Enabled/Habilitado: Thoughts on disability - Reflecciones sobre discapacidad

  Image Source Texto en Español sigue del texto en Inglés Recently, a former classmate commented on one of the posts in this blog, reminding me of a presentation on Spina Bifida I had made for class in the 8 th or 9 th grade (I was 14 or 15). I was deeply touched by the gesture, given how much this presentation had meant to me, and from a vantage point nearly 25 years in the future, I see it as actually the first step towards this blog existing at all. I do not remember the exact class, but I remember each student had to present on a topic of his or her interest. I overheard classmates discussing their topics: mythology, historical figures, inventions that had changed the world. At that point, I had been into aviation for quite a while, and briefly thought about presenting something on the Wright Brothers , or maybe Albert Schweitzer , whom I admired for his autobiography, medical work, and deep appreciation of classical music (especially Bach). I toyed around these topics, b...

  Texto en Español sigue del texto en Inglés When I started using catheters to empty my bladder at age eight, two warnings, on the back of each individually wrapped catheter caught my eye: “Single Use” and “Do not resterilize.” Pretty soon, however, it seemed these warnings would be easier read-than-done. For starters, growing up (and maybe even now), catheters were only available in big cities, like Mexico City, meaning an 18 hour or more bus ride for us from Chiapas. It was not a “be right back” kind of errand, done on a moment’s notice. Even in Mexico City, catheters were not sold everywhere, and were in fact quite hard to find. I remember during one trip there, we spent several days navigating the city’s pharmacies and medical supply stores, until we found one place, Médica Motolinía, that seemed to consistently carry a somewhat reliable supply (fortunately, in Mexico I did not need a prescription to get them). Aside from being hard to find in the size I used and in the numb...

  Texto en Español sigue del texto en Inglés In early 2013, I was hospitalized for five days with a complicated urinary tract infection. I wanted to notify my parents in Mexico, but my own phone was unreliable, and my parents and siblings were out of town with limited cell phone service. My fiancée Nor, despite being 13 hours ahead in Malaysia, told me she would let them know, and she did, passing along updates on my health, treatment plan, and logistics around my release. A few months later, she was in the hospital needing gallbladder surgery. From around 9,500 miles away, I arranged for some flowers and chocolates to be sent to where she was recovering and reached out through messages to family members to see how she was doing. As I mentioned this to a friend, he said: “Isn’t it a little early to be doing the whole ‘in sickness and in health’ part of the marriage vows? You two are not even married yet!” I met Nor in August of 2012. We had both enrolled in a graduate degree in C...

Texto en Español sigue del texto en Inglés Some years ago, I was at an office baby shower for a colleague. We played baby-related games (guessing the likely weight, size, and exact birth date for the baby, identifying sports and music icons from their baby pictures, going through favorite names, etc.).  As tends to happen at baby showers, the question of the baby’s sex came up. “Are you hoping for a boy or a girl?” someone asked. “Honestly, as long as the baby is healthy, it doesn’t matter” was the answer. It sounded so natural, so matter-of-fact, and I found myself nodding along approvingly. By then I had heard some variation of this exchange dozens of times if not more – with friends, family, and college acquaintances embarking on the  parenthood portion of their lives. This time, however, after the cake and best wishes were over, I found myself back in my office struggling to hold back tears. “As long as the baby is healthy” Such a common phrase, but what did that mean? In ...