They See Me Rollin', They Hatin': On the Flawed Reputation of Wheelchairs in the CP Community
On July 26th, I got the call I had been waiting for. After x-rays, therapy appointments, video evaluations and a grueling waiting period, I was accepted as a candidate for Selective Dorsal Rhizotomy surgery. Perhaps the most exciting part of this call was hearing the team's predictions for me. They said I'd experience a marked improvement in my comfort level, have increased endurance while exercising and stretching, have an easier time walking in protected environments, and that my spasticity would stop progressing. Amazing.
However, the therapist continued, "Dr. Park does not believe you will have the ability to walk independently full time. You will probably continue to use your wheelchair, you will just have to see what's most comfortable as your recovery progresses."
Since I began my research into SDR surgery, I've seen the same comments made time and time again by both parents and patients alike. "If I don't do this now, my child will most likely end up in a wheelchair." "I wish my parents would have done this for me sooner, at age 20, I'm now a full time wheelchair user.' 'Wow, I'm so sorry", the replies say. These post explode with "sad" reactions. These comments evoke a sense of urgency that they must save themselves or their children, before it's too late. With each of these comments, I'm reminded of a sad and flawed perception: in the Cerebral Palsy community, using a wheelchair is still seen as giving up.
When I was 11 years old and faced with a large junior high campus, using a wheelchair became a more realistic way for me to navigate the world. Instead of struggling to keep up with my peers, I could easily cruise beside them on our way to class. I could independently carry my books or my lunch. Most importantly, by the end of the day I wasn't exhausted, with aching feet and knees from my grueling, unsteady gait.
Since middle school, my wheelchair has been my near constant companion. Together, we've graduated both high school and college. She has taken me across sprawling university campuses that would be impossible for me to traverse in my walker, or on my own. We've traveled across the world together and dealt with less than accessible places. My sports wheelchairs have allowed me to play rugby at a competitive level. My wheelchair has led me to meet the people I'll call my best friends for life. Using a wheelchair has given me a kind of freedom and independence that otherwise would have been impossible.
Most people think I'm pursuing this surgery with the end goal of normalcy in mind. When I post videos of myself walking, they explode with love reactions. Some people even call it a miracle. People think that walking, with whatever level of difficulty, is preferable to using a wheelchair. But, when I think of my post surgical goals, walking is at the bottom of my list.
I want this surgery because I want to be comfortable- to put an end to the constant spasms and cramping I deal with in my legs. After surgery, if I can put my shoes on without help, I will be thrilled. I want this surgery to put on skinny jeans without needing to take a break halfway through, to stand at the sink and do the dishes, without needing to sit down. There are a whole host of goals that people with disabilities can work for, that have nothing to do with walking at all.
When we use independent walking as the only metric for success, we lose sight of the intermediate gains that have the potential to change lives most significantly.
I am grateful for my wheelchair and all the doors that she has opened for me. My goals have grown and changed over the years, with the most constant being the pursuit of a stronger, healthier, body. No matter the outcome of my SDR surgery, my wheelchair and I are in it for the long haul, and that's okay. I hope that together, we can change perceptions of mobility devices in the CP community. My wheelchair doesn't limit me, she sets me free.