I’m Using My Status to Speak Up

I’ve been thinking a lot about privilege in recent months — what it enables as well as what it prevents. Those who benefit from it may not be aware of their position, and when their privilege is pointed out, they have a hard truth to face. Many refuse to accept their advantage; they deny it or decry the person who points it out. Others begin to examine their situation more closely and use it to the advantage of others. Privilege isn’t only a “white thing” or a “male thing,” though these two groups do benefit from many advantages in our culture. Privileges come with socioeconomic status, religious affiliation, sexuality, education level, and physical and mental ability.

As a white, straight, happily married, Christian woman who has a master’s degree and comes from a two-parent home, I enjoy many advantages. It wasn’t until I learned I had multiple sclerosis in 2004 that I slipped out of one of the privileged categories, from “able” to “disabled.” (Yes, I know the term isn’t ideal, but that’s the way most Americans view the dichotomy, so let’s go with it.)

Being an MS patient means perhaps not walking or talking like “normal” people. It involves fatigue or troubles with coordination. The brain becomes sluggish from time to time. One “runs out of gas” before most people their age would. Medications are injected, something others never have to think about. Spontaneity is often impossible because planning ahead and practicing a kind of self-care is necessary, which “able” people would find exhausting.

Many people are understanding and try to help. They encourage and support us on the bad days as well as the good. However, others don’t understand what it means to live with a chronic, incurable (for now) disease. These folks are the ones who criticize us for where we park or for asking for assistance in public spaces. They’re the ones who don’t want us to speak up or advocate for ourselves.

I think there are two reasons for this. First, we don’t “look sick,” and why should people who don’t look miserable get special accommodations? The second is more elusive. I firmly believe our illness freaks out “able” people. There’s no genetic cause for MS like there are for other illnesses. We didn’t do it to ourselves through poor life choices. Multiple sclerosis just happened. And having us around is a reminder that it, or something similar, might land in their laps one day. I would never condone such behavior, but I can understand why they might want to push us away with both hands.

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In her wonderful book, “The View from Flyover Country,” Sarah Kendzior closes with an essay entitled: “In Defense of Complaining.” In it, she writes that when things got hard, Americans were told: “Stop complaining — things will not be like this forever. Stop complaining — this is the way things have always been. Complainers suffer the cruel imperatives of optimism: lighten up, suck it up, chin up, buck up. In other words: shut up. The surest way to keep a problem from being solved is to deny that problem exists. Telling people not to complain is a way of keeping social issues from being addressed. It trivializes the grievances of the vulnerable, making the burdened feel like burdens. Telling people not to complain is an act of power, a way of asserting that one’s position is more important than another one’s pain. People who say ‘stop complaining’ always have the right to stop listening. But those who complain have often been denied the right to speak.”

She’s 100 percent correct. Being allowed to speak (or keep others from doing so) is an act of privilege. It controls our national dialogue about everything from ableism to xenophobia, but I refuse to allow myself to feel “like a burden.” I am here in the body I’ve been given, and I do not simply take up space designed for someone who is “better” than I am. My body is not an inconvenience or an embarrassment. I am no less worthy of love, kindness, or joy because I am an MS patient. And neither are you.

So don’t be afraid to advocate for yourself. Use your voice for good, and never ever feel like your concerns are trivial. But also, allow your status to shape the way you see people who are different from you. Let your illness inform the way you see the world and change it for the better. Many other groups are subjected to the same muzzling as the MS community, and as people who know what it’s like to be on the outside, it’s our job to stand up — both for ourselves and others.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.