The Berkeley Scene
The Berkeley Scene
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.
"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?'"
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.
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.
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."
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.
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."
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."
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.
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?
"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.
Gotta Ditch the Quad