I’m Using My Status to Speak Up

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.

16 comments

  1. It’s hard for me to go to my brain doc any more once he looks at me and says “You don’t have MS or Epilepsy. You need to get ALL these tests again.” Money out of pocket and stress to go with it. When you have had them tests over and over showing the same results.” How can I rely on him if he treats me like I don’t have nothing. Just cause I’m not showing it like everyone else in his office?

    • Jamie Hughes says:

      Samantha, I know what you mean. MS can be very hard to diagnose. Have you considered looking into a specialist? Here in Atlanta, we have two clinics filled with amazing doctors who do nothing but multiple sclerosis. They are called The Shepard Center and the Multiple Sclerosis Center of Atlanta. I go to the latter, and it is AMAZING! Something as strange and complicated as MS takes a person who is well-steeped in the literature and theory.

  2. K.A.van Akelijen says:

    Het onbegrijpelijke van het ziek zijn met ms is toch dat mensen liever hebben dat je ziek bent met een begrijpelijke ziekte,als je probeerd zo min mogelijk ziek en min mogelijk last te hebben,klagen,over het ms hebben ben je plots niet meer ziek en valt het wel mee.
    He luister nu even moet ik gaan vloeken en tieren als het niet lukt ik heb t dus tis niet anders!
    Ik ben en blijf dezelfde , heb ms zowat!
    T

    • Jamie Hughes says:

      Hey there, from what I gathered through the magic powers of Google translate, you’re saying that people always seem to want you to play down your disease and act like it isn’t that bad. I have experienced that as well, and it can be SO FRUSTRATING. I hear you! But you can’t let the haters keep you down. 🙂

  3. Cyndi says:

    Jamie,
    Thanks for your article…it could not be more timely. Just this morning, while at a local coffee shop, my husband and I were discussing the public place barrier limitations to disabled persons. Barriers not addressed by the current accessibility requirements under Title III/ADA public accommodation/commercial facilities. Barriers that exist not just for persons with MS but for all persons with any manner of disability or mobility limitation — whether it be a chronic medical issue or our aging society. I commend the ADA for the advances in removing many structural barriers…but, ‘cmon, that was 28 years ago now. The baby steps were great but it’s time to walk. What was acceptable for access 28 years ago is no longer enough in today’s world of persons with disabilities possessing/desiring far greater independence. In short, I don’t just want to GET to the door on my own. Rather, whether it be the front door or the restroom door I don’t want to wait for someone to come to my rescue.

    So, here’s my voice, my cause, my crusade. Mandatory installation of an automatic door (i) at the entrance to a business, and (ii) to at least one unisex bathroom.

    I welcome ALL comments positive and negative. I want to start mapping out the hurdles, identifying allies, and finding common ground. My wonderful husband gets credit for bugging me for the past year to take this on, and Jamie you get credit for today’s article. Whether it was “a sign” or a swift kick in the rear — you have gotten me off complacent quiet. Thank you.

    • Well said, my girlfriend and I both have MS. I was Diagnosed in 1995. A cure for this disease would be AWESOME. It would be nice to have affordable housing for for anyone with disabilities that’s not a assisted living facility for people with disabilities that takes all your money and leaves you $80.00 to live off of for THE month. The rent on for my girlfriend and I appartment is $1007.00 a month granted we split the Bill’s. Our APARTMENT instinct handicap accessible so it just makes it harder to get things done. The walls are all scuffed up for are wheelchairs and mobility scooter’s. The corners of this walls are busted up the carpet needs to be replaced but they want my girlfriend and I to move it that’s not possible for us to do. I’m not sure what to do anymore, I’ve lost most of my friends because of my disability as did my girlfriend. We both have kids I have 2 she has 1. We live in Carpentersville IL about 45 minutes from Chicago.

      • Jamie Hughes says:

        The housing crisis is a major issue for all Americans, especially for those of us who have mobility issues. There’s no reason two people should have to fork out more than 30% of their income on housing, and it’s high time we made Washington do something about it!

  4. Karen Scott says:

    Very well said. Let me build on your essay. People with ms need to adapt to their disease all the time and as master adaptors we take that attitude out to the community. No curb cut? No problem, we go around the block. No ramp? No problem, we find another restaurant. No accessible washroom? No problem, we pee our pants.

    I pay the same taxes as everyone else, why shouldn’t I have sidewalk access? A restaurant meal costs exactly the same whether you go around the block to the kitchen door, knock like a bootlegger, then pass the garbage cans and stacks of dirty dishes OR go up the stairs and through the expensively designed front door. A cup of coffee costs no less if you can’t use the bathroom.

    If I’m treated like a second class customer, why do I have to pay first class prices?

    I agree with you about privilege. Luckily I’ve had black friends teach me that I count too and that I can educate the world person by person. 500 down, 6 1/2 billion to go.

  5. Debra Hoffstatter says:

    Before I was diagnosed in 2004, while I considered myself an empathetic and aware individual, my diagnosis really brought me to a place of heightened awareness to those who have an illness of any kind, or even healthy individuals struggling with life and Parenthood! I am so grateful for what I do have, and this illness has taught me that kindness and supporting others is so important and more rewarding. Day to day things while can be a struggle, make me so grateful and full of enjoyment for the good days. We are all worthy of love. Spread it!

    • Jamie Hughes says:

      Debra, I couldn’t have said this any better myself. That was also my experience. And while this disease is certainly no fun AT ALL, in some ways, I’m glad it came knocking. It has changed me for the better in many ways.

  6. Catherine says:

    Thank you for your article. I have Transverse Myelitis which is in the MS family. I currently walk with a walker and have similar issues with access, brain fog and fatigue. I have lost most of my friends in the fifteen years since my diagnosis and mostly deal with family and acquaintances regarding my disabled status. I have to explain the need for the walker repeatedly because I don’t “look” hurt or on a good day will walk a short distance without it. The most difficult thing to deal with is being told to “power through” or that my forgetfulness is from the medication that makes it possible to get out of bed. I know they can’t feel my pain nor my desire to be “normal” or “able”. I am being defensive when I try to stand up for myself but continue to say the same thing and same defense until someone listens.

    • Jamie Hughes says:

      Catherine, I was thought to have TM until some further testing revealed MS as the cause of my woes. So yes, we are totally in the same boat. I know it’s exhausting, but we have to keep advocating for ourselves. Too often, what’s uncomfortable or painful gets pushed to the side in our culture (look at some nursing homes), but we cannot allow ourselves to be marginalized. We have to have the hard conversations. Of course, we should also have allies and take time out for self-care too. We can’t always be “on”. There’s a balance to strike, and that discernment comes with a solid and honest understanding of ourselves.

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