Finding Beauty

            Look in the mirror (full-length if possible), and tell me what you see. Describe yourself out loud. And be honest with yourself about what you see. Dove is doing something like this right now. Asking ordinary women to describe themselves to an artist. Each participant describes both themselves and another participant, so at the end there are two sketches of each woman. Most often, the women describe themselves in a slightly more negative light than the stranger does. Why? Why don’t we feel beautiful on our own? And why do we need someone else to validate our beauty?

            Beauty scares me. As a woman with a very visible, physical disability, I sometimes find it hard to feel beautiful. Sitting down 100% of the time, my body looks all scrunched together. Any curves that I possess (and I’m certain I have a lot!) become nothing more than little fat rolls. Full-length mirrors are extremely good at pointing these out. And yet, I can’t help but look into them. I search myself. I recognize my imperfections… my slight lean to the left… my slightly too large calves… and that vital fashion accessory- my wheelchair. If I stare too long at these “flaws”, I feel discouraged. Never ugly, but somehow less than beautiful.

From my own personal experience, it can be hard to feel beautiful in a room with women able to flaunt their height, legs, slim figure, etc. Most of these go unnoticed on me. But these moments in which I mourn the figure I will never flaunt pass quickly. In recognizing them, I recognize that I’m only human.  I take the time required to let such feelings pass. Then I look in the mirror again. And I see someone entirely different. I see a woman proud of her accomplishments and the goals she has set. I see the confident woman in a wheelchair that wants to change the world. That’s when my beauty shines; because I stop looking at what society sees and start looking at what I truly see in myself.

Society has spent so long showing us a certain type of beautiful, that the average person can’t possibly live up to. And why should we? I’ve learned over the years that beauty can’t come from what others see. It has to be something you see in yourself. So, I’ve asked a few friends to send me photos of when they feel most beautiful. These pictures show beautiful, strong women. Not because they are 5’9” with slender super model legs, but because they are confident. And it shows.

Natasha Santiago: Professional photo shoot called Divas on Wheels

Heather Kerstetter (on the right): "Nothing is the world makes me feel more beautiful than sharing my heart with an audience."

Kristen Dellinger: "I feel really really pretty in this picture. And not just because I can angle my phone's camera the right way to hide my double chin. But because I took that right after I did my makeup...all by myself. I hadn't ever been able to do it myself. But that day my mom and I got creative and made it work. I have a mobile arm support whose purpose is to hold my arm up. Well it worked, and I managed to moisturize my face by myself, and put on foundation, blush, mascara, and tinted lip balm. I felt so proud of myself, and I was happy to show it off… I relate a lot to this topic because I've always struggled with beauty and feeling pretty since I felt my wheelchair and atrophied body took away from conventional prettiness. When I can do my makeup by myself I feel like I've accomplished prettiness by myself, and the way that I want to do it."

Michelle Weger Harris: “For my entire life, I have NEVER thought I was beautiful. I hid my body. I hid my sexuality. I was terrified of being naked and vulnerable. It didn't stop me from being a woman and taking lovers though. But as I got older, it did. A very close and very talented friend of mine convinced me to let him do this portrait of me 3 years ago. It hangs on my bedroom wall. And even though my sex life is still a thing of the past, every time I look at this I realize that I AM beautiful. Still.”

The Ties That Bind

            I believe in the power of words. Generally speaking, I can understand both the argument for, and against, taking words used negatively and reclaiming them in a more positive light. But there are some words and phrases that I simply cannot, and will not own. I was confronted with one such phrase recently, and it is a testament to the pride I now feel towards being a person with a disability that I found it disgusting.

Wheelchair bound.

            Now, I would be lying if I said I always hated this term. In fact, as a freshman in college, I frequently used it to describe myself and other wheelchair users in research papers and personal essays. It was, after all, impossible to get around without my wheelchair. A close friend confronted me on my use of the phrase once. I remember replying that referring to myself, and others, as wheelchair bound did not bother me. I simply used the term to acknowledge the very visible fact that I could not walk. The negative connotation had never occurred to me at that point.

            The following year, a course called Psychology of Disability was offered as an elective. I jumped at the chance to learn more about a culture I was struggling to find my place in. I learned a great deal that semester; but I think the most important and impactful thing I learned was my ability to move past my perceived limitations. I was not, nor could I ever be, bound to my wheelchair. My necessary method of moving from point A to point B could never dissuade me from an achievement or goal. I went skydiving. I studied abroad. I lived on my own. I think it would be more correct to say that my wheelchair is bound to me, and I am bound only to my passions; to my desire to experience the fullness of my life and change the ever-present perception of what using a wheelchair means to society. 

What’s My Name Again?

A few years back, I was fortunate to attend a study abroad trip to the South Pacific.  A small group of 30 or so students and staff from the University of Tennessee at Chattanooga, traveled to Fiji, New Zealand, Australia, and Hawaii to observe the physical, cultural, and attitudinal access for people with disabilities in other parts of the world.  Best trip of my life.  All of us were so welcomed and the experience was beyond what I could have imagined.  Until we reached Hawaii.  In three foreign countries, people approached me as they would any other person in our group.  On the bus tour in Hawaii, however, I was routinely referred to as “the chair”.  “The chair” gets tied down in the back of the bus.  “The chair” will get off first.  “The chair” will go to the front of the line.  You get the idea.  Where was I in all this?  He didn’t even attempt to learn my name.  The moment my wheelchair registered in his vision, that is what I became and who I was.  “The chair.”

Shakespeare once wrote, “What is in a name? That which we call a rose by any other name would smell as sweet.”  We’ve all read Romeo and Juliet in high school, and if you’re one of the few who didn’t, then you’ve probably at least seen the movie or know the general plot.  If it wasn’t already obvious, Juliet loved Romeo for the person he was, not the name he carried.  Society has dictated for thousands of years that names are significant.  The right names bring with them honor, prestige, and even fortune.  Some, like Juliet, would argue that your name doesn’t really matter in the end.  Who you are is defined by so much more than what you’re called.  To these individuals, I would say that my name does matter a great deal.  Not for the riches and reputation it brings (or rather, doesn’t bring), but for the identification.

This cartoon has been floating around Google and Facebook, and I’m sure it can be found on other search engines and websites as well. 

I love this cartoon for its simplicity, and the cartoonist’s ability to apply humor to a situation that many people with disabilities face.  It reminds me of the all too frequent encounters I have had with people who want so desperately to place me in a certain category, they disregard my personhood.  They perpetuate the idea that having a disability (or whatever term you choose to use) makes me less of a person… less of Jean-Marie.

            I have a bookmark that defines the meaning of my name.  Perhaps the next time someone asks me what they should call me, I will reply with “God is gracious”.  This is the Hebrew translation of the first part of my name, which is what I most often go by.  In all the quick searches I have done on my name, disabled, crippled, handicapped... none of these words ever came up.  Having Muscular Dystrophy helps make me who I am, but it does not define me.  I am so much more.  True, my name does little to define who I am either, but it does identify me as a person, not a thing.  I’m not “the chair”.  I’m a human being with human flaws and traits, good and bad… I’m Jean-Marie.  What’s your name?