Just A Thought

            I’ve been working on my book a lot lately.  Trying to, anyway, in between actually working and attempting a social life.  I’ve been rummaging through memories in my head.  Remembering moments I have forgotten and missed, and some I have forgotten and longed never to encounter again.  But if I’m going to show people my life, I have to show them all of the most important parts that have helped make me who I am today.

It’s unfortunate to have experienced certain levels of hurt.  To know you were once in a place so dark, no light seemed possible.  There was a time when I couldn’t understand why I was given this life, even with all the beauty around me.  I couldn’t see the changes I was making being who I was, because I was too consumed with fighting it. But I am a beautiful person with a purpose or two in this world, and while I would like to forget these moments, I know they would be better remembered to help others through their own.

Writing is a bit of a struggle sometimes.  One minute I’m hitting roadblocks around every corner, trying to find the right words to capture my readers; the next, I feel like I don’t have enough time to get a thought written down before it escapes me.  Or I’ll be right in the middle of one thought, when I have to write myself a note on another before I forget it.  It’s a huge undertaking, to write your life out for the world to see.  But I’m learning a lot about myself in the process.  And if I can help at least one person to accept themself and be proud of who they are, then it’s all worth it.

Finding My Voice Again

            My time as Ms. Wheelchair Tennessee 2012 was a year I will never forget.  I learned a lot about the Disability Rights Movement.  More than I already knew.  I learned more about the struggles and hardships that people with disabilities faced as part of their daily lives.  It was just part of living back then.  Just part of doing what was necessary to survive.  Until people spoke up.  Until people like Ed Roberts and Judith Heumann banded together and forced society to let them in. In that year as Ms. Wheelchair Tennessee, I found more of myself.  More of the past that makes my future possible.  And I discovered how desperately I wanted my voice to impact the present… to change the future for others in the same way Ed Roberts and Judith Heumann changed it for me.

            In March 2013 I passed on the crown, so to speak.  Bliss Welch became Ms. Wheelchair Tennessee 2013.  In so many ways, she is perfect for this role.  And I know she will make us proud.  But I would be lying if I said it has been a struggle for me these past few months.  I am still active in the Ms. Wheelchair Tennessee Organization.  I lend my skills wherever needed to help Bliss, and to help this amazing organization grow.  There was some time, however, when I felt a lull… a loss in my life.  I felt as if I had lost the ability to speak out.  As if giving up my crown meant giving up my voice.

            I started this blog in an effort to share my life with others.  To remain open and honest as a person with a disability, no more or less human than anyone else.  I thought I lost my voice these last few months.  But I was wrong.  I forgot the most important lesson being Ms. Wheelchair Tennessee 2012 taught me.  The title might have handed me the microphone, so to speak, but I had to be willing to speak into it and make some noise!  Recent events have reminded me of this, and I am raising my voice once more.  My apologies for the silence while I worked on some kinks.  I’m back!

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.