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Name: Robin Mayhall
Email: robin@hieran.com
Date: 13 Dec 1999
Time: 04:12:29
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I’ve always been the epitome of average when it came to my health. I had the usual childhood disease: wintertime coughs and colds, a broken arm as a kid – but never anything serious. Before my senior year in college I had never even experienced surgery or a hospital stay. I was healthy; I rarely went to doctors. I especially prided myself on my strong hands, conditioned by piano playing and typing and capable of carrying twice my weight in dirty laundry.
Then, at age 20, I got arthritis and learned what it is like to be unable. Unable to write with a pencil, unable to open a Coke can, unable to drive my standard transmission car. Before, I could do anything and go anywhere. I was never athletic, but I enjoyed swimming, horseback riding, and leisure sports like croquet.
Now I struggle just to walk. I have become accustomed to needles wielded by well-meaning doctors. I answer questions of astonished friends and relatives with a brave smile. I laugh when a friend hums "The Wedding March" while I take staircases one slow step at a time.
I am determined not to let my disease stand in the way of my life. So when the time came to take a long-planned, five-day trip to Disney World with three close friends, I went wholeheartedly, arthritis or no arthritis.
On the morning of departure, my friend Patrick carried my suitcase for me. I sat in the front seat, where I could stretch my stiff legs for the duration of the 12-hour drive; I was put in charge of map reading so I could contribute to the logistics of the trip.
We decided to rent a wheelchair from the theme park to transport me through Disney World. No problem. Yet I was a little surprised that first morning when the bus from our hotel dropped us off in a parking lot easily one-quarter mile from the entrance to Disney-Metro-Goldwyn-Mayer (MGM) Studios. OK. I would have to walk at least as far as the wheelchair rental counter. Walk I could, so I did.
The wheelchair was great. My friends took turns pushing me. I carried their cameras and purses and navigated with the Disney maps. A handbook for disabled guests gave me clear, detailed information about how to enter the various shows, rides, and restaurants.
MGM, a relatively new theme park, is chock full of ramps, rails, and wheelchair-accessible attractions. We found it fun to be ushered past lines of people and given the best seats in any attraction.
The first problem we encountered was so minor I hardly noticed it initially: A plastic guard covering electrical wires that stretched across a walkway temporarily halted our wheeled progress. Patrick, who was pushing me, decided to take the bump as fast as possible. The result was predictable: My footrests slammed into the obstruction, jolting my swollen knees and nearly spilling me onto the concrete. We learned quickly: Back over bumps. But this was just the first of many lessons we would learn in the course of our vacation.
After a day or two, I began to notice people’s reactions to my apparent infirmity. Disney hosts and guides seemed to single me out for flirtation, talking specifically to me and asking personal questions that I would have found intrusive in other circumstances.
Little children stared at me with innocent curiosity. Fellow wheelchair passengers gave me secret smiles. But the majority of people I saw – healthy adults – gave me a universal look: glance at my face; glance down at my body and legs; glance back at my face as if to ask, "What the hell’s wrong with you?" By the third day my friend Rachel remarked, "Maybe you should wear a sign that says ‘ARTHRITIS!’"
In crowds people casually cut me off, ignorant of the unwieldy nature of a wheelchair. In attractions they blocked my view or allowed their children to jostle me. Once, while watching the laser show in the EPCOT Center, I was besieged by two children who literally climbed over my legs to get a better look, wrenching my knees painfully in the process.
Even my friends were unused to the complications of being wheelchair bound; they didn’t realize how frightening it was for me when they joked at the tops of hills, "Let her go!"
When they sat on benches to eat, they would roll my chair to a nearby railing and face me inward, overlooking a lake or tree or grass plot, my back to passers-by. Also, it was impossible for me to order food or drinks; the counters of food stands or restaurants were far too high for attendants to see me.
At the end of the week we visited the older Magic Kingdom, which is far less accessible than the newer parks. I was constantly in and out of the chair, wondering how people who can’t walk at all cope with the limitations. All around me I saw the answer. They sat and waited alone while family and friends rode the attractions.
In the Magic Kingdom one morning I was "kidnapped" by an actor dressed as Little John from the animated Disney version of Robin Hood. He playfully wheeled me away from my friends until I was "rescued" by Minnie Mouse and Winnie the Pooh. They crowded around, hugging me, while people I didn’t know snapped pictures of the girl in the wheelchair. I thought uncomfortably, "Do they think there’s something wrong with me?" It was truly disturbing to realize, of course, there is.
My worst experience happened at an EPCOT Center attraction. I had to decide whether to leave my wheelchair and ride with a little pain or stay in the chair and aggravate the hosts who would have to accommodate me. Selina and Rachel, pushing together, struggled to push me up a long slope. We were greeted at the door by a hostess who cheerfully asked them, "Can she walk at all?" as though the wheelchair had rendered me mute.
I smiled and answered for myself, but the direction of the question devastated me. What was happening to me? Such a short time ago I was so average, so able.
I am relatively healthy except for a painful inflammation of the joints. But far too many people are not. Some cannot rise from a wheelchair long enough to board a ride. They may not have friends willing to push a chair all day, buy food, help them dress, pack, or carry a suitcase. Some cannot speak clearly to a cheerful Disney hostess.
I am lucky. With the help of medication I can walk. I am learning to live with arthritis and to control it. But now I know how relative the word lucky is.
And while I had a wonderful time in Disney World, I will never forget the people who stared sharply at me or casually blocked my view, ignorant of their own insensitivity. And I will never forget the people sitting alone in their wheelchairs, waiting. Because at the end of the day I could stand up and walk away, though slowly and stiffly. Too many people cannot.
Copyright © (1999) (Robin Mayhall). All rights reserved.
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