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Diagnosis: MS: Wheel Talk

Reprinted from PN February 2002
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"Take a seat" was not an invitation but an order issued to me by multiple sclerosis (MS) in 1993. Entering a room became a "command performance," starring my wheelchair. I looked at able-bodied people, and they looked at my chair with curiosity and at me with sorrow.

I, too, felt sorrow, especially about the abrupt loss of height. My previous standing height of five feet put me at eye level with shoulders. Now, I see a lot of knees (not one of the more attractive parts of the human anatomy).

I had two 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 was to be a tool that enables me to enjoy and participate in it.

It's been a long, sometimes treacherous ride, but an incredibly interesting one. I've learned how to communicate from a wheelchair and break down some of the barriers it creates between people with disabilities and those who are able-bodied.

While riding through this able-bodied world, I identified several different categories of responses to my wheelchair as well as strategies to mitigate its intrusive presence.

THE PEEPER RESPONSE. Able-bodied people often avoid eye contact. During childhood they were told it's rude to stare or point at the unfortunate person in the wheelchair.

Solution: In this case, it helps to have a bridge—something that makes you (excuse the expression) accessible. Butter, my gorgeous canine companion, 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.

But not everyone is fortunate enough to have a "Butter Bridge," so you may have to create one. I strongly recommend "sitting" in style. Wear something colorful and eye-catching. Accessorize an institutional-model wheelchair, covering the cushions, seat, arms, and back with contemporary fashionable fabrics. On your lap, carry a large, interesting book or a magazine article about a current topic of public interest. Hang an unusual photograph, profound quotation, or personal thought on the back of your chair. My two favorites: "Able minds and able hearts do not require able bodies" and "I used to be much taller."

THE THIRD-PERSON RESPONSE. Able-bodied people often refer to you in the third person. In public facilities, the person who accompanies me is often asked, "Where is the best place for her to sit?" "Will she be able to get the wheelchair through 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.e., "I'm very comfortable, thank you."

Begin a conversation with the person accompanying you, so it's clear you have an able mind. Ask the "third person" a personal question or give him or her a compliment. This requires him or her to acknowledge your presence and respond directly to you.

THE IRRITABLE RESPONSE. No one has ever treated me with malice or disdain, but 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!" Apologize for bothering him or her, wish the person a good day, and quickly walk (oops) ride away in the other direction.

THE HEAD-PAT RESPONSE. These kind people really want to help and genuinely feel sorry, but they're afraid of saying the wrong thing. So they compliment you, say you are a great inspiration, wish you well, and with affection, pat you on the head and make you feel like a pet.

Solution: 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, and my shoes don't wear out.

My task is communication. It's about being truthful and direct, getting rid of the small talk up front. When able-bodied people seem uncomfortable, volunteer information.

I explain I'm in a wheelchair because of MS and they should feel free to ask questions about my condition. I offer to race children and encourage them to examine my wheels.

Finally, MS is not my last name—and it's not yours. Never let the small talk diminish you or stop you from living a productive life.

To quote Eleanor Roosevelt, "Remember, no one can make you feel inferior without your consent."

Ellen Burstein has MS and is quadriplegic. She co-authored Legwork: An Inspiring Journey Through a Chronic Illness (Lisa Drew/Scribner, 1994), available from iuniverse.com or amazon.com. With the help of technology, she remains productive and frequently writes and speaks about not giving up. She and her golden retriever, Butter, live in New York City.

The above information was provided by the National Multiple Sclerosis Society, 733 Third Avenue, New York, NY 10017-3288. (800) FIGHT MS / (212) 986-3240? / nat@nmss.org / www.nmss.org.

 

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Diagnosis: MS: Wheel Talk

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