WHEN THEY'RE STANDING AND YOU'RE NOT.
"Take a seat!" was not an invitation but an order issued to me by MS in 1993. Entering a room became a command performance, starring my motorized wheelchair: "Hi, I'm The Wheelchair. Ellen is with me." I could not tolerate the look and feel of my wheelchair and I was devastated by the loss of height. My previous standing height of 5 feet put me eye level with shoulders. Now, I get to see a lot of knees (not one of the more attractive parts of the human anatomy).
I had 2 choices: give up and fade into self-imposed oblivion or move on. I chose the latter. A wheelchair would not be a metaphor for my life. Rather, it would be a tool to enable me to enjoy life and participate in it.
It's been a long, bumpy ride, but I've learned how to communicate from a wheelchair and break down some of the barriers MS creates between us and the able-bodied. It's awkward for both sides. I've found it usually works best if I take the initiative. But I frequently have to remind myself to answer people's unasked questions.
"Did you know that I was in a wheelchair and that Butter was a canine companion before you came to my home for an interview?" I asked Lisa, my dog walker.
"No," she replied. "My high school adviser only told me that a woman needed someone to exercise her Golden Retriever. I was so relieved when you gave me a copy of your book, so I could find out what was wrong with you."
"You've been coming here for several weeks now. We talk every day. Why didn't you just ask me?"
"I didn't want to offend you."
MS offends me. Asking me about it does not. But Lisa's misperception is not uncommon. While riding through this able-bodied world, I have identified several categories of response to my wheelchair as well as strategies to mitigate its intrusive presence.
THE PEEPER RESPONSE: Able-bodied people often avoid eye contact or peep at me with pity and curiosity. In childhood, they were told that it's rude to stare or point at the unfortunate person in the wheelchair.
Solution: It helps to have a bridge, something that makes you (excuse the expression) accessible. My gorgeous canine companion, Butter, is my bridge. People see him first, not the wheelchair. They feel more comfortable about approaching me and I feel more comfortable about approaching them.
If you don't have a dog, I strongly recommend `sitting' in style. Accessorize your wheelchair; use fashionable fabrics to cover the cushions, arms, or back of your chair. Hang an unusual photograph or profound quotation on the back. There's no way to be invisible, so wear something colorful and eye-catching. Carrying an interesting book or a magazine article about a current topic of interest on your lap helps break the ice.
I've even found it useful to let the item fall from my lap. Hey, it works for me.
THE THIRD-PERSON RESPONSE: Able-bodied people will refer to you in the third person. In public places, the person standing next to me is often asked, "Where is the best place for her to sit?" or "What can I get for her?" or, my favorite, "Will she be comfortable here?"
Solution: Resist the urge to roll over their feet and say, "Oops, she's really sorry." Instead, try to make eye contact and answer the questions: "I'm very comfortable, thank you." Begin a conversation with the person accompanying you, so it's clear that you have an able mind. Ask the `third person' a personal question or give him or her a compliment. This requires someone to acknowledge your presence and respond directly to you.
THE IRRITABLE RESPONSE: I don't always feel welcome in crowds. When my presence blocks the flow of traffic in a public building, the occasionally irritated person at the front desk will say with a smug smile, "The bathroom is on the second floor," followed by, "the elevator is out of order."
Solution: This is not a time to scream "ADA." Wish them a good day and walk (oops) ride away in the other direction.
THE HEAD PAT RESPONSE: These kind people really want to help and genuinely feel sorry for me, but they are afraid of saying the wrong thing. So they compliment me instead. They say I'm a great inspiration, they wish me well, and, with affection, pat me on the head.
Solution: I ask them about their personal and professional lives. People love to talk about themselves. I find that humor often puts people at ease. I point out some advantages the chair gives me: I always have a seat; I don't have trouble finding a parking space at the airport; my shoes don't wear out; and I don't have to cook, wash dishes, or clean up when I make a mess.
I want to emphasize that it is my enormously supportive and loving able-bodied family and friends who have helped me walk on 4 wheels. They are saddened by my condition, but not deterred or distracted by it.
FROM WHERE I SIT
My task is communication. It's about being truthful and direct and getting rid of the small talk up-front. When able-bodied people seem uncomfortable, volunteer information. I explain that I'm in a wheelchair because of multiple sclerosis and they should feel free to ask me questions about my condition. I offer to race children and encourage them to examine my wheels.
MS is not my last name and it's not yours. Never let the small talk diminish you or stop you from leading a productive life. Keep moving on!
Ellen Burstein has MS and is quadriplegic. She is the co-author of Legwork: An Inspiring Journey through a Chronic Illness (Lisa Drew/Scribner, 1994). With the help of technology she remains productive, and frequently writes and speaks about not giving up. She and Butter live in a suburb of New York City.
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|Date:||Jan 1, 1999|
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