Disability Studies

When I came to work for the National Multiple Sclerosis Society, I thought I was pretty familiar with the world of disability. My mom was diagnosed with progressive MS when I was 8, so I’d grown up with the disease. We received services from the Society, and as an adult, I tried to give back when I could. This was one job, I thought, where I wouldn’t have much of a learning curve.

What I hadn’t counted on, though, was the extent to which progressive MS was my model for MS and for disability in general. And the truth was, I had only lived with one person who had MS and her disability had been very obvious — I hadn’t had so much experience with invisible disability.

My first lesson came early in my new job. I was reading a story in Momentum about a seemingly “normal” 28-year-old woman with MS who was barred from using the handicapped restroom at a bar. The bouncer was literally standing between her and the restroom, refusing to believe that she had a disability. “Wow, that’s a challenge we didn’t have in my family,” I thought. And then: “Have I ever made that mistake?” I’d never been a bouncer, but I’d worked in coffee shops and restaurants. It felt entirely possible that I had perhaps made assumptions about people’s disabilities without even realizing it.

The penny really dropped for me when I worked a Walk MS event. My coworker, Mike, was showing me how to sign participants in for the event. Taking a sheet of stickers, Mike said, “You write out the nametags and attach the lanyards for everyone because you don’t know who might have a problem with fine motor skills.”

Standing there with Mike, I felt myself stop to take that in. That was not at all my instinct. Wouldn’t people feel that I was condescending to them? What if they wanted to write their own name?

But I saw the wisdom of this rule as the day went on. I hurried to fix the lanyard for the man in the wheelchair. But I was a little slower with the fit-looking woman trailing three kids. I’ve always been a rule follower, and so I attached the lanyard to the badge for the woman. As she reached for it, I saw her hand tremble. Her movements were jerky as she pulled it over her head. It was clear she would have struggled with the fine motor work involved in the lanyard.

In that moment, I was so grateful to Mike and to the Society for that rule. Thank goodness I hadn’t made this nice woman ask me for help at an event that was supposed to be for her. With new eyes, I realized that the habit also kept the man in the wheelchair from feeling singled out — as he might have if I’d let the people before and after him do their own lanyards and then made a point of doing his.

It sounds like a little thing, but the little things matter a lot. They change the way we feel about an event or a day. Taken together, they help define the communities we live in.

As I took the subway home, I regarded my fellow travelers with renewed empathy. Any one of them could be struggling with some disability. And all of us were surely struggling with something, whether it was physical, intellectual or emotional. And if we didn’t happen to have a challenge on that particular day, odds were good we would have one at some point in our lives.

I’d been on my feet since 7 a.m., but, for once, I didn’t rush to grab a seat. Surely someone else on the train needed the seat more than I did. I could stay standing this ride.  It suddenly seemed — and it was — the very least I could do.