Many of my passions are not fully accessible to members of the disabled and chronically ill community – and I’m angry.
I derive a great deal of my joy from two passions: time spent outdoors, and time spent creating and consuming art, especially photography and music. Fortunately for me, I am at a place in life where my body allows for the pursuit of these passions with very little adaptation. I have not always been so lucky.
Several years ago, shortly before my diagnosis of Complex Regional Pain Syndrome , I suddenly lost near all of the strength and range of motion in my left hand and half of my face. Having already been forced to back away from the sports upon which I had begun to form my teenage identity, the additional loss of the ability to play guitar, a personal coping mechanism and a hobby since age 12, was a hard blow. I attempted to re-teach my left hand to form basic chords numerous times throughout the years that followed, to limited success. I would finally make some progress, only to be struck down by a flare of my CRPS. Eventually, I began to accept defeat and slowly backed away from music as a whole. Only in the past year have I been able to return to playing guitar and see any real progress. This progress is only because my condition has, four years later, finally stabilized somewhat.
Take a moment to consider how many creative pursuits rely on the artist having not only fully functional arms, hands and facial muscles, but well developed and trained muscles at that. Consider how mainstream artists are represented: able bodied, often even graceful and athletic. In my personal experience, very little support is offered to disabled and chronically ill artists. Myself and many of my friends who face similar struggles simply abandoned our creative pursuits when our bodies began to deteriorate. I do not believe that this is an acceptable ending for our complex narratives. We lack adequate representation, and we lack adequate adaptation.
As long as there is little to no visibility for disabled and chronically ill artists, it will not be perceived as an attainable goal to those who might aspire to become one. As long as there is limited to no support available to aid artists in working within their physical limitations to achieve their creative goals, there will continue to be those who are forced to accept defeat.
Members of the disabled and chronically ill community have some of the richest, most beautiful and complex life stories that I have ever encountered. These stories deserve to be told, and deserve to be told on our own terms. I hope to some day see change within creative industries that allows for this.