I'm on a mission in Berkeley. The assignment sounds simple enough: find a good story about the disability movement in the place that gave birth to it 30 years ago.

So I'm buzzing around, talking to lots of lifelong advocates in this college town that spawned so many radical activists the media used to call it "The People's Republic of Berkeley." Those days, residents admit, are long gone. Like its neighbors throughout the Bay Area, Berkeley suffers from one of the tightest housing markets in the country, an unsettling influx of dot-com millionaires and a general queasiness about multinational mergers displacing Mom and Pop shops by the dozen. The culture is changing, and even in Berkeley--home to more disability organizations per capita than anywhere else in the world--the future of grass-roots advocacy is unsure.

Ed Roberts, ìfatherî of the independent living movement

It's not that there's a lapse of vision or commitment or hope. It's that there's a collective pause that advocates describe as they look up from their trenches. They're looking up to see where the others are digging, to see if they're cutting each other off, to see if all these paths are in fact going to meet in a better world for people with disabilities.

"In the '70s, all the disability groups were together under one roof at the Center for Independent Living," explains Rick Spittler, 47, a longtime Berkeley advocate and currently the executive director of the Bay Area Outreach and Recreation Program. "Most broke off and developed into their own organizations, starting in the late '70s. For all the '80s and the first half of the '90s, everybody was busy developing their own part of the independent living movement and there wasn't a lot of collaboration between groups. Then people started to ask, 'Is this really working as well as it can? Are we getting where we want to go with the movement?'"

"Every one of these topics"--housing, employment, attendant services-- "is the side of a Rubik's cube." --Mary Lou Breslin

The answer was no--there was too much fragmentation. And ironically, Spittler says, it took the death of the man credited with starting the movement, Ed Roberts, to bring some Berkeley organizations back together. After Roberts died in 1995, the city wanted to create a monument to his work and sent an all-points bulletin to the disability community. Many groups attended the initial meetings to come up with a fitting memorial, but over the next several months those committed to the project boiled down to nine nonprofits working in law, policy, technology, recreation and parenting.

The resulting plan is nothing less than the Ed Roberts Campus, a $30 million universally designed structure that will house the nine partner organizations plus several shared spaces such as a disability library, teleconferencing facility, sports complex and media center.

This story is about why such a place holds so much promise for the future of independent living.

The Policy Puzzle

Understanding the potential of the campus means understanding the struggle of policy reform. I have to admit that my own understanding is limited by intolerance for the arcane, but it is nonetheless with an open mind that I set out to meet some of Berkeley's top policy wonks.

Jan Garrett, director of Berkeley CIL

The first is lawyer Mary Lou Breslin, president of the board of the Disability Rights Education and Defense Fund. Articulate and intellectually precise, Breslin speaks like an expert witness in The People v. Government Obduracy.

It is incredibly complex, she says, sliding her power chair under DREDF's conference table, to change disability policy in a way that tweaks all its facets to create a cohesive new whole. When different groups are working on different issues--housing, employment, attendant services--or even operating from different angles on the same issue, sometimes the communication needed to change the big picture isn't there. "Every one of these topics is the side of a Rubik's cube," she says. To solve the puzzle, you have to be aware of how each change affects another side.

This is an idea I can get my mind around, but I want to know if others see the problem in the same light. So I drive to Telegraph Avenue, famous for its erstwhile hippie landmarks, to the Center for Independent Living to meet executive director Jan Garrett, a lawyer and quadruple amputee who took the helm at CIL four months ago.

She closes her office door with her mouth--it seems like all the doors in Berkeley come equipped with rope handles--and offers a perfect example of the Rubik's cube problem: the recently passed Work Incentives Improvement Act. The Act removes one major disincentive to working--the loss of government health benefits when you start earning a little money--but fails to address other government-subsidized programs with income restrictions, such as Section 8 housing or county-run attendant services. "If you're no longer eligible for low-income housing," Garrett asks, "where do you live if you still don't have enough money to pay full-price rent?"

Because this conundrum wasn't addressed in the language of the WIIA, Garrett and others will have to try to deal with it as they implement the law at the state level. "A law comes down and they don't really think about how it's going to impact other areas," she says. "'Oh, you say work is a problem, people want to work? OK! Let 'em work!' But they're going to lose their house and the services that allow them to get up in the morning."

