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Ed Roberts: Godfather of Independent Living
Ed Roberts at protest. Man holding sign, "civil rights for disabled" in background
Photograph courtesy of Zona Roberts and Joan Leon
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"I decided to be an artichoke... a little prickly on the outside but with a big heart. You know, the vegetables of the world are uniting, and we're not going away!"
Visionary, advocate, organizer, stoner, father, prankster, lover, environmentalist, world-traveler -- Ed Roberts’ extraordinary life and career embodied the trajectory of the disability movement so brilliantly that he has been called the ‘father of independent living'. Some even say that the disability rights movement began on the day in the summer of 1962 when Ed first rolled onto the campus of the University of California at Berkeley.

Today, almost fifteen years since Ed left his body for the last time, I find it a little unsettling and strangely ironic to hear my old friend spoken of as if he were carved into the stone-face of some Mount Rushmore of the mind! Whatever else he was, Ed Roberts was constantly, irrepressibly and exuberantly irreverent.

We all have a need for heroes -- Ed, after all, was a hero of mine. And there is no denying that
he was present at the creation and did as much as anyone to shape and inspire the movement for rights, empowerment and independent living. But I always try to remember that Ed Roberts had at least as much Al Pacino in his make-up as George Washington. And I like to think of him as the disability movement’s first great spokesman, a spinner of tales that mixed fact with fable, and a truly gifted performance artist whose style can best be described as magical-realism and whose starring role was his own life-story.

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Ed survived the onset of polio at 14, and on the morning after the crisis when his fever had broken, he overheard his mother Zona tell a doctor that she was happy and relieved that her son was still alive and the doctor snapped back, “ How would you like to live your life in an iron lung?”

Ed battled through depression and despair to discover sources of healing - not cure – that carried him on for four decades in defiance of all the odds, assumptions and barriers stacked against him. Along the way he coined a slogan on behalf of his brothers and sisters who, like him, were most in danger of being written off - a slogan that captures the essence of '
disability cool'!

“The vegetables of the world are uniting and we’re not going away!”


And if you want to know what kind of vegetable?

I decided to be an artichoke”, said Brother Ed, “prickly on the outside but with a big heart!”
ED ROBERT"S BRILLIANT CAREER

In ’59 at the age of twenty he graduated from Burlingame High School over objections of administrators that failure to complete physical education and driver’s education requirements cheapened his diploma.

Over three years he earned an Associates Degree at the College of San Mateo giving up his
infeasible vocational objective of sports writer to focus on changing the world through government, politics and public policy.

In ’62 he was the first severely physically disabled student admitted to the University of California at Berkeley where he lived in a wing of the Campus Health Center breaking the ice for the men and women who launched the first wave of the Berkeley movement for empowerment and independent living.

overhead shot of Ed Roberts in tank with the photographer taking the picture.
Photograph courtesy of Zona Roberts and Joan Leon
By ‘69 the group were styling themselves the Rolling Quads, and when an authoritarian rehabilitation counselor tried to expel two of them, they staged a revolt and followed Ed’s lead in using the press to win the battle in the court of pubic opinion and the state capital in Sacramento.

In ‘70 Ed earned unofficial honors as
High Flying Transcontinental Frog Breathing Champion when he flew 3000 air miles from the Bay Area to Washington DC – with no mechanical respiratory support to advise on the distribution of anti-poverty funds used to create the Physically Disabled Students Program - forerunner to the Center for Independent Living.

In ‘72 he was one of a group who founded the Center for Independent Living Center, the first disabled people’s independent living service and advocacy organization in the nation.

In ‘73, after a stint teaching political science at Nairobi College, he returned to Berkley to lead the fledgling CIL from a duck tape and chewing gum operation to the ground breaking organization that changed national disability policy and elevated the aspirations and esteem of people with disabilities across the United States and internationally.

In ‘75 when Jerry Brown succeeded Ronald Reagan as Governor of California
Ed went to Sacramento to run the Department of Rehabilitation - the agency that had once tried to write him off too severely disabled to get a job - and to lead it into the new age of rights and empowerment.

