Patterns and Habits: What do you notice about the ways you choose to move through the world? How do these versions vary based on a given context (i.e., difference between work & home, childhood & adulthood)?
I started my life technically able-bodied, but awkward. By 2, I was taller than the average 4-year-old. My body was always trying to catch up with itself. I became disabled at 11, and over the decades my body twisted to the new hip. I walked using fore arm crutches; my gait was like a Monty Python sketch. I could turn my foot completely backwards as a party trick. When I got a new hip at 26, my body didn’t know what to with it. My muscles weren’t set up for being able-bodied. I lost the ability to walk altogether. Your gait is fixed in the mind during puberty, so for a whole year I retrained my body slowly. Everywhere I went, I’d say heel toe, heel toe, heel toe. Trying to teach myself what should have come naturally. And I had a few years where I could hike and walk without having to think at all. Now, all these gaits are within me, overlaid on top of one another like a badly developed photograph. There’s a fuzziness to my movements. My muscles tug in multiple directions at once.
Tell us a personal movement story that has stuck with you. What clues does it offer you about who you are/were/strive to be?
I should probably tell a story about the Paralympics, but my mind returns to when my mom signed me up for dance lessons when I was maybe eight. These were community centre dance lessons, nothing fancy. No tutus in sight. But I was so tall and uncoordinated that the dance instructor felt I could not dance in the final recital. Instead, they dressed me up as a giant neon foam rubber dinosaur. (It was the early 90s, so everything had to be neon). My job was to roar (but not too loudly!) and move on the sidelines (but not too much movement!) while all the petite girls danced in unison. Unfortunately, the costume wasn’t finished until the last minute, so I didn’t do any rehearsals with the dinosaur costume. I kept tripping girls with my long tail because I was apparently very committed to embodying my dinosaur character.
I used to use this story when I gave talks to schools about my wheelchair basketball career to illustrate the point that disability is a social construct. My height, which was a benefit in wheelchair basketball, made me horrible at dance. I’ve also received a lot more shit for being a tall woman than I have ever had for being disabled. But I also chose this story because it illustrates an apart-ness that I have always associated with my body, even before its difference had a name.
Barriers and challenges: What are some barriers or challenges you face or have faced that have impacted your access to a movement of choice? How have these influenced your thinking about your body in the world and the role of movement in your life?
In my life, I’ve used a wheelchair, crutches, a cane, and I’ve walked independently. But I was also an elite athlete and I have a lot of privilege because I’m white, educated and come from a fairly well-off family. I didn’t think about systemic ableism until I started passing as able-bodied. I stopped using my cane and it was as if I’d been cast in some Cinderella production. My life really changed overnight. Dating was easy. Finding a job was easy. No one said anything to me on the street. For decades, I’d felt that if I just put in more effort — to be more charming, more charismatic, more confident, to take this course or read that book — I would get the things I wanted. I was all about personal responsibility and self improvement. But it was never about me. It was about my disability. Which, in a sense, is more terrifying. When you blame yourself, you at least have the hope that you can overcome your problem with enough effort. When you realize the problem was actually systemic, now you have to try to change the system.
Connections: Physical movement can be a useful metaphor for any number of things. How and in what ways do you use your movement choices and experiences to make meaning in other areas of your life?
I can’t forget my body because I’m in pain every day. Pain is so central to my daily experience that when I had an imaging procedure where they put anesthetic into my hip and back, and I stood up without the experience of pain, I fainted. But, pain grounds me to my body. My writing has a lot of physicality because I can’t forget my body.
But, I’ve also learned that a lot of the metaphors I used to try to translate my pain into meaning were damaging. My motto has been: I am comfortable with being uncomfortable. But, for many years, that somehow morphed into “I am only comfortable when I am uncomfortable.” Which morphed into “I will try to make my life as difficult as possible.” I am trying to find metaphors in my body — especially since becoming a mother — that are less about overcoming and more about care.
Becoming a parent has also taught me a new metaphor about my body. For years, I would push myself and then crash. But, you can’t crash when you have a toddler. I can’t work out — which breaks my heart, because working out is my favourite thing — because it causes too much pain and weakness. I have to be able to hold my daughter. I have to spend my energy to bend to put on her clothes or bathe her or lift her into her high chair. I have been really struck by the discovery that children leave bits of DNA in their mothers’ body and brain. It’s drawn my attention to how connected we are.
All images courtesy of Arley Cruthers.