Thirteen
I’ve never worked so hard for something that both terrified and freed me. I have also never felt so conflicted about achieving a long-time goal.
My new, custom wheelchair was delivered to ECMC yesterday. I went to have it fitted, much like a new pair of glasses. Few experiences are both a celebration and a heartbreak like this one. I achieved a major accomplishment—an accomplishment prompted by the weakening and failing of my body.
In the physiotherapy gym, my mind split into thirds: ‘I’m making all of this up,’ ‘The world is so, so inaccessible,’ and ‘What must people think?’ Imposter syndrome settled into my bones, chilling my skin and quickening my pulse. What was I doing here?
A full year’s worth of medical professionals participated and agreed that a wheelchair was a medical necessity. I’d been diagnosed with an autoimmune disease destroying my bones, an autoimmune disease destroying nerves, and a condition that makes the body come apart. I didn’t make anything up. I know that. And yet…
The world around me is wildly inaccessible to disabled people. My access needs are numerous and complex. I know they could be even more complicated. I already feel like the loudest thing in the room. Entrances, steps, doors, restrooms, homes—the list unravels. I alternate between adapting my needs around what is available and believing accessibility is inviolable, sacred. How dare I think to lessen my needs for the comfort of others? And yet…
The majority of able-bodied people have a narrow and limited view of disability. Canes are for the elderly, feeding tubes are for children, and wheelchairs are for people whose legs do not work. I sigh. Disability is infinite. How can I contort my body to say, ‘My legs move, but I’m not faking anything’? Why are they so concerned with what is and isn’t ‘real’? Why am I so concerned with the opinions of strangers who know nothing of my private, personal matters? The worst parts of disability stem from the non-disabled world.
I have never wanted to be an instrument of inspiration for able-bodied people. I want the life they take for granted. I did not choose this, and I will not let it ruin my life. I will have my needs met. I will seek safety and security in accessible spaces and among supportive people. I will allow my body what it needs to exist, painless and capable. I will become undeterrable in the fight for a world made accessible.
There are countless people to thank. As I dream of how, I feel the absence of others who look like me within arm’s reach. I hope to find them, to be seen by them, and to have my world made accessible by the people who love me. I hope to honor my body without fear. I hope to show gratitude for how I got here. I thank myself for the fight. I am grateful to myself for the work. I will make my life easier, and I will not stop.
