Mailing my spit

  So this is what making saliva samples to some of the preeminent Moebius syndrome researchers in the country looks like! They are actually going to sequence the entire genomes of both me and my parents, which is pretty cool! They gave me the option to get information on everything – even what’s totally unrelated to… Read More Mailing my spit


  The song lyrics from which this blog gets its title, last night in Concord: Still I can’t be still Still I can’t be silent Still I can’t be still Still I can’t be saved Still I can’t be still I can’t be silent Still I’m….still The insatiable peace My quest for, for true serenity, yeah… Read More Still…


Fittingly, I will be spending part of this 25th Anniversary of the Americans with Disabilities Act at work.     It is a good reminder for me to step back from obsessing over career trajectories and picking up more shifts and so on to think about the fact that it is in part because of the… Read More ADA25


We talk a lot about expectations in the disability community – about how they are too low for people with disabilities, about how children with disabilities are unchallenged and under-estimated, about how we need to set higher expectations for everyone. But sometimes, we underestimate ourselves. Today was one of those days for me. I was… Read More Expectations