I walked to work this morning wearing my earphones and listening to music on my iPhone (as I always do when I am out). A lady stopped me on the street and asked me if I was okay. I said I was and I asked her why she asked. She said she hadn’t noticed that I’d had earphones in and that I’d been wobbling a bit. I told her I was physically impaired, but I said it in a matter of fact way rather than a snappy way that would have put her down. I understood that she was just genuinely either concerned or curious, and I tried not to take offense to her question. I have often asked the professionals whom I work with (massage therapists, physiotherapists, pilates teachers, yoga teachers, and doctors) what makes my walk noticeably different. They, being medical professionals and healthcare providers, cannot look at my body the way an untrained and inexperienced person would. They will always take in my posture, gait, and body with a critical eye. ‘Normal people’ on the street will often point out my limp to me (as though I’m unaware) or ask me what is wrong with my hip, legs, or feet. I really wish I could step outside of my body and really see what other people see that is ‘wrong’ with me. I have seen my walk recorded on video camera, but the recordings have always been of me in a controlled environment (like a physiotherapy clinic or someone’s home) rather than a real-life situation like a busy London street.
I really wish I could stand in front of someone and have that person look at me and tell me what they see wrong with me. I would like to understand my body from the perspective of someone who has no medical training but who can still see that my body is different. I think it would help me better understand why people feel the need to ask about my body and the way that I stand and walk. If I gain an outsider’s perspective, I might react to people with less anger and frustration (and internal self-blame) and more understanding. I think I end up defensive – or at least hurt – when people ask because I myself wouldn’t ask someone if I saw that person limping or walking in a different way. I used to ask people who were visibly different what happened to them (or what was wrong with them) when I was little, but I realized as I grew up that I didn’t like being asked, so I stopped asking people. I’ve noticed that people with visible and invisible problems will open up to me about them if they trust me enough or if they have to ask for help in a particularly difficult situation or circumstance. Otherwise, people seem happy to live their lives and go about their days without talking about their individual health problems.
One of my friends who also has cerebral palsy – more severely than I do – recently told me that her disability makes up a very small part of her identity. She doesn’t let her disability consume her and she doesn’t let it make up the majority of who she is in terms of her personality, her place in the world, and her motivations in life. Her perspective is admirable and, admittedly, not one that I share. I have let my impairment comprise so much of my identity, particularly since I work every day to overcome my disability. The constant fight that I fight also gives my life purpose and meaning. My friend whose cerebral palsy is more severe has found other ways to make her life meaningful.
Sarah is currently raising funds for the Friedreich’s Ataxia Research Alliance. Please visit the following link to contribute to her courageous and altruistic cause: http://www.gofundme.com/23p8pw.