“Lives Worth Living”

Ed Roberts, disabilities rights activist and pioneer

“Lives Worth Living” is an amazing documentary that has needed to exist for many years. When most of us think about the progress in the 20th century of civil rights we think of race and gender, and now sexual orientation and gender identity. We still often fail to acknowledge the extraordinary movement for rights for people with disabilities.

The film begins with the story of Ed Roberts, who contracted polio at the age of fourteen in 1953. This was two years before the discovery of the Salk vaccine would begin to bring an end to outbreaks of this debilitating illness. Ed was nearly completely paralyzed from the neck down with the exception of two fingers and a couple of toes. He slept in an iron lung at night.

He initially attended school by phone until his mother Zona challenged this mediocre offering and fought for him to attend at least one day a week. He was almost prevented from graduating from high school because he had not completed the physical and drivers education requirements.

His mother took it all the way to the state department of education to get his diploma.

He was admitted to University of California Berkeley, where “one of the UC Berkeley deans famously commented, “We’ve tried cripples before and it didn’t work;” but other Berkeley administrators supported his admission and expressed the opinion that, “the University should be doing more.”” He was forced to reside in the school’s infirmary because of the size of his iron lung, but convinced the administration to treat it like a dormitory, and eventually other students with disabilities joined him.

“The group developed a sense of identity and elan and began to formulate a political analysis of disability, they began calling themselves the “Rolling Quads” to the surprise of some non-disabled observers who had never before heard a positive sense of disability identity expressed before. In 1968 when two of the Rolling Quads were threatened with eviction from the Cowell Residence Program by an authoritarian Rehabilitation Counselor, the Rolling Quads organized a successful ‘revolt’ that led to the counselor’s transfer.

Their success on campus inspired the group to begin advocating for curb cuts, opening access to the wider community; and to create the Physically Disabled Student’s Program (PDSP) – the first student led disability services program in the country. Ed Roberts flew 3000 miles from California to Washington DC with no respiratory support in order to attend a conference at the start-up of the federal TRIO program through which the PDSP later secured funding. The PDSP provided services including attendant referral and wheelchair repair to students at the University, but it was soon taking calls from people with disabilities with the same concerns who were not students.

He earned B.A. (1964) and M.A. (1966) degrees from UC Berkeley in Political Science. He became an official Ph.D. Candidate (C.Phil.) in political science at Berkeley in 1969, but did not complete his Ph.D.

…The need to serve the wider community led to the creation of the Berkeley Center for Independent Living (CIL), the first independent living service and advocacy program run by and for people with disabilities.

From the documentary, his mother explains that “independent meant that Ed would choose the people who worked for him. He would choose when to go to bed and when to get up, what to wear, what to eat, where to go. that’s being independent and that’s the opposite of being in an institution…It’s a powerful concept.”

“It’s an integrated future.” Living together in the community.

“…He was teaching political science at an “alternative college,” but returned to Berkeley to assume leadership of the fledgling organization. He guided the CIL’s rapid growth during a decisive time for the emerging disability rights movement. The CIL provided a model for a new kind of community organization designed to address the needs and concerns of people with a wide range of disabilities.”

From his obituary in the New York Times:
“The CIL, which furthered a nuts-and-bolts approach to solving the problems of people with disabilities, including help in modifying cars and vans to enable them to drive. A referral service was organized to develop a pool of reliable aides to help disabled people bathe, eat and dress.

The group campaigned to remove provisions of Federal laws that discouraged the disabled from working. He also led campaigns demanding access to public transportation and seating aboard buses and trains.

In 1975, Gov. Edmund G. Brown Jr. of California named Mr. Roberts to head the State Department of Rehabilitation. As director until 1983, he oversaw a staff of more than 2,500 employees and a budget of $140 million. The department now finances 28 state independent-living centers based on models that he developed.

Mr. Roberts helped found the World Institute on Disability in 1983. He traveled to Russia, Australia, Japan and France to raise public awareness on the philosophy of independent living for the disabled. In 1984 he received a MacArthur Foundation grant that he used to pay for his activities with the institute.

In a 1991 book “Rescues: The Lives of Heroes,” the author, Michael Lesy, said Mr. Roberts was one of nine people who defined heroism. Mr. Lesy wrote, “What a black man like Bob Moses had been in the civil rights movement or a woman like Betty Friedan had been for the feminists, Ed Roberts was for the disabled.”

Roberts died on March 14, 1995, at the age of 56.”

Zona Roberts speaks to the crowd in front of the building named for her son

In 2011 a multi-agency independent living center, known as the Ed Roberts Campus, had its grand opening.

And the World Institute on Disability (WID) continues on with its mission “in communities and nations worldwide to eliminate barriers to full social integration and increase employment, economic security and health care for persons with disabilities. WID creates innovative programs and tools; conducts research, public education, training and advocacy campaigns; and provides technical assistance.”

The most recent news on their website details the production of “the blueprint for a set of self-directed learning tools on employment and benefits to support planning and decision-making for veterans, family members, and the people who work with them. These products make possible the planned development of a web-based, real-time benefits information service, Veterans Benefits 101. Founder Ed Roberts will be inducted into the California Hall of Fame at a ceremony on December 8, 2011 and part of an exhibition at the California Museum in Sacramento from Dec. 9, 2011 through Oct. 31, 2012.

They’ve got several ongoing projects but one that caught my eye is:

Georgian Wheelchair Production Network

Funded by the U.S. Agency for International Development (USAID), WID’s International Program launched in 2009 a 3-year project in the Republic of Georgia. Working in partnership with Whirlwind Wheelchair International (WWI) and the Coalition for Independent Living in Georgia, along with their regional member organizations, the Association of Disabled Women and Mothers of Disabled Children in Zugdidi and the Association of Gori Disabled Club, the project is setting up a sustainable wheelchair production and repair facility in Tbilisi; a postural support seating and cushion service; networked wheelchair sales, distribution and repair businesses in Gori and Zugdidi; a mobility, self-care, and advocacy skills training system for

Wheelchair riders will be assessed, their final measurements recorded and wheelchairs will be made in order to fit the individual rider completely which is very important for wheelchair users.

men and women who use wheelchairs; and business and advocacy networks between disability communities in Georgia. The project will also conduct advocacy, public education, and community accessibility barrier removal activities in Tbilisi, Gori and Zugdidi. Most of the factory workers and advocacy team members are people with disabilities, and almost all are wheelchair users.

The factory will produce a minimum of 1,000 low-cost, high-quality Whirlwind RoughRider™ indoor-outdoor wheelchairs and, eventually, other assistive mobility devices for Georgian wheelchair users. The Association of Gori Disabled Club will make pressure relieving wheelchair cushions, and local professionals at the Children’s Center for Rehabilitation will be trained in adaptive seating and will fit and produce supported seating for children in wheelchairs.

The advocacy teams will conduct peer support groups, regional mobility and self-help skills camps for wheelchair users, and disability awareness and community access/barrier-removal trainings and roundtables to educate NGO staff, media professionals, teachers, government officials, lawyers, and architects about the need to improve community access; improve access to key public buildings by identifying and removing barriers; increase public awareness via organizing disability film exhibitions, media and poster competitions, and the production of a public education video to be shown at film exhibitions and on Georgian national television as well as a public service announcement for broadcast on local radio stations on community accessibility and a barrier-free environment; and host National Forums on Community Accessibility for government officials and lawmakers, professionals, media, and persons with mobility impairments and their families on issues and lessons learned in Georgia and to discuss strategies for implementation of legislation promoting a barrier free environment.”

Now that’s what I call a pretty damn good life!


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