Ed Roberts, Activist
Ed Roberts: A Remembrance and Leadership 'GPS'!
By William Bronston, M.D., January 16, 2011
The Phoenix
He comes back first in sound bytes, the rhythmic pop and shush of his positive pressure breathing system he clenched in his teeth, used constantly, over time, as breathing came harder; the motor-whirring acceleration of his "high quad" power wheelchair when in motion; and the sighing wheeze when he adjusted his chair back down or upright at the touch of his mobile left middle finger to the chair-arm mounted toggle switch. The pumping air surge of the yellow cast-iron lung in which Ed spent evenings at home and slept, was another unforgettable audio cadence of friendship.
Polio, in his teen age, savaged Ed's striated muscle system, the motor muscles that we consciously control to stand, walk, breath, use arms and hands, and left a gawky, strikingly handsome, massively paralyzed, soon to be recognized as a limitless, human being at the mercy of society's stereotypes, fears and the emerging and unpredictable liberating revolution in new transistor and digital technology.
Then, he lived in a world of mirth and moment-to-moment triumphs whose energy and magnetism constantly radiated like an electrical field around him. Ed Roberts was a miracle, in some cultures the stuff from which saints are enshrined. That he died in his iron lung one morning from heart failure is absolutely absurd. I'm sure none of his friends, the legions that knew him, really accept that fact but feel that he is certainly still alive, so powerful was his karma and the spell of perpetual goodness he exuded.
Ed came up in the irony of a time that made him feel progressively posthumous. And this disregard of who he was, as a fierce post-polio affected soul, resulted in his need for unconditional self affirmation of his vitality and identity – amplified times 1000 – through the advocacy of his mother, Zona Roberts.
Prior to Ed's generation, people stricken with the level of his disability were simply disappeared, despite maybe being held in the most cherished isolation by brilliant and passionate parenting, but nonetheless seen as partial persons, who had to be pitied, dismissed, and marginalized. Ed thoroughly changed this paradigm due to his leadership.
His insistence that he was whole by virtue of expecting to be schooled with the best, accorded a space in the world like others, compensated to equalize his basic access to societal resources was simply unreasonable and irresponsible, indicted as aspirations for bleeding heart charity on the part of any traditional agency administrator. Even the charter Federal human service Rehabilitation Act program – law and state departments – was originally established to ignore and make ineligible such compromised petitioners for services.
The New Director
When I first met him in 1975, after he had just been appointed by Governor Jerry Brown to be the Director of the California Department of Rehabilitation, Ed's steel was set by his continuous legendary and unprecedented dramas and struggles to demand civic and civil recognition. It was this one man who marshaled the confidence, insistence and guile to overcome the dehumanizing convictions about people with disabilities that were universal in America.
Suddenly, Ed was appointed to govern, to speak and act as a human rights commander, clearly intended by the new, young, California Governor, to invent a strategy, trumpet a value system, mobilize a massive cohort of the California, and thereby the American, public in excess of 40 million citizens, that would change the country and reverberate across the world. He was the harbinger, the right man, at the right time, in the right place, with the right intellect, personality, and image to transform everything that had to do with human "disability". It was by universal good luck, science and the body politic that made his ascent one of perfect timing and breathtaking success.
If Ed could not have been able to physically navigate outside a nursing home bed… if he could not have the portable electronic tools to perambulate, breathe, powerfully amplify his voice and telecommunicatively extend his speech anywhere, reach anywhere without normal extremities, antidote the specter of being some sort of freak… his brilliance and spirit would have been completely invisible and extinguished.
But genius human invention – digitalization, miniaturization, technological customization and infinite scientific optimism – had arrived. Had the civil rights movement of the 60s, women's rights, the anti Viet Nam war movement victory over practically every business-as-usual attitude prevailed, Ed would have been trapped in compliant traditions, rules and paralyzing expectations that would have made him a voice in the wilderness and irrelevant. How many genius human beings have lived anonymously, ignominiously in the wrong time and wrong place? Not Ed. Thank goodness for the world. Not Ed. Thank goodness for the world.
Then, there was Ed's spirit, his phenomenal sense of humor, his sunshine smile, his grace and ease, his imperviousness to being flustered, threatened, his intuitive diplomacy and the capacity to be one of the "good old boys" to any good old boy, young or old, plain or exalted. So shocking was the contradiction between his immobility and his personal power, people were swept away, helpless to use usual ways to subordinate, devalue, distance, and dehumanize him to avoid engagement.