In '83 when California again shifted hard to the right, Ed went back to Berkeley and founded the World Institute on Disability with Judy Heumann and Joan Leon, and he won a MacArthur ‘genius grant’ that gave his message and activism global reach until his sudden death in 1995.
ED'S DECLARATION OF INTERDEPENDENCE

I met Ed Roberts in the year of the bi-centennial. I had flown from Massachusetts to Berkeley with Noreen Hession who had started a non-profit with me that was evolving into the first Center for Independent Living outside an urban area. We were in Berkeley to check out the original, the Center for Independent Living that Ed had taken from a shoestring operation to the cutting edge of the disability movement. By '76 the CIL was four years old, had a staff of around two hundred and was bursting the seams of its 2nd home - an old car dealership on Telegraph Avenue a few blocks from the gates of the University of California. Ed had moved on to Sacramento. Jerry Brown had succeeded Ronald Reagan and 'Governor Moonbeam' -- as the former Attorney General was called by critics on the right -- had appointed Ed to direct the Department of Rehabilitation - the same agency that had once tried to write him off as too severely disabled to ever get a job.

Ed was back in Berkeley for a few days, staying at his mother Zona's house. On the day we met, Noreen and I had gone puttering up into the Berkeley hills in a golf cart loaned to us by one of our new friends at the CIL. We got lost and arrived too late to hear the speech Ed was giving in the ballroom of an grand old white wood-frame hotel. But we caught up with him afterward and while Noreen went off to find where food was being served, Ed and I settled in front of a stone fireplace to talk over the prospects for the movement in Massachusetts and compare notes on mind-expanding coming-of-age adventures in the 60s.

Was it a few years or only a few months later that I first heard and saw him work his magic on a room? Chronology has never been my strong suit and it is possible that more than one memory is merging here, but the way I recall that treasured memory was this: Ed had flown into Boston after a meeting in Washington with federal big-wigs and all the state directors of rehabilitation agencies. Russell O'Connell, a big fan of Ed's and our Commissioner of Rehabilitation threw a lunch so that Ed could fire up a gathering of ‘consumer leaders’ -- which was just about anyone with a disability involved in any way, shape or form with any of Massachusetts struggling network of CILs. One wag described the movement in Massachusetts back then as
“leadership in search of a constituency” , which I though was a pretty fair assessment. But the word was out that Ed was the real thing. I had done what I could to spread the word myself --though the details were a little fuzzy and would stay that way while the legend grew.

After lunch, as dishes of rubber chicken and limp pasta were being cleared away, Ed rolled toward the center of the room. A beanpole of a man with a goatee beard; he was dressed very hip, very California, in tan corduroys and a vest he might have bought from a street vendor on Telegraph Ave. He was riding the longest, most tricked out power wheelchair any of us had ever seen. Stretched out, a few degrees above horizontal he controlled it with little twists and tugs of two slim fingers on the control box. Maneuvering through tight spots with the skill of a long haul trucker he reached an open space in the center of the room. He swung his chair around, lowered the foot pedals, raised them again; then he raised the back of the chair till he was eye to eye with a hundred of us sitting at our semi-circle of tables. He looked around, making contact, he took his time, pulling us in till the walls of the room seemed to lean towards him.

When he settled back, his attendant brought a chair and sat beside him and held a microphone up. He spoke quietly at first then gaining strength. His voice was reedy, pitched in high mid-range, his words measured in a cadence punctuated by the whoosh of a portable respirator slung under his chair. He would pause, sealing his lips around the white plastic mouthpiece that hung from the side of his mouth like some kind of a space age musical instrument. The breath filled his face on one side giving him a look that was a cross between Dizzie Gillespie and a Hookah Smoking Caterpillar.

He invoked the Founding Fathers turning them topsy-turvy with a ‘
Declaration of Interdependence’. He talked about reciprocity, responsibility, relationship - the web of interdependence that creates and sustains community. Then, as he did what he did every time I heard him speak - he breathed life into his theme with a personal story.
He told us about a time when he had taken a risk and gone into a rehabilitation hospital. He though he might be able to learn to feed himself to give him a little more independence. It hadn’t work out the way he had hoped, but it had turned out OK. He had learned to spit olive pits, he said, which was good for his respiration. And he had met an occupational therapist there, and they had fallen in love, and gotten married, and had a baby - a boy they named Lee.
Ed Roberts looking back and smiling at young son, Lee.
Photograph courtesy of Zona Roberts and Joan Leon