Disability Rights Education and Defense Fund DREDF is a national law and policy center dedicated to furthering the civil rights of people with disabilities. The organization has worked on every piece of major disability rights legislation in the last 20 years, as well as most disability rights cases appearing before the U.S. Supreme Court. The services offered by DREDF are geared toward two groups--individuals with disabilities and parents of disabled children. Individual services include an ADA hotline, training on the ADA and other disability rights laws, and the Disability Fair Housing Testing and Enforcement Project. DREDF's Family Advocacy Program trains parents on their disabled children's rights to an equal education, works to improve educational services for youth with disabilities, and conducts research into how to ease the transition from secondary school to college or work for disabled young people. DREDF, 2212 Sixth St., Berkeley, CA 94710; 510/644-2555; dredf@dredf.org; www.dredf.org ADA Hotline, 800/466-4232

Together We Fight ...

This is where it gets wonky. "You really have to look at each issue from different angles," says Breslin, citing an irony of California's much-touted In-Home Support Services. IHSS was and is a triumph on the personal attendant services front, yet it remains meaningless to people who'd like to move out of nursing homes but can't find affordable, accessible housing. This, Breslin says, is due in large part to the "dismal failure" of the Fair Housing Act, a law intended to create an ever-growing accessible housing stock so that accessibility issues would diminish over time.

The problem? It's a federal law without a provision for enforcement at the state level; without an inspection mechanism, inaccessible design continues to dominate new housing.

"If the Fair Housing Act were working properly and if locales had accessibility and money," Breslin says, "they could offer low-income people access when they need it. If the dollars flowed with the person when they left a nursing home and there was a higher level of rent subsidy, we could undo a lot of the costly institutionalization that we've seen. Each one of those are big policy chunks that need to be figured out and put together in a calculus that can be sold."

Is it possible that the Ed Roberts Campus could help solve this kind of policy puzzle? Although each participating group is quick to assert its autonomy, there is clearly hope for closer working relations, especially at Through the Looking Glass, my next stop on the Berkeley tour.

"I would hope that we will have a lot more clout--not going every which way but being more unified politically," says Megan Kirshbaum, the parenting organization's executive director. "I also think there is great creative potential in working together on different projects. There has been a lack of awareness, even of what one another are doing, because we've been so insular in a lot of ways."

Not five minutes later, we stumble on one of those ways. Kirshbaum, softspoken and one of the few nonlawyers leading the movement, is describing the many levels on which state agencies have discriminated against her clients. I ask if she's part of the team of DREDF-led advocates contributing research to a Supreme Court amicus brief on that very subject. It's an attempt to defend the constitutionality of the ADA's Title II by documenting such invidious discrimination by the states that the federal government must intervene. She looks a little uncomfortable, and says no one has spoken to her about the brief. "I have a lot I could contribute to that," she says.

A Legacy to Youth

The Ed Roberts Campus Estimated cost: $30 million. Current plans call for $10 million to be raised from foundations, $10 million from the federal government, $10 million from bank loans. Already raised: $600,000; capital campaign kicks off this summer Owners: City of Berkeley and the Bay Area Rapid Transit Authority Size: two to four stories, possibly as large as 150,000 square feet Location: Ashby BART Station Estimated date of groundbreaking: Autumn 2001 Possible facilities: library, computer resource center, presentation space, multimedia center, teleconferencing facilities, machine shop, sports complex, theater, cafe and restaurant, outdoor recreation area, child care center, child development observation room, meeting and conference rooms, retail space Partners to be housed: Center for Independent Living, Disability Rights Education and Defense Fund, Through the Looking Glass, Disability Rights Advocates, Computer Technologies Program, Whirlwind Wheelchair International, Center for Accessible Technology (see sidebars); World Institute on Disability (see article, page 44); Bay Area Outreach and Recreation Program (see article, page 48)

If the Ed Roberts Campus offers a promise of greater communication and collaboration, it holds other possibilities as well.

Phillip Martin Chavez, who says he's worked at the Berkeley CIL longer than any independent living worker at any center anywhere in the country, has been in the movement for 23 years, exactly half his life. At this moment Chavez, a C4-5 quad, is facing his own housing crisis because his landlord has decided to sell the house he rents to take advantage of the city's inflated property values. He sounds a little weary, and who can blame him? He was there when Berkeley--now considered the most disability-friendly city in the world--had exactly eight curbcuts. Nothing has come easily, and he still can't relax and just live his life.

That might be different, he says, if he and other advocates had planned for the future. "If there was one single greatest mistake made throughout the process of the movement, it's that the old guard didn't teach each new generation, we didn't foster new leaders, we didn't continually reeducate. We could be a lot further along on a number of levels if we had had that foresight."

Garrett, 38, agrees. "Disability leaders who began the movement or who were early leaders are getting to the age where they are retiring or dying," she says. "And there is not enough emphasis on bringing in people to shadow them, to intern, to learn their pearls of wisdom so that the movement can be carried on in the same way."