Ed's buoyancy, his sweet good humor, his tangible love of others, his way of parrying insults, banality, contempt and opposition gave him an invulnerability like an X-Man or superhero. He knew this, used it constantly, and explained to everyone exactly how it worked out loud! He was a wizard that explained his magic tricks to his audience that only made his act more effective and remarkable.
Ed was the flash point of integrity and exuded societal respect for his peers with any disability which resulted in his profound embrace by all people with physical, sensory, mental, medical, social differences who experienced Ed as their undefeated champion. He was invincible with the Governor, the legislature, business and community leaders, professional field peers… he won over everyone to surrender the reflex of combat and feel they were in a win-win situation to expand the service consumer's franchise, in the most comprehensive ways.
His intention was to increase access and democratic participation of individuals with disabilities that everyone knew were, or had been, somehow "crippled" by human made barriers. What was so exciting was that his intuitive agenda to advance liberty, enfranchisement, and empowerment did not have the briefest hindrance during his watch.
The goals to achieve full integration, dissolve disabling prejudices, provide full physical and social access, and rocket social status enhancement were so concretely clear. His trumpet to correct epochal exclusions from all education, housing, transportation, income parity, all-around status enhancing image associations, had been accumulating in Ed's DNA. His interaction with the world, fertilized and sowed a generation dedicated to dramatic modernization and channeled through his peers who were struck by his courage to stand out.
The Program
The model and idea of Independent Living and a new peer power agency prototype, the Independent Living Centers that Ed pioneered in Berkeley, from which he built the movement base, was funded both through Federal and State statutory mandates and new dollars. These brilliant, all-around non-profit service organizations became the staging centers for tens of thousands of people to take their place in every corner of society with ingenious self help and peer supported assistance, tools and advocacy.
California was instantly divided among scores of ILCs and a whole new spectrum of expectations and realities. Like every political great leader, Ed attracted strength and capacity around himself. The best and brightest activists in the world of disability were drawn into a vast new convergent community. Every heretofore voluntary (charity) "defense" organization, comprised of people and families representing individuals with disabilities such as blind, deaf, developmental disabilities, cerebral palsy, learning disabled, genetically or medically involved, and on an on across the medical lexicon, were impelled to redefine themselves and their political mission.
This was no longer to be a panoramic constituency of those labeled with deficits but rather one whose leading edge spoke to the benefit to all mankind from the individualization of accommodation and integration that would emerge from full participation of its members in the economy and cultural life. It was the breakthrough insight that those who had been "the least" in the eyes of society, were to be the new pioneers for elevating the bar in all arenas of human excellence and value.
The first physical dynamic of his leadership was to grow and give definition to a modern human rights movement not to defend second-class tokenism and charity but to redefine the fruits of society for all, young and old. The task of bridging the century old archaic disability organizations, grouped by medical labels, was the greatest challenge.
The apex of this pilot effort came in 1980, the year before the United Nations International Year of Disabled Persons when Ed hosted a Governor's meeting of the balkanized leadership which was called "Consumer Unity" publishing a photographic anthology of inspired movement leadership visions that captured the great democratic possibilities inherent in the collective wisdom and practical aspirations of the disabled community at large.
The political prototype became a metronome beat for the unity message and strategic organizing work that continued on relentlessly with a blueprint. From this unity campaign the complex consequences of small disability group self interest, internecine competition for public and charity resources gave rise to exposing the callous hierarchy fought among those with disabilities, the disabled vets, the poor, middle class, racial and ethnic groupings. From atomized to the dialectical manifestation to a holy grail, Ed sought through a great united front of citizens with disabilities able to move and open the country through individualized services and entitlements to benefit all Americans.
The arduous task of galvanizing awareness, coalition, action imperatives, policy struggles, psychological and social emancipation from pervasive "less than" being and roles moved with explosive speed and force around California and around the nation given the altitude and podium afforded Ed Roberts as Department Director, as the ascendant living spokesman for all people with special needs.
Obvious and strategic alliances burst into existence with the organized senior sector whose members were moved, in late life, inexorably through the gauntlet of disability insults and dehumanized status, invariably trapping seniors in segregated, domestic refugee existences in a bureaucratically ruled, out-of-home, professionalized warehouses, to live and die as new multi billion dollar profit centers. The identity of interests against routine institutionalization and dehumanization could not be plainer.
