“Independent Living isn’t doing everything by yourself—it’s being in control of how things are done.”
—Independent living pioneer Judy Heumann, quoted by Ken Stein in text accompanying Stein’s photo exhibit of CIL’s history in Rasputin’s windows at 2401 Telegraph Ave.

Today it sounds like something from ancient history: a physically disabled person earning a university degree is relegated to living in a hospital.

But that’s what happened in 1962 to Ed Roberts, who was severely disabled from polio with virtually no functional movement and dependent on a respirator to breathe.

Known as the father of the disability rights movement, Roberts, one of the founders of Berkeley’s Center for Independent Living (CIL), “was the first severely disabled person admitted to the university,” Gerald Baptiste, CIL deputy director told the Daily Planet in an interview in the center’s offices on Telegraph Avenue on the occasion of the center’s 35th anniversary.

On Oct. 11, CIL will celebrate with an event at the downtown Oakland Rotunda Building, 300 Frank Ogawa Plaza, which includes a silent auction, dinner, dancing and entertainment. Tickets are $150 and available by calling 841-4776. Judy Heumann, a CIL co-founder and now director for the Department of Disability Services for the District of Columbia, will be honorary chair.

Roberts, who would become the first disabled head of the California Department of Rehabilitation, was housed in a wing at Cowell Hospital because there was no accessible dormitory, Baptiste said.

As the university accepted other severely disabled students, it housed them together at the hospital. While the students found this arrangement restricting, grouping the disabled together created the critical mass they needed to brainstorm about the conditions they would need in order to take control of their own lives and to help other disabled people to do the same.

The Physically Disabled Students’ Program came out of these discussions.

As they graduated, the former students faced new challenges. “As people came through the university and came out, they found they did not have the supportive services they needed to work in the community, live in the community and stay out of institutions,” Baptiste said.

And so the first Center for Independent Living was born in 1972, headquartered in a two-bedroom apartment near campus. In 1975, CIL moved into its current 2539 Telegraph Ave. headquarters.

Created by and for disabled people, the new agency was unique: “Being people with disabilities, they knew the type of services needed to make [the agency] happen,” Baptiste said.

CIL was founded to resolve the everyday problems facing the disabled community: finding accessible, affordable housing, vocational training and attendant services were among them. The agency also took on the task of educating the community about disabilities.

And CIL founders had a vision for systemic change, working on policy issues to guarantee the rights of disabled people.

Baptiste said there was a reason that the independent living movement began in the Bay Area, which was the home of the free speech and anti-war movements and the Black Panther Party.

Bay Area people “immediately supported the idea of independence for people with disabilities,” he said.

Baptiste, who lost most of his vision at age 29, went to work at CIL in 1979. Hired by Michael Winter, now director for the Office of Civil Rights in the Federal Transit Administration, Baptiste had planned to work in CIL’s blind services for a short time, then move on. He’s been there 27 years and deputy director since 1985.

When Baptiste came to CIL, it was fiscally stronger than it has ever been, with a budget of $3.2 million per year and a staff of 200. But funding was severely cut back in the early 1980s, and the agency radically downscaled to 28 employees. The agency was able to adapt to the changing times and helped birth independent sister agencies such as BORP, Bay Area Outreach and Recreation Programs, and DREDF, the Disability Rights Education and Defense Fund.

While those who founded CIL worked tirelessly behind the scenes in education and policy, they also made themselves highly visible in struggles for the civil rights of disabled people.

One was the fight for “504,” Section 504 of the 1973 Rehabilitation Act that protected people from discrimination in federally funded organizations and programs.

Passage of the legislation was not enough—it had to be implemented.

That took the militancy of Judy Heumann, Ed Roberts and hundreds of other disabled activists and their supporters who sat in, in federal buildings across the country. “On April 5, 1977, everybody agreed to move into the federal buildings and not come out until the implementation of 504,” Baptiste said.

In the San Francisco offices of the Federal Department of Health, Education and Welfare, some 150 people camped out for 26 days as hundreds of others marched outside United Nations Plaza.

The action resulted in the signing of regulations implementing Section 504, the precursor to the 1990 Americans with Disabilities Act.

Among the more visible local impacts of 504 was Berkeley’s curb cut program, the first of such programs in the nation.

Today the face of CIL has changed. It has a modest 54 employees, housed in four different offices: downtown Oakland, Fruitvale and East Oakland, in addition to the one on Telegraph.

“We do that to make sure that we not only have outreach in those communities, but a presence in those communities,” says Baptiste. An African American, Baptiste said one of CIL’s founding strengths that continues today is its outreach to minority and underserved communities.

“CIL, as an independent living center, leads all independent living centers in California in our outreach as well as diversity in our staff,” Baptiste said.

There is a stark divide between the more wealthy white and low-income minority communities in their knowledge of available services and how to access them, Baptiste said.

Those who are aware of how to access services are more able to move on with their lives and adjust to the disability, Baptiste said.

For a person unaware that there is help, especially one who becomes disabled late in life, “the only thing that they know or feel is that it is almost the end of life for them … They’ve lost their self-confidence and their self-esteem. They’re just existing,” Baptiste said.

Different times bring different needs. Today Baptiste is working on programs for the young “macho” people who have been shot and are disabled. “They need to get started in the right direction,” Baptiste said, noting that many come from families that have little knowledge of disability and advocacy.

Employer education and vocational education are key, Baptiste said, pointing to statistics that show that only a small percentage of the disabled population is employed.

Given training and opportunities, people can “succeed or fail according to their own abilities,” Baptiste said. “I think everyone deserves that right regardless of their economic standard or their race. And I feel like we have an obligation to reach out and make sure that happens.”

The healthcare divide between the wealthy and the poor has ramifications in the disabled community, Baptiste said, noting poverty can lead to poor healthcare, which can result in disability.

In some instances, what could become a severe disability may be prevented or mitigated if caught early, he said, pointing to the example of the Buffalo Bills’ tight end Kevin Everett, who received severe spinal injuries in a Sept. 9 game and got immediate extraordinary medical care that may allow him to walk again.

Still going strong, CIL has an annual budget of $2.1 million and provides some 68,000 informational referrals annually. Yet, “It’s still grassroots,” Baptiste said.

“We often have more consumers than staff hours to work with them,” Baptiste said, noting that the staff has a passion for what they do and work at low pay and long hours.

There are plans for big changes in the future: moving the CIL headquarters from Telegraph to a new office complex, to be called the Ed Roberts Campus, on the eastern parking lot of the Ashby BART station.

CIL Director Jan Garrett told the Daily Planet that it looks like funding for the project is complete. The campus will house a host of services for disabled people in one place including a center for technology, legal services and more.

“Many people can benefit from the wide variety of services that will be there—a one-stop center for services,” said Garrett, a quadriplegic who practiced law before taking over the direction of CIL eight years ago.

The Ed Roberts Campus is to be truly accessible, a standard now known as “universal,” with large elevators, wide doorways, completely accessible restrooms and audible directions for people with visual impairments, Garrett said.

What motivates Baptiste, now 73, has not changed over the years. “My enjoyment comes from doing the outreach and finding and assisting people,” he said, and supporting them as they stand up and say, “I do have a right.”

By Judith Scherr, Berkeley Daily Planet
September 2007