Fascinated with the idea of understanding disability as a culture, historian Steven E. Brown was awarded a fellowship in 1993 and, with his wife and partner, Lillian Gonzales Brown, relocated from Oakland, Calif., to Las Cruces to conduct research.
When I first started talking about disability culture, a colleague, Harlan Hahn, said fast food was part of our culture. Steven Brown explained that phenomenon: Drive-up was accessible to us both physically and economically, he said, so it was often what we ate.
“If we do not understand our own culture,” he said, “how can we expect others to do so, let alone understand why our culture is important to us?”
The late anthropologist and Santa Fe resident Edward T. Hall said, “One of the most effective ways to learn about oneself is by taking seriously the cultures of others. It forces you to pay attention to those details of life which differentiate them from you.”
But disability is part of everyone’s culture; it impacts all of us, according the U.S. Centers for Disease Control and Prevention, with 1 in 4 American adults reporting a disability.
In New Mexico, the Browns established the nonprofit Institute on Disability Culture, with a mission to promote pride in the history, activities and cultural identity of individuals with disabilities throughout the world.
“My disability showed up when I was 5 with an inexplicable limp. I ended up getting a biopsy at the Minnesota Mayo Clinic where they diagnosed Gaucher disease,” Steven Brown said.
He said that pain was part of the rare disease’s symptoms and was exacerbated by seasonal weather changes in Michigan, where lived. As he got older, the pain intensified, and the disease caused bone breaks, which limited his ability to stand and walk.
He said in his early life, he had an interest in research and teaching and looked for careers for someone who sat a lot.
Brown retired as professor and disability scholar from the University of Hawaii in 2014 and now lives with his wife, who remains president of the institute, in Surprise, Ariz.
He continues to write and speak about disability.
“As my disability has changed over the years, I have focused on alternative healing, which I explored in my book, Surprised to be Standing: A Spiritual Journey,” he said.
When he first became involved with disability rights in the early-1980s, he said he could find only two books on the subject, both were written by Frank Bowe, a deaf disability rights advocate.
Bowe, deaf at age 3 from measles, was known as the father of Section 504 of the Rehabilitation Act, which outlawed discrimination of people with disabilities and was the foundation for the Americans with Disabilities Act.
Although it was not coined by Bowe, the slogan “nothing about us without us” emphasized the idea that no policy should be decided without the full and direct participation of members of the group affected by that policy.
Steven Brown said he celebrated the 25th anniversary of the ADA, in 2015 by posting the top 25 disability pride books on his website, instituteondisabilityculture.org.
Today, he said, there are so many good books written by people with disabilities that it is hard to keep up.
Here are a few of his current picks: Sustaining Spirit: Self-Care for Social Justice, Naomi Ortiz; Fading Scars: My Queer Disability History, Corbett O’Toole; Black Disability Art History 101, Leroy F. Moore Jr.; and the just-released Haben: The Deafblind Woman Who Conquered Harvard Law, Haben Girma.
“When we understand our culture, we can explain our history, advocacy, talents and resources, and why there are many reasons for us to be proud of whom we are — both as individuals and as a group,” Brown said.
Andy Winnegar has spent his career in rehabilitation and is based in Santa Fe as a training associate for the Southwest ADA Center. He can be reached at firstname.lastname@example.org.