The next alliance had to be struck with the organized working class communities and the trade union movement. Ed spoke to the essentially family centered body politic that attracted millions of members sensitive to the future of their children and need for system wide human services and accommodations. Building a profound identity with the civil rights movement across the spectrum of race, religion, gender, all seeking justice, fairness, and end to the humiliation and exploitation of prejudices was another political priority.
All these giant American minority cohorts shared a common "outsider"' status struggling to win and sustain a quality of life elevating political agenda. Ed's metaphor, peer driven independent living and full participation, as a legitimized capacity, spoke to everyone of new possibilities that crossed all societal boundaries.
He showed up and networked everywhere with his chair's sound byte accompaniment – pop, shush, zoom, wheeze – and his inspiring, metallic and jovial voice, timed between air puffs, which always just said – upwards and onwards, one way or the other. The litany of change he unleashed seemed logarithmic.
His bonds with the California State Architect's office, with its progressive newly appointed leadership, led to universal standards of physical access – wide and unimpeded doorways, bathrooms and universal wheelchair space. Street and business navigation with curb cuts, ramps and installed wherewithal for people's use of crosswalks, elevators, public utilities, telephone use burst into community after community with the new building codes as these were drastically changed through consumer advocacy. Everywhere people in motorized wheel chairs and all other enabling tools appeared in the open everywhere through astounding rehabilitation engineering solutions and altered attitudes that had shunned disability.
Paradigm Shifts
Ed and the heroic anti-Federal demonstrations stimulated the signing of the Federal 504 civil rights regulation rewrite that broke open a cross section barriers to normal social life and became a cause célèbre confronting the establishment to open society and honor all people equally. The strategic collaborations to effect health care reforms and expansions of insurance coverage, social security eligibility and benefits, and Medicare reforms accelerated. Ed especially targeted the entertainment industry – movie, TV, and stage – to open up to the use of talented artists with disabilities in front of and behind the lights, camera and microphones with his outreach to every member of the Producers, Director, Actors and Writers Guilds to examine their unconscious and stereotyped disability depictions and stigmatizing language.
A great culmination of this was tackling the federal Vocational Rehabilitation Act reauthorization of 1992. Through Ed's leadership, a call continued to be issued across the nation's grassroots to gather around the need to modernize and reform the arcane, first of its kind, legislation in America.
With the new political power growing among the disability community, the Rehabilitation Act was seen as a superb vehicle that had been heretofore dominated by a patronizing, medical professional tyranny to which people with disabilities had been relegated, subordinated to "fix". Like lightning, a Washington DC grass roots mobilization event proposed changes to the federal law that shifted the Act's most important features, service models and service processes towards the priorities of the people served and making the most profoundly, functionally impaired individuals, the priority beneficiaries of vocational rehab services.
The changes blasted through the Congress and the radically revised Act was signed into law. The radical transformation of the image of disability in America was linked to the radical expansion of the economic marketplace generated by the flood of new citizen participants and workers with "special needs" in the society. Products, services, barrier alterations, an inclusiveness everywhere in the real world, paradoxically changed the conversation and the rationale for expanding and advocating a fully accessible democracy.
"Career Development first instead of entry level jobs, personal empowerment to join and build community, youth as a priority, and life long sustainable technology and personal assistance" were key reform pillars. A campaign was launched to press for vocational partnerships with agencies serving people with developmental disabilities to advance age appropriate and normalizing services to adults who had been stigmatized as "eternal children" or worse.
This was certainly not Ed's singular invention, but his boundless energy and diplomatic sway accelerated the changes to their maximum extent and fabulous involvement of a new generation of activists and young leaders. One example was Ed's bold, innovative investment, with a million dollar contract, to bring psychologist Marc Gold, and his "Try Another Way" curriculum, to train a vast pyramid of California vocational workshop and school faculty to discard low expectations and categorical labeling of people with developmental disabilities.
With the Governor's blessing, the set-breaking, intimate pedagogy prioritized people thought to be utterly incapable of learning and impossible to teach, to master skills limited to the most capable workers. Gold introduced the most profound, individualized and meticulously task analyzed production strategies and training formats that put the onus of success or failure on the trainers rather than blaming the heretofore "untestable" clients for not learning. The entire "handicappis" placements imposed on all school children with special needs, and those in disability institutions, were exposed as scientifically and educationally bankrupt in the hands of truly competent human service workers.
