“You’ve got a friend in me.”
The title of my favorite Disney theme song, by Randy Newman, has never had greater significance for me. The last thing I would’ve expected to be my friend has, in the depths of grief and sorrow, become my strongest ally.
I am a 26-year-old artist and disability advocate from Singapore and a proud Duchenne muscular dystrophy survivor. Why survivor, you may ask? I believe people living with Duchenne are more than passive recipients of healthcare, which the term “patient” seems to insinuate. To me, Duchenne doesn’t just refer to the most common and severe form of muscular dystrophy, but a shared cultural philosophy toward the relentless adversity, excruciating grief, and suffocating isolation unique to those with Duchenne.