By Kelly Mack, as told to Hope Cristol
There aren’t a lot of people these days who end up in wheelchairs because of rheumatoid arthritis (RA). At age 45, I’m one of them -- but I’ve been in a wheelchair, except during physical therapy, for most of my life.
I was diagnosed with juvenile rheumatoid arthritis when I was 2 years old. That was in 1979, and there weren’t very good treatments for RA, not even methotrexate. (Editor’s note: The FDA approved methotrexate for RA in 1988, and the first biologic for RA a decade later.)
The disease did a lot of damage to my joints early on. By around age 10, I used a wheelchair whenever I had bad days or had to walk certain distances. As a teenager, I had my hips and knees replaced. So I’ve had a lot of experience with people asking what’s wrong with me or why I’m in a wheelchair.
I Want to Educate
I feel I’m on a personal quest to help people understand disability better. If they ask me questions, even if it comes out in the “wrong” way, I’ll usually talk about my health history to whatever extent they’re interested.
I also want to make space for people who are uncomfortable around disability. It’s hard to get over the stigma. Sometimes I explain that my wheelchair doesn’t keep me from regular life; it’s what lets me have one.
With my wheelchair, I can go out to dinner with friends. I can roll along to places I need or want to be. Without a wheelchair, I pretty much can’t. And after people hear that, a lot of times they’ll nod and say, “Yeah, that makes sense.”
I Also Have a Right to Privacy
I don’t feel I have to talk about my disability or my wheelchair to anyone who asks. There are some people who think if you have a serious disability, you must not be able to have a job or a family or loved ones. If someone like that asks me, “Why are you in the chair?” I won’t engage.
Sometimes I’m not even that polite, especially when people touch my wheelchair. I take public transit to work and people have grabbed on to my chair for stability. That doesn’t make me want to patiently educate.
One time I said, “Don’t touch my chair. It’s my personal property and that is assault.” Another time I was so exhausted after work that I could barely verbalize my thoughts. I just pointed to her and yelled, “No!”
I Speak Up for Myself – and Others
It’s been a personal mission for me to let people know: Yes, I want to be out and about. Yes, that means I will be in a wheelchair. You can welcome me in, or I can make space for myself. But I’m not giving up and staying in.
That’s not just true for my social life. About 5 years ago, when my husband and I moved to a different part of the city, around my corner there was a huge problem with the sidewalk. I was able to clear it with my wheelchair, but just barely.
I started a campaign to get it fixed, repeatedly emailing the city in order to convince them that they needed to repair it. It took me a year and a half, but it happened.
I’m aware of how privileged I am to be able to do that, to have internet and the energy to send these emails repeatedly. What motivated me wasn’t just that I wanted to improve my own quality of life. There are other people in my building with mobility aids. They may not know or feel comfortable with this kind of advocacy, and I want to help them, too.
A Bit of Advice
I know the stigma of disability exists everywhere, even within communities where disability is common. Sometimes when people ask me about RA, it’s because they need help or they’re afraid of a future with major mobility issues.
Here’s some of the advice I’ve given, often in online forums, including one that I help moderate.
- Consider the good part about wheelchairs or any other mobility aids: They make your life easier. You’ll have less pain and fatigue and more energy to do things you enjoy.
- Be straightforward about your RA at work. Accommodations can help you be more successful, not less.
- Call out the fear and shame you feel for what it is: stigma. We have stigmatized disabled people for so long that we’re afraid of being in that group. If we want to end the stigma, we need to stop having so much pride in what we can do physically. We need to embrace who we are and what we have to offer -- regardless of our body strength.
Photo Credit: Brian Brown / Getty Images
Kelly Mack, RA advocate, Washington, DC.
Arthritis Research and Therapy: “Methotrexate: who would have predicted its importance in rheumatoid arthritis?”
Clinical Therapy: “The Use of Biologics in Rheumatoid Arthritis: Current and Emerging Paradigms of Care.”