Youth were his meat! Ed talked with kids everywhere he could to insure that old attitudes of hopelessness, dependency, deviancy, treatment and professional subordination would be exploded. Starting in 1981, The United Nations International Year of Disabled Persons, Ed put his office behind "Project Interdependence"(PI), a highly unorthodox teen youth organizing strategy with a celebrity Board, that established week long, wilderness based and life changing training extravaganzas, hosting 100 youth with and without disabilities at a time to learn to become role models to change society with their bonds of friendship, new awareness and commitment to breakthrough career explorations in the sciences, arts, sports, recreation growth industries of California.
With the partnership of the California Department of Education, the PI team in the Department of Rehabilitation selected 2 dozen high school districts scattered from the Oregon to Mexican borders who sent delegation after delegation of kids to experience the magical 7-day and night epiphany driving sessions to then return and share their personal breakthroughs and organizing skills among their schools and districts. Ed electrified each session with his presence and passionate message of "be somebody extraordinary" to the youth participants. Media documentaries and every manner of visual capture multiplied the beauty and moving drama of the campaign that led, 20 years later, to the creation of the statutory based Digital Arts Studio Partnership and Tower of Youth programs in California.
Global Avatar
The trajectory of these developments drew Ed into the international community with a vengeance. First, he was a barrier breaker by avocation. His war with the airline industry to make travel work for people regardless of their mobility or other accommodation and safety concerns is legendary. Secondly, the burden of seeing the majority of the world, Africa, Asia, Latin America, the Caribbean and Pacific Rim world struggling with almost stone age poverty, residuals of malnutrition, underdevelopment war, violence and disease all manufacturing disability in boggling numbers demanded relentless address. Inventing unbreakable and cheap equipment, vaccines, barrier removal was a millenniums' work.
Finally, the industrial world's disabled communities were themselves in motion towards the new integration and empowerment sweeping the world. Ed's power chair was his war-horse and chariot to him to convey him to and for the change. His unique role was to catalyze international leadership to join forces, frame their emancipating and inspiring stories and visions, author political campaigns to move their governments and social institutions to become open, that led him to Australia, Russia, China, Europe, Japan, everywhere and anywhere he could connect with partisans with whom he established instantaneous and unbreakable bonds of friendship and exchange.
Legacies…
Ed was a lover through and through. Polio knocked out his voluntary musculature not his reproductive physiology! Surprise! He married a tall, knock out remarkable woman occupational therapist, Kathy, had a vivacious and rambunctious son, Lee, who became a regular passenger on Ed's monster chair and in his 30 years has become a young prince in his work life whose persona and spirit are plainly a "chip of the old block".
Ed's life had been in his mother's Berkeley home till he moved to Sacramento in 1975 where he owned a home in which he and Kathy lived until he moved back to the East Bay after the Jerry Brown eight year Administration ended. Throughout, his dependence on 24 hour in-home support services from a small army of paid aides created a parallel social milieu around himself where his life existed in some harmony with the workers that mediated the physical, hygiene and mealtime demands of everyday living.
The hope of an eternally operational, battery driven positive pressure breathing machine to force air into his chest to passively expand his lungs to breath mounted on his warhorse wheelchair never quite worked in the ideal given the battery and punishment he meted out on getting around daily. The machines were stressed to the max as he gave no quarter to machine or his personnel accompaniment in propelling his public vision and appetites.
At the end the Brown Administration and Ed's eight year stint in state office the question of how to institutionalize and continue the historic work, to fuel and permanently carry the major human rights and programmatic work on was paramount. In the period of less than a decade, the work and heroism of thousands changed the California, American and world landscape with regard to full access and universal integration.
Change was not downhill, it was always uphill with reaction, ignorance, fear, opportunism, cultural stereotypes deeply embedded everywhere. Civil victories had to be guarded and expanded, service and system breakthroughs and development continued to be urgently needed and reaction, always a threat to the very lives of people who were perceived as very different and devalued because of it scrupulously opposed.
The example of Nazi Germany's "final solution" begun with people with developmental disabilities being exterminated first was an indelible century marker whose contemporary counterpart, institutionalization and segregation, de-funding community independent living supports and lack of rightful health care entitlements were a perpetual danger demanded an organized force equal to the situations. It is to this end that his World Institute on Disability was founded and has grown to its present state.
The terrestrial manifestation of Ed Roberts seems to have come and gone. It is the infinite expression of his spirit however, the stories and examples lovingly collected here in this virtual memory sanctuary, that offers some of his recipes for us to keep human being at its highest and best adventure.