Columns

I didn’t know many kids with Duchenne muscular dystrophy growing up. Everyone around me was physically able; I was the only one who couldn’t keep up. Now, as I’ve gotten older, I understand the importance of finding friends who have the same disease. When I meet someone…

In the disability community, which is as diverse and broad as any other, there is a debate over terminology. I have seen this play out on my Twitter account and in other places. I have also seen some very strong feelings on all sides. The muscular dystrophy community…

I discovered something different about Washington, D.C. when I moved there for the summer: wheelchair-accessible Ubers are everywhere. Los Angeles, where I come from, has a dearth of accessible Ubers. Having the ability to take an Uber with my power chair opens up a…

I recently attended The Speak Foundation’s 11th Annual Conference. This event is for individuals with neuromuscular diseases and their families. We met in the beautiful city of Atlanta, for what turned out to be an exciting few days. This was also a fitting prelude to the upcoming National…

Duchenne muscular dystrophy is not easy for people to wrap their heads around. Most haven’t heard of the disease, which is rare and affects about 1.02 males ages 5 to 24 per 10,000 in the United States. When people see me walking, they might…

It’s hard to find time to spend outside, especially since I have a disease that hampers my mobility, but being outdoors reinvigorates and reboots me, and reconnects me to nature and God. During weekends I could lie under the covers well into the afternoon and watch…

Spoiler alert: This column contains stories from the book “Strangers Assume My Girlfriend Is My Nurse,” by Shane Burcaw. It was during one of my late night YouTube browsing sessions when I happened upon a video about an interabled couple whose names are Shane and Hannah. I was intrigued, seeing…

I recently started my internship at The Washington Post in Washington, D.C. Getting to this point was a culmination of blood, sweat, and tears throughout all levels of education, and it’s not going to get any easier in the professional world. Establishing myself…

This column is a particularly nice one for me to write because of my love of bicycle riding. I began to bike in 1988. I was 29 years old and looking for a better way to stay active while enjoying the months of nice weather in Chicago. Stationary bicycles are…

My early years in this world were spent being a girlie girl. Along with my stash of crowns and fake pearls were things like brightly colored nail polish and some mini lipsticks bought at Sally’s Beauty. Little did I know that as I grew older and my mitochondrial myopathy…