Enabled/Habilitado: Thoughts on disability - Reflecciones sobre discapacidad

  Texto en Español sigue del texto en Inglés Last winter, as I was walking the dog around our town hall a block or so away, I found myself trying to navigate the dog, and two trekking poles on icy sidewalks. I slipped a couple of times and fell hard. I stopped to wonder on this – how despite the sidewalk having the required corner cuts, I was finding it so hard to actually navigate my way around, despite the icing over having happened several hours prior. I was reminded of how in college in Ohio, I often found myself walking on the street rather than the sidewalk because the sidewalk corners were piled so high with shoveled snow, or were so icy, it was very difficult to get onto the sidewalk itself. The street was easier, despite traffic. Back in college, I had smiled at this, because it is how I got (and get around when I visit) my hometown of San Cristóbal – one of the most beautifully inaccessible cities I know, with its driveways cut into the sidewalks, foot-high corners, and a...

  Texto en Español sigue del texto en Inglés One of the essays that moved me deeply when I read it was “On Seeing A Sex Surrogate” by Mark O’Brien. In essay, O’Brien writes about getting polio as a child and the complicated feelings around intimacy and his body as he grew up. Along with the conflict between his faith and intimacy, he writes also about just how embarrassed he was over his appearance and function, especially when he had to be bathed or otherwise cared for. A part of me resonated deeply with this writing. In a previous post, I wrote about rage, and how at times, Spina Bifida is a cause for rage for me and the degree to which my body cooperates or does not. On a deeper level however, and perhaps underlying the rage is a deep sense of shame. Shame at my pain and shame over the lack of “basic” control over my body can or should do. A few days ago, walking the dog, I felt the urgency to go to the bathroom, but by the time I felt the urgency, it was too late. I felt th...

  Texto en Español sigue del texto en Inglés When I was about 12 or 13 years old, a family came to visit the house in San Cristóbal. It was a couple with a small baby in a shawl. The family explained that their baby had been born with Spina Bifida. Unlike me, who had had a delicate multi-hour surgery to try to readjust the nerves in my spinal cord, however, the doctor this baby had seen claimed the lump in the spinal cord was just fatty tissue and had cut it, instantly paralyzing the baby. The parents recounted tearfully how the baby had been kicking, be it weakly before the surgery, but had come out with legs limp “like a rag doll.” The baby was also showing signs of hydrocephaly, with the head swelling every day with the fluids it could not properly drain. At one point, my mother called me aside and took me to a closet where we kept medicines and wound care. As some can perhaps relate, most of the medications in that closet were well past their sell-by date, and some had a colo...

  Texto en Español sigue del texto en Inglés In college one year, I remember seeing fliers for the American Cancer Society Relay for Life event on campus.  I remember reading about how this was to share support and fundraise for a cure for cancer, and people would be walking overnight, alone or in groups, doing laps around the track that followed the edges of the campus football field. This was something new for me. Outside of the occasional snippets of the telethons I watched as a child, I had never seen such a concerted and massive effort to fundraise for disability, let alone for a specific disability or illness. I was curious about this, and so I made plans to go and participate. I arrived that evening and was amazed at the music, lights, and energy of the event. There was music blaring from loudspeakers and the football field was brilliantly lit up. Hundreds of students and members of the community milled around stretching and chatting – many wearing either event-speci...