Might the Ed Roberts Campus attract young advocates to the movement? With its elegant design and state-of-the-art technology, there's no doubt that it will appeal to a new generation more than the humble digs of Berkeley past. Its location at a Bay Area Rapid Transit station also guarantees greater access for students--and everyone else--without private transportation. And the very fact that the project puts nine organizations in the same setting offers a chance for young advocates to more easily find their place in the movement and see how that place relates to other efforts. "I think the Ed Roberts Campus," Kirshbaum says, "will allow us to train young people in a much more integrated way."

"There has been a lack of awareness, even of what one another are doing, because we've been so insular in a lot of ways." --Megan Kirshbaum

Or vice versa, says lawyer Deborah Kaplan, a quadriplegic and the executive director of the World Institute on Disability. "We're now becoming more entrenched and really part of the establishment," she notes. "I hope something else will come along that's younger and fresher, and challenge us as well. We need that."

Follow the money--that's what they always tell you when you want to truly understand something, right? In disability nonprofits, following the money is usually a pretty short trip. There's not a lot of it and plenty of groups vying for what there is.

"Because of the fragmentation," Chavez says, "the left hand doesn't know what the right hand's doing. And we've been that way for a long time, often even competing for the same grant money. It's become competitive within our own field, which is not good for anybody at this point."

"If there was one single greatest mistake made throughout the process of the movement, it's that the old guard didn't foster new leaders." --Phillip Martin Chavez

Garrett says that, again, the new campus could help. "We might talk to each other more, we might go for funding together instead of competing for funding."

Not only is there likely to be less competition for cash, but the combined clout of the organizations could command a new level of investment. Spittler, who served as the campus project manager for three years, says he was amazed at the respect he received.

"When I was working as project manager I got access to places that if I introduced myself as Rick Spittler, director of BORP, went nowhere. But introducing myself as Rick Spittler, project manager of the Ed Roberts Campus, a partnership of nine organizations, got doors opened. Funding doors, political doors, whatever. You just have so much more power as a group.

In disability nonprofits, following the money is usually a pretty short trip. There's not a lot of it and plenty of groups vying for what there is.

"No one of these organizations could have pulled this off on their own," he adds. "The city would have said, 'You're crazy.' Same with the transit authority, BART. We wouldn't have had the power to negotiate this incredibly good deal with BART unless we were a partnership. And I do think it can be a model for what can happen in other places."

So what will be the ultimate achievement of this ambitious project, this $30 million campus devoted to Berkeley's heretofore grass-roots disability movement? Will a younger generation carry the torch, will the money flow without waste to synchronous organizations, will the policy puzzle be solved?

Deborah Kaplan, director of WID

"I don't know," admits Kaplan. "The cynic in me says, 'Are you joking?' There's something in human nature and public policy that makes me guess probably not. It's very, very complex, and something that happens on one side of the Rubik's cube can have unanticipated repercussions somewhere else. I don't know that there's a perfect understanding even of what all the issues are that would enable us to ever reach such a state.

"Instead, I see it as something that's ever-changing that we're constantly trying to keep in balance. Where progress is made, we get better at what we're doing and because of that, new needs get created as well. But just because we don't reach a state of perfection doesn't mean things don't get better."

With all this intellectual juice in one place--and 20-plus years of experience to the power of nine--things can't help but get better. And if this model is replicated in key cities throughout the country, who knows what's possible? As Ed Roberts once said, "My job is to inspire people, to get them thinking about what really could happen if they were empowered." With the Ed Roberts Campus on the horizon, people are thinking.

Center for Independent Living As the model for hundreds of independent living centers nationwide, the CIL in Berkeley has stayed close to its roots. Founded in 1972, its origins actually go back 10 years earlier, to the year Ed Roberts was admitted to UC Berkeley as its first student with a severe disability. Today the CIL's offices are just across the street from the university. The philosophy of the CIL is based on principles Roberts and several other disabled students drew up in 1969: Those who know best the needs of disabled people and how to meet those needs are disabled people themselves. The needs of the disabled can be met most effectively by comprehensive programs that provide a variety of services. Disabled people should be integrated as fully as possible into their community. Services offered by the CIL today include attendant referral, housing search services, employment services, services for people with visual and hearing impairments, information and referral, independent living skills training, youth services, advocacy and peer support. The CIL also offers programs for people with mental disabilities and tailors all of its services to assist Berkeley's homeless population. Berkeley CIL, 2539 Telegraph Avenue, Berkeley, CA 94704; 510/841-4776; webmaster@cilberkeley.org; www.cilberkeley.org

