After Alex Landis died I was an absolute disaster. You see, we started this non-profit organization together in 2013 called NMD United. We talked nearly everyday about it and in the short, 2.5 years, of our friendship, the ideas we had for this organization, which focuses on serving adults with neuromuscular disabilities, could not stop forming. Alex handled the nuts and bolts; I was mostly just nuts, constantly calling her up and presenting new goals for NMD United that she

I posted last year on the day of my Annual-Evaluation-to-Verify-Just-How-Crippled-I-Am. My 2016-2017 evaluation happened just a few days ago and I would like to announce that I finally got my "toileting assistance" time increased from 20 to 30 minutes per day and some extra minutes for "feeding". (Wait! Hold your applause!) Unfortunately, because I have a working washer and dryer instead of a bucket outside to wash my clothes in, I can only get 70 minutes per week of help wit

One of my pet peeves is when they hire someone who is disabled to portray a disabled character. Ironically, they do do it very poorly, or if they do it well it becomes an award-winning role to act the way we act every day. Daniel Day-Lewis, Dustin Hoffman, Eddie Redmayne and Tom Hanks all have Oscars for playing people with disabilities. Conversely the best disabled actors are portrayed as people where their disability is seen as secondary. I understand part of it. The movie

Gradually, I have come to realize that August is a difficult month for me for a variety of reasons. Apart from the heat and humidity, and overall oppressive stench that periodically descends on NYC, there are a number of interrelated advocacy issues within the neuromuscular disabilities community which pop-up in August. These advocacy issues can be emotionally draining and serves to highlight that there is still a great deal of work to be done. Specifically, August is SMA awa