Confession time: Even though I shout disability pride and loving your body from the rooftops to anyone who cares to listen, I still have a certain amount of hatred for my legs.
I have cerebral palsy, which means my legs have a particular golf-club-like quality to them. Long, rigid legs end in an ankle that doesn’t really move and a foot that resembles a plank of wood. My toes overlap with one another. Circulation issues mean that my feet are constantly cold and occasionally turn shades of red or purple. The uneven muscle development that is commonly seen in people with CP causes my thighs to look huge and my calves to be practically nonexistent. On top of all this, I have two scars per leg due to surgery, and I often fall over or bang into things, which means my legs are liberally sprinkled in bruises all the time. When I walk, my knees don’t straighten or bend all the way. I look, in short, a bit like Frankenstein’s monster.
Usually, I’m just okay with my legs. After all, they’re there and they’re a part of me, no matter what they look like. But sometimes, the hatred sneaks up on me. Especially in public spaces, I’m overly conscious of the way my legs move or don’t move, how my feet slip off the footplates of my wheelchair, how my legs refuse to bend neatly and stay in one place. Depending on the shoe and my level of spasticity that day, I may inadvertently emulate Cinderella and lose a shoe or two along the way. My dental hygienist has told me I bear the privilege of being the only one she’s ever treated who has had a shoe fall off during treatment. (I ended up having to ask her to fetch it for me.)
Ironically, the shame hits hardest when I’m getting a pedicure, something designed to make my feet look prettier. The ladies at the nail salon are often taken aback when confronted with my…unique feet. As soon as they try and touch my foot, the spasms will kick in and my foot will shoot out of their grasp, causing uncomfortable giggles all around. I find myself continually apologizing for my feet.
And I’m not even talking about the rest of my body, from head to toe, which looks differently and acts differently than the societal standard of what it “should” be. My body causes people to stare and not in a complimentary way.
In an age where cosmetic surgery and other treatments are a matter of course for making our bodies more “beautiful,” a body like mine is an affront to the sensibilities. Even after all this time working for disability rights and disability pride, there’s still a skeptical voice that pipes up in the back of mind when people call me “beautiful.” Really? it says. What about me is beautiful? Surely you’re joking. Surely you’ve got the wrong girl. I’m not beautiful. At best, I view my body as just sort of average, nothing overly special. I’m nice-looking enough, I guess, I think. Not everyone can be beautiful. Just accept your lot in life and move on.
But when I was in my teens, something happened that made me re-think everything I thought I knew about the relationship between my body and beauty. I joined a dance program called Dancing Dreams, specifically for girls with disabilities. (The program has expanded now and even includes a couple of boys!) At the time, I thought dancing was in the realm of gymnastics and ice skating for me – just something that I couldn’t do. And even if I could, I certainly couldn’t do it well, I thought. But nevertheless, when I saw an article about Dancing Dreams in the paper, I impulsively emailed the founder, Joann Ferrara, and asked if there was any way she could create a class for preteen and teen girls. Her response was along the lines of “Find some more girls who want to do it, and we’ll do it.” I pulled in some of my camp friends, roped my best friend into going with me, and from there the “older class” bloomed.
Joann is a physical therapist with a background in dance, so she knows exactly how bodies like mine move. She choreographs all the dances using simple movements and ballet techniques that we can all do. Each spring, Dancing Dreams has a recital where we get to show off what we’ve been working on to all our family and friends. My first recital was in 2008 and, when I watched the video later, I was amazed. My awkward, gangly, spazzy self had been transformed into someone….graceful! My newfound sense of beauty grew even more when Dancing Dreams brought photographer Hiroko Shono on the scene to photograph our classes. Hiroko seemed to capture the beauty of our different bodies effortlessly and, to this day, her pictures of me are some of my favorites.
This is one of the best photos Hiroko took of me.
[A black and white picture of me at age sixteen wearing a leotard, lying on a wood floor with my hands under my head. I’m smiling and the many “awareness bracelets” I have on my wrist are visible. The photo is angled and the wheel of a power wheelchair is just visible in the top left corner.]
Every week in dance class, I moved my body in ways that I never thought possible. Unfortunately, that time had to end. In 2010, I was graduating high school and going away to college. I was the first dancer ever to “graduate” Dancing Dreams and leave the program. Joann had the idea to have me do a solo in that year’s recital, and I was positively ecstatic. From the get-go, I had several strong ideas about my solo:
- I wanted to choreograph it myself. Over the years, Joann had taught me a lot about what my body could do, and I wanted to put those skills to the test.
- I wanted to use my body to my advantage. Unlike many of the girls in the program, I was able to (with some difficulty) get up and down from the floor and move comparatively quickly across the stage. I wanted to work with what my body could do to create a dance that was uniquely choreographed just for me.
- I wanted to use a song that had meaning for me. Music is extraordinarily important to me, and I wanted to use a song that I loved and that reflected the momentous meaning of the occasion – my last recital and a sign that I was moving onto bigger things.
Eventually, I settled on “Time of My Life” by David Cook as my solo song. With some help from my mom, I choreographed my dance and practiced it tirelessly in my living room. Joann had a simple, pretty costume created for me and before I knew it, it was recital day. I was terrified, but I relaxed into the dance and let the movements take over, and then, quite suddenly, it was done. I had danced, on stage, by myself, in front of hundreds of people – something that would have never occurred to me in my wildest dreams. My best friend came up to me afterwards and said “Cara, I’m completely serious – you looked so graceful!” She got her solo the next year, and I think she looked even more graceful than I did. My solo is available to watch on YouTube and, every time I watch it, I’m reminded of how much fun I had doing something I never thought I could do. (If the video doesn’t start at the right spot, my solo begins around 1:50. Disregard the title. That was a mix-up – though I won’t deny that I like attention every now and then!)
I still don’t typically think of my body as beautiful. But thanks to Joann Ferrara and Dancing Dreams, I realized that it could be. Those lessons are ones that I keep close to my heart, five years after aging out of the program. Beauty can be found in the most unexpected places – including during a dance rehearsal for disabled girls in a little senior center rec room on Thursday afternoons.
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*If you enjoyed this piece, please consider supporting Dancing Dreams. Dancing Dreams is a non-profit organization. The program is growing exponentially and now includes two different locations. Joann choreographs all the dances and creates all the costumes to fit over a standard white leotard and tights. She is a powerhouse, and Dancing Dreams is always in need of money. Check it out at www.dancingdreams.org.
[Headline image: The image shows a drawing of two dancers, both in black and white, against a black background. The one on the left is visible from the front and has her left arm raised parallel with the floor and her right arm by her side. The figure on the left is visible from the side and has her left arm upraised and her right hand on her hip with her head tilted back.]