Life does not end when you have mobility problems, but it would be a lot easier if the stigma and barriers were removed
August 3, 2003
Boston Globe Magazine
Encounter with Lisa I. Iezzoni
You're a Harvard Medical School professor who's had multiple sclerosis for 26 years. And you say your new book, When Walking Fails, grew out of your experiences in airports. How so?
People would come up to me after seeing me on my battery-powered scooter, and they'd say, "My mother loves to go shopping, but she just can't walk anymore, so she sits in her house all the time. Do you think if I got her one of those, she would like it?" I was delighted to have people talk to me about their lives. But then I started thinking, Why are they asking me these questions? Don't they have doctors?
You learned you had MS as a medical student. What was that like?
Surreal. I believe that a student now would not have the experiences that I had at Harvard Medical School. It's really weird being at a place where you went to school and had all these things happen to you. And then, 20 years later, run into somebody who said something unbelievable to you when you were a student and have them treat you like a Harvard professor because that's what I now am.
What slights stand out most?
An attending surgeon said that I had no right to be going into medicine, because I couldn't be accessible around the clock. You know, when an attending surgeon says that in front of the other residents, the residents just don't treat you well.
How did you decide to use a scooter?
I was traveling to Washington for work about eight times a year. I had been using two canes to get around. As soon as I got my scooter, my world just opened up, because I was no longer terrified of falling.
What should doctors ask patients?
"Who does your grocery shopping?" And if the answer is someone else, they should ask, "Why?" It's often hard to ask people if they have trouble walking, because they tend to shy away from admitting it.
What surprised you in your research?
Women who are wheelchair users or can't walk three city blocks are 40 percent less likely to get Pap smears. They're 30 percent less likely to get mammograms. People with disabilities are not getting the kind of care that other people get.
Your health insurer refused to reimburse you for your scooter?
My insurer said it was a recreational vehicle analogous to a golf cart. That was my first clue that there are some weird policy issues out there.
Why do some people find this to be such a tough issue?
For most people, not being able to walk is so terrifying that they don't
want to talk about it. Two years ago, I had gone to a movie with a friend,
and on the way back I asked if I could take her arm. She seemed uncomfortable,
so I asked her why. And she said, "Well, I wouldn't want to live like you."
I was floored, but my response was "Until it happens to you, you just don't
know." Because, in fact, it's not the worst thing in the world.
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