“Disability is not a brave struggle or courage in the face of adversity. Disability is an art. It’s an ingenious way to live.”—Neil Marcus
We at the Disability Studies Initiative remember the life and work of poet, actor and playwright Neil Marcus, who passed away last November.
Marcus proudly embraced his dystonia, a hyperkinetic neurological disorder characterized by involuntary muscle contractions which result in tremor-like movements, becoming a leader in the disability culture movement.
But we are especially proud that the work he is perhaps best known for, Storm Reading, was first performed in Santa Barbara at the Lobero Theater in 1988. It then travelled across the United States for the next eight years. As he notes in the play, “Some people, when they see my twisted frame, dystonic disarray, embrace the storm… their eyes light up and they rush to hug me as a long-lost brother, as if embracing a storm was food for their soul. I can teach you to read a storm.”
His commitment to disability culture was sustained and deep. As he put it it in one of his poems from 2014:
“If there was a country called Disabled, I would be from there.
I live disabled culture, eat disabled food, make disabled love,
Cry disabled tears, climb disabled mountains and tell disabled stories.”
