Enabled/Habilitado: Thoughts on disability - Reflecciones sobre discapacidad

  Texto en Español sigue del texto en Inglés From the ages of eight to fourteen, I went to St. Michael’s Hospital in Milwaukee for a treatment named Bladder Stimulation. This treatment was based on the premise that electrical stimulation might strengthen the bladder muscle over time “teaching” it to contract and relax as needed, more effectively holding in or releasing urine. The treatment was not widespread and only a handful of places around the country did it at the time. St. Michael’s Hospital was a large building, standing six stories high, and with two basement levels. An imposing statue of the Archangel Michael, sword in hand, stood in the lobby. The third floor, northwest, housed the Spina Bifida Multispecialty clinic. Here is where I would spend most of my mornings. While the bladder stimulation treatment itself only lasted 90 minutes or so, this was almost always extended by other tests and appointments. The first order of business every day of treatment, was for me to go...

  Texto en Español sigue del texto en Inglés I once asked my colleagues as part of a team-building exercise, to name a place that had a role in shaping who they are today. I was fascinated by the answers: from the military base where one colleague did her Basic Combat Training, to Germany, where another colleague met his wife. It was interesting to hear about the places that shaped people and why. For me, I can say one place that left one of the biggest marks on who I am today is the Ronald McDonald House of Eastern Wisconsin . I first arrived at the Ronald McDonald House with my mother on the night before my eighth birthday. The House, a red brick building on a hill in the city of Wauwatosa, just outside Milwaukee, stood big and imposing in front of my little self. This was not exactly Plan A. When my parents first heard of bladder stimulation treatments through Julie, a friend of my mother’s living in Stanford, who had visited Chiapas frequently, Milwaukee was not on the list. ...

Texto en Español sigue del texto en Inglés In 2019, I was hospitalized for two weeks, because of an epidural abscess . Throughout my stay, doctors were using charts with emoji-type faces instead of numbers to capture my pain level. The intention was good I am sure, but the approach seemed mysterious.  I remember wanting to say, "I guess I'm somewhere between 😟, 😖, or 😭but closer to which? I have no idea."  The alternate way of getting at my pain level was numbers on a scale. There again, I kept wanting to say something like "I feel like an 8.5? Can I do decimals? How many?" These were frustrating exchanges because numbers and faces were the only tools we had to communicate such an ‘abstractly concrete’ feeling like pain.  My frustration on pain had my brother Andrés remember a quote from Elaine Scarry’s The Body in Pain : “To have pain is to have certainty ; to hear about pain is to have doubt .” (13)   The quote rang so true for me. I thought about grief – h...