HECK ON WHEELS
How I Learned to Roll With the Punches
By Loolwa Khazzoom
Sunday, August 1, 2004; Page B03
I was brooding under the covers, talking to my mother on the phone. "I should just cancel my book tour," I told her, frustrated to the point of tears. "I can barely get to the bathroom. How can I possibly get across the country?"
My knee had been badly injured two weeks earlier, and hobbling to the kitchen had become about as much adventure as I could stand. Now, however, my collection of essays about Jewish women had been published, and I was scheduled to go on tour. Local travel was clearly doable, with friends schlepping me back and forth to bookstores and synagogues, but the whole Los Angeles/Seattle/New York/Boston thing seemed out of the question.
"Why don't you rent a wheelchair?" suggested my mother, always the problem solver. Living in Berkeley, Calif., where organizations for the disabled are as common as coffee bars, I was used to seeing all kinds of people roll by -- paraplegics, amputees, people with cerebral palsy, whatever -- yet somehow, until she said it, I hadn't considered it an option for myself.
But it was an appealing idea, especially because I've suffered from an "invisible disability" -- spinal disc degeneration -- for almost a decade, and I've have spent a considerable amount of time worrying about how my condition could deteriorate as I grow older. I was open to exploring the kind of active lifestyle that transcends physical limitations.
Surfing the Net, my mother found a store that rented wheelchairs and brought one over for a test run. The act of easing myself into it and maneuvering my way down the block -- excuse me, down a third of the block -- burst the bubble of my active-lifestyle fantasy. Though it was supposedly the lightest in the store, the wheelchair was heavy and hard to maneuver. Rolling its wheels caused terrible pain in my wrist and shoulders.
"This tour is going to suck!" I said, scowling. "It may be extraordinary!" my mother said, ever optimistic. With little option besides giving up, I decided to approach my wheelchair stint as a sort of adventure -- a two-month visit to the world that 1.5 million American wheelchair users live in every day, and which I might someday need to inhabit myself. What I found there was not quite what I'd expected -- for better and for worse.
To begin with, my book tour was nothing like the one I'd done a few years earlier. Traveling to three cities on my own two legs, I'd taken the opportunity to get in some sightseeing, window shopping, cultural engagements and visits to old friends. This time, leaving my hotel room at all rarely seemed worth the effort. Every outing took advance planning: calling ahead about disability access, leaving extra time for loading and unloading the chair, strategizing one-stop shopping expeditions. Every move was a struggle: barely squeezing through a narrow doorway, searching for wheelchair access to a public area, praying for the light to stay green long enough for me to get across a busy street. I could get exhausted from something as simple as purchasing a bottle of juice -- and that was when I had someone helping me.
In Los Angeles, my first stop, I needed to make copies of promotional bookmarks I planned to give away on the tour. At Kinko's, I peered like a child over the counter to talk to an attendant who printed the bookmarks five to a page, which reduced the price by about two-thirds. Then I rolled off in search of a paper cutter, and soon found they were all mounted at a standing person's height. I returned to the attendant's desk to ask for one at my level. He said there were none. I suggested the store offer me complimentary cutting service, since the self-service option was not wheelchair-accessible. He said sorry, ma'am.
It wasn't just that I had become short again; there were other ways that being wheelchair-bound was like returning to a child-like state. Normally self-sufficient, I found it very hard to be suddenly dependent on strangers. Oddly, people seemed to find it just as hard to offer assistance.
Take the man in Seattle who stood idly watching as my wheelchair got stuck in the middle of a busy intersection. Drivers waited impatiently as I struggled with a faulty mechanism. Because I was on a hill, oncoming traffic could not see me until the last minute. Seconds ticked by; the light changed. Finally, desperate, I called out. The man instantly came to my aid, getting me out of harm's way, and then going so far as to wheel me all the way to the restaurant where I was headed. "I would have offered to help before you asked," he said sheepishly, "but I was afraid you would get upset. I didn't want to offend you." Note to the able-bodied: Most people would rather be offended than dead.
It was hard to be at the mercy of the common sense and goodwill of others -- qualities that were not always forthcoming. When I asked a New York cab driver to put my wheelchair in the trunk, he cursed me in language that would put a sailor to shame. (Wasn't he supposed to be angling for a tip?) A Seattle hotel clerk who grudgingly agreed to help me to my room rolled me smack into a door. An airport curbside check-in agent who was "too busy" to call for the wheelchair I had ordered suggested that if it hurt too much to stand I should walk into the concourse to find a seat.
On one flight, I became increasingly strident when a husband and wife bustled around me in my aisle seat, passing their bags and climbing back and forth over my extremely sensitive -- and visibly braced -- leg. The slightest bump would have sent a shock of pain through my knee. "Why don't you just wait in the aisle a moment," I proposed. "I have a knee injury, so if you'll let me, I'll just get myself out of the way."
"You're fine," the man replied. "You don't have to move."
"I have a knee injury," I repeated, "so I'd like to just get up."
The man continued bustling, reaching above me to the overhead bin, assuring me I had nothing to worry about, that he would be careful. "I need you to move," I finally ordered. "I'm getting up."
Did I sound cranky? Yes. But after takeoff, when the man climbed over me toward the aisle, I stayed silent, figuring I had already made enough of a fuss -- and sure enough, he banged right into my foot. The reverberation of pain that shot to my knee reminded me to always, always err on the side of being annoying.
I also had happier encounters on my brief visit to the land of the wheelchair-bound. Some people went far out of their way to help, like the Los Angeles woman who not only maneuvered me into an elevator but rode up to my floor with me, just to help me get out. And she, like many others, opened up in response to my obvious vulnerability, sharing stories of her own injury and recovery. A wheelchair isn't a bad way to start a conversation.
Still, getting around in one was overwhelming, so every time I felt strong enough to hobble around, I did. I then found myself back in the world of invisible disabilities: "I have a knee injury, so I need an elevator," I informed the clerk at the YMCA in midtown Manhattan. I had come in for some physical therapy and discovered that the gym was one floor below. "Go down this flight of stairs," she said, motioning to the staircase at my right. "It's at the bottom." I had to remind her three times why I needed the elevator in the first place.
My sojourn in the wheelchair taught me more lessons than the one about being annoying when necessary -- lessons in courtesy, humility and empathy. By the time I ended the book tour, my knee was still too painful to walk around on, but I could drive my car again and even cruise for short distances on my bike. I was delighted to be able to get to a follow-up doctor's appointment on a different set of wheels. As I exited the building, cycling helmet in hand, I noticed an attendant pushing an elderly man in a wheelchair. The attendant pressed a handicapped button near the exit and one of the double doors opened.
I walked over and held open the other door, giving the chair the extra room that made it easy to pass. The man in the wheelchair looked up at me, surprised. "Thank you so much!" he beamed. "Most people don't realize how hard it is."
Loolwa Khazzoom is the editor of "The Flying Camel: Essays on Identity by Women of North African and Middle Eastern Jewish Heritage" (Seal Press).
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