Mark O'Brien

Born: July 31, 1949
Died: July 4, 1999

Major Contribution:

Mark O’Brien was a journalist, poet and advocate for people with disabilities. A quadriplegic from polio in 1955, he was dependent on mechanical ventilation using the iron lung much of the time but he also used a chest cuirass. He was cared for by personal attendants that he hired and could fire. He was an ardent opponent of euthanasia and emphasized the universal need for human beings to have a measure of control over their own lives. In The Disability Rights Movement, from Charity to Confrontation by Doris Zames Fleischer and Frieda Zames, O’Brien is quoted as protesting mercy death, “We are not contagious or dangerous. And we aren’t affiliated with any political party…I’m not suffering, terminal, or even ill. Don’t waste your pity on me. I want to live.”

And, live he did. His was featured in Breathing Lessons: The Life and Work of Mark O’Brien, directed by Jessica Yu, which won an Academy Award in 1997. It was based on Breathing, one of his volumes of poetry.

Based on his essay, "On Seeing a Sex Surrogate," which appeared in the Sun magazine in 1990, The Sessions won the audience award at the Sundance Film Festival in 2012. The O’Brien role was played by John Hawkes and the surrogate was portrayed by Helen Hunt.

Other Information:

Brief Biography: Mark O’Brien was born in Boston and raised in Sacramento, California. At age 6, polio left him paralyzed from the neck down causing him to use an iron lung. He had very limited movement being described as having the use of one muscle in his right foot, one muscle in his neck and one in his jaw. He was 4 feet 7 and 60 pounds.

When he began his journalistic career, he initially dictated his articles, but learned to use a “mouth stick” to press the keys of an IBM Selectric typewriter and, finally, a word processor.

His parents educated him at home the first twenty years of his life and then transferred him to a nursing home. He moved out on his own at age 30. In 1982 he earned a bachelor’s degree in English at University of California, Berkeley. He repeatedly applied to the Graduate School of Journalism until he was admitted. His acceptance set a precedent that helped other severely disabled applicants attend state universities.

With the help of an attendant, he could get out of his iron lung and onto an electric gurney. He soon became a familiar sight on Berkeley streets.

O'Brien was the author of several volumes of poetry (including Breathing) and an autobiography entitled, How I Became a Human Being: A Disabled Man’s Quest for Independence.

As a long-time editor of Pacific News Service, O'Brien published essays, book reviews and news stories for the San Francisco Chronicle, the Examiner, and the National Catholic Reporter. He wrote about sports, religion and the culture and politics of being disabled. He was also a contributor to NPR.

He co-founded a small publishing house, Lemonade Factory, dedicated to poetry written by people with disabilities.

He met his life’s partner, Susan Fernback, in the last five years of his life. In an interview she recalled how Mark was able to “transcend his circumstances and live in the best way possible.”

“He built important connections within the disability community based on the ‘social model’ of disability as a rights movement rather than the ‘medical model’ which defines a person only as a set of deficits or conditions. His disabled friends were very important to his self-image and in reducing his sense of isolation.”

He died at age 49 as a result of complications from bronchitis.

Published Works: They include Breathing, Love and Baseball, How I Became a Human Being: A Disabled Man’s Quest for Independence and "On Seeing a Sex Surrogate."

Location of Papers:
Mark O'Brien Papers, 1968-1999
The Bancroft Library
University of California
Berkeley, CA 94720-6000
510-642-6481

May 2015/Carol K. Elliott/Joan L. Headley