Through the Looking Glass The impact of the independent living movement extends beyond the lives of adults with disabilities. It has also affected disabled children and their parents, who must often advocate for their children's rights and raise them to adulthood in a society that still tends to think institutionalization is the best thing for them. Through the Looking Glass was formed in 1982 with those children in mind. It offers a variety of resources and services to families in which one or more members--either children or parents--has a disability. Its focus is on encouraging independence, rather than on medical-model services that promote isolation and dependency. TLG's services include the National Resource Center for Parents with Disabilities, which provides information, referral, technical assistance, a number of articles and books on disability and parenting, training for professionals, and a nationwide parent-to-parent support network. TLG has also conducted research projects on issues such as pregnancy/birthing, assistive parent technology and adoption. TLG, 2198 Sixth St. #100, Berkeley, CA 94710-2204; 800/644-2666 or 510/848-1112; TLG@lookingglass.org; www.lookingglass.org

Whirlwind Wheelchair International The sketchbooks are incredible. Well-thumbed and stained with the dirt of 25 countries, they hold hundreds of designs born from the collaboration of Whirlwind Wheelchair International and wheelchair builders in the farthest corners of third-world nations. The wheelchairs are also incredible: rugged, lightweight, all-terrain and easily maintained with cheap, locally available parts. They cost $100 to $300. Started by Ralf Hotchkiss and Peter Pfaelzer in 1989, WWI operates with the belief that their global network of builders can meet the worldís need for 20 million chairs by the year 2020. To date, more than 200 mechanics have been trained and 10,000 chairs produced. An offshoot of the program is Whirlwind Women, which encourages women to take an active role in their own mobility and help design chairs that meet their specific needs, such as transporting children. WWI, School of Engineering, San Francisco State University, 1600 Holloway Ave., San Francisco, CA 94132; 415/338-6277; whirlwind@sfsu.edu

The Center for Accessible Technology According to its founders, people who come to the Center for Accessible Technology want "answers, support, action, change, knowledge, help, hope, a job, to save time, help others, save money, succeed, make connections and do what others do." No small task. But CforAT aims to deliver the resources for people to participate fully in work, school and the community. Started in 1983 as the Disabled Children's Computer Group, CforAT has grown to become an all-ages center to help people with disabilities, their families, teachers, counselors and employers to explore computer systems, adaptive devices and software. To this end, they offer demonstrations, classes, events, play groups, technical support and a useful Web site with several comparative articles such as "NaturallySpeaking vs. Via Voice Gold" and "Internet Surfing with SurfTalk and VoiceType Connection." Center for Accessible Technology, 2547 8th St. #12A, Berkeley, CA 94710; 510/841-3224; info@cforat.org; www.el.net/CAT/

Computer Technologies Program Computer Technologies Program is one of the most successful job training organizations in the country. Funded largely by the California Department of Rehabilitation and advised by businesspeople from more than 60 Bay Area companies, its graduates routinely land jobs starting at $40,000. Jean Nandi, who has muscular dystrophy, graduated from CTP and took a good programming job with Wells Fargo Bank. Because of the progression of her MD, Nandi couldn't stay with Wells Fargo, but she stayed with computers. Today, flat on her back in bed, she runs a number of Internet-based organizations that include the California Disability Alliance, a group linking organizations statewide to lobby more effectively on disability issues. Although the focus of CTP remains on job placement, Nandi's story shows its potential for furthering the disability movement. "When we would hold a meeting for Access BART," she says, "it would cost us $500 for interpreters and computers for assistive transcription. We couldn't afford it and had to stop holding meetings. Then we had a listserv instead, and that worked much better. You don't have to leave anyone out because of their disability." Computer Technologies Program, 1918 Oxford St., Berkeley, CA 94704; 510/849-2911; info@ctpberk.org; www.ctpberk.org California Disability Alliance, jeannandi@aol.com; www.dredf.org/cda/cdahome.html

Disability Rights Advocates "We cannot afford to be apologetic or embarrassed about asserting our rights," says Larry Paradis, executive director of Disability Rights Advocates. That attitude serves DRA well as it uses "vigorous advocacy" to protect gains under the Americans with Disabilities Act and enforce civil rights in the trenches. A major litigator for the disability community since 1993, DRA has won or settled more than 100 cases under the ADA and other laws. One of potential interest to readers of this month's San Francisco travel article (page 30) was a lawsuit against the Muni bus system for refusing to allow service dogs on buses. Now the transit system allows dogs and provides awareness training for its drivers. DRA's high-impact class action suits have made thousands of facilities throughout the country accessible and enforced access rights for millions of people with disabilities in many key areas of life, including education, employment, transportation and health care. DRA also sponsors the "Eagle & Turkey Awards," given to corporations that demonstrate progressive disability policies or reinforce negative stereotypes of people with disabilities. DRA, 449 15th St., Oakland, CA 94612; 510/451-8644; www.dralegal.org

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