Enabled/Habilitado: Thoughts on disability - Reflecciones sobre discapacidad

  Texto en Español sigue del texto en Inglés After a little more than five years doing monitoring and evaluation work, which included a fair amount of traveling, I wanted to move towards something more stable, with a clearer (at least to me) path of career progression. Consulting work, fascinating though it was, seemed to be tied to frantic, late-night proposal writing sessions, and a certain sense of precariousness. I also did not quite understand the promotion paths, or how my overall career would advance over time (both at the company itself and in the sector overall). How I moved from a Research Assistant II to a Research Assistant I (whatever those meant), seemed almost more luck than anything. In fact, some of the most fascinating (to me) assignments I carried out, were not necessarily meant for me at all. I simply "ended up with them" due to a consultant or colleague being ill, recently retired, or in the process of moving on to another employment opportunity. Althou...

After my experience applying for the Peace Corps , I was a man without a plan. I frantically applied for a few jobs near the college from which I was graduating but was ultimately unsuccessful. I moved back to Chiapas with my parents while I tried to process what had happened, and my next steps. While there, I volunteered at a local museum – cleaning artifacts from the museum’s collection, and translating a book from one of the museum’s co-founders, Frans Blom into English. I then spent a few months with a human rights organization , mostly organizing files and transcribing testimonies on incidents of abuse from the government and the military in some of the surrounding communities. I was interested in getting back to the United States, however. I feElt adrift even in Mexico, and some part of me also worried about getting the healthcare I would need. Already, as I had left Milwaukee’s St. Michael’s Hospital for the last time twelve years prior, many doctors warned that the same inte...

    Texto en Español sigue del texto en Inglés In November of last year, I had the privilege of being a guest on a podcast centered on reimagining life with chronic pain and disability . The conversation centered on the intersection between disability, work, and being constantly “reimagining” my care, opportunities for work, and the shift in how I thought of my career, from working despite my disability to how the work do currently is informed by my disability. While recording the interview, my host RiRi’s thoughtful questions and wonderful empathy had me thinking about the complex ways Spina Bifida has shaped my professional life. I thought about how over the course of a couple of decades, opportunities have come and gone, in part dictated by my desire to either center Spina Bifida in my work or get as far away from it as possible. As a child, what I wanted to be for the longest period of time was a doctor. Part of it was my family history – my father trained as a me...

  You carry the mark of our history Of pain unacknowledged, of trauma and family Of Maleness with presence often ominous The illusion of strength and history of dominance   At times you have learned your feelings to hide As pain, shame and sadness you’ve kept well inside Your chromosome Y you sometimes abhor                                                                                      While some hope in men you seek to restore   You move uncertain in the footsteps of intimacy Your skin shaped by touch with no care for privacy Of ancestors troubled through chains of depression Masculinity shaped through guilt and repression   I see you divided, divine and mundane As validation and love for you I obsess to obtai...

  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...