Enabled/Habilitado: Thoughts on disability - Reflecciones sobre discapacidad

  TEXTO EN ESPAÑOL SIGUE DEL TEXTO EN INGLÉS A few days ago, I went to the gym for a spinning class. I felt a little bit of pain where the suprapubic catheter is inserted, but ignored it for the most part. Upon finishing the class and feeling like I needed to go to the bathroom, I was somewhere between surprised and irritated that a fair amount of blood came out along with my urine (on some level, I attribute this in part to the motion of cycling which may cause the catheter to scrape along the internal tissue). It was not the first time it happened, and on some level, it highlighted a frustration I have : the tension of when taking care of myself seems to cause pain and complications, while simultaneously setting the groundwork for a longer, healthier life . It is a tension I feel in the best intentions of others as well. I sometimes hear “well if you only did x”, or “How hard can it be to do y?” The strange thing is many times, that is true, i.e. it is simple to do the specific a...

  In the mirror I see you With my hands I touch you With my thoughts I condemn you Through my words I defend you   Sometimes in vain I struggle with pain I ponder the embarrassments being worth the gain And feel tears well and fall like the rain   I commend and condemn you, dear body of mine My shackle, my chain, my temple, my shrine I struggle and fight with the scars on my spine While in them I search for a purpose divine   Nurses and doctors meet you with gazes That shape, mold, and build my self-esteem mazes The touch, the yanks, the handling, and grazes Motions repeated throughout our life’s phases   And yet through the years we’ve been showered with blessing As people around us you continue impressing And despite my attempts to keep you oppressing I know that I need you and that you need caressing   May I use you to walk with the shadows of others Sisters and brothers, fathers and mothers May I listen for hope in their words to discover ...

  TEXTO EN ESPAÑOL SIGUE DEL TEXTO EN INGLÉS In 2018, I was approached by the acting president of the Disability Action Group (DAG), an employee resource group at the Department of Labor, to see if I was interested in running for president. I was a little shocked and honestly, not that enthusiastic. I had once seen a motivational placard reading “Lead, Follow, or Get out of the way.” My approach had usually been “Get out of the way” or “Follow” when all else failed. My previous attempts at “leadership” had been mixed at best, with a disastrous term as “class president” in the seventh grade, an only slightly more successful stint as president of the Wooster Scottish Arts Society (WooSAS) in college (noteworthy for the community music jam sessions I was able to expand and the number of cans of haggis I once had to order for an event) and as coach for a few personal development courses. For the most part, however, my mantra had focused mostly on “getting out of the way” and letting o...

  TEXTO EN ESPAÑOL SIGUE DEL TEXTO EN INGLÉS In early 2019, towards the end of a two-week hospitalization for an epidural abscess, I asked my mother if she could get me a stack of blank “Thank You” cards, so I could write out my appreciation to the various nurses, doctors, and occupational and physical therapists who had looked over me during my stay. As I gave a card to one of the main physicians in charge of my care, Dr. Edward, he said in a booming voice: “Thank you. You know getting cards like these from patients are like rocket fuel for us doctors.” I looked at him briefly and responded, “Thank you, though I know how quickly rockets can go through fuel, and some days probably feel the same for you.” He looked at me a bit surprised. “True” he said, in a softer tone (and mind, this was about a year before COVID took that stress to a whole new level for doctors, nurses, and hospital staff – not to mention patients). It was as if for a few seconds he saw and appreciated my tryin...

  TEXTO EN ESPAÑOL SIGUE DEL TEXTO EN INGLÉS Some time ago, as I was re-reading some Calvin and Hobbes comics (which I have loved for years), I came across one where Hobbes asks Calvin, “How come we play war and not peace?” to which Calvin replies “Too few role models.” I have thought about this exchange in various contexts recently, but specifically regarding disability and the “warlike” way in which it is often framed. I feel I constantly hear about the “war” against one disease or another, how people “battle” one disability or are “survivors” of another, the emphasis on “overcoming” the body and somehow forcing it into submission. Even nurses and doctors (especially in the context of the pandemic) turn into soldiers of some kind “on the front lines” of the various battles and wars against illness and disability.   On some level, I get the analogy. As a child, one of my favorite items of clothing was a light blue t-shirt with “Spina Bifida Doesn’t Stop Me” printed in a d...