, or through a door. (Contrary to the assurances of the Chelsea Mobility salesman, it’s catch as catch can if I can get anyone to hold open a door.) What if I couldn’t walk at all, or stand? What if I were really in a wheelchair? I caught myself wondering that spring. I think I endure my scooter-bound hours by imagining that I’m not defined by them, that I’m just passing through.
I know this isn’t how I’m seen. When I went to a play recently, the usher hailed me as "Wheelchair," asking my partner, "Are you with Wheelchair?" When I offered a friend a turn on my scooter, she turned me down, joking that she didn’t want to appropriate my identity. My name is not Wheelchair. My scooter is not my identity. Yet I know that when I’m out in the world and I see someone in a chair, I, too, see the chair first, not the person. The idea that the person could leave the chair doesn’t cross my mind, though I now realize it should. As for everyone else on the street, walking enviably upright, according to the language of disability activism, they are the ones called "temporarily able-bodied." As indeed I was, for many years. I danced for hours at my 40th birthday party. I don’t know how long I’ll even be able to stand at my next one. Because the truth is, I don’t actually know whether I’m just passing through or if I’m in the chair to stay.
I’ve been in and out of the scooter since the end of 2012. I eat a monastically dull anti-inflammatory diet, which got me out of the scooter for a year and a half. I go to acupuncture once a week, and drink the foul herb teas my acupuncturist prescribes daily. I recently began taking a drug that has helped people with a variety of autoimmune diseases. The routine nature of these treatments makes reporting them as dull as Top Gear, but if they work, dull is fine by me.
One thing I see more clearly from waist-height is just how many people are limping out there. There’s a lot of joint pain parading down the sidewalk, even among those who seem to be doing well. When my mother pushed me in that wheelchair back in 2009, I felt so much helpless anger, so much outraged pride. This isn’t me, I thought. Can’t everyone see this isn’t me? But the truth is, you never know who you might see in a chair next. You never know when you might need one yourself.