Historic Ties
Historically, there were institutional and personal connections between Berkeley’s Center for Independent Living and Ashby Village. Many of those connections can be traced back to Professor Henrik Blum and his colleagues in the School of Public Health at the University of California in Berkeley, where Judy got her master’s degree. Blum was instrumental in Judy’s appointment in the 1970s to the board of the Over 60 Health Center, where she was a colleague of Blum and of my wife, Ashby Village co-founder Pat Sussman. It was there that the young disability rights activist was exposed to the issues faced by the aging.
The Over 60 clinic, founded by a multiracial group of Gray Panther women and the foundation of what became Lifelong Medical Care, was the model for the geriatric community clinic movement nationally, just as the Center for Independent Living in which Judy was a guiding light became the model for more than 400 independent living organizations around the world. To complete the circle, former Over 60 and Lifelong CEO Marty Lynch was a primary mentor and ally in the formation of Ashby Village, as he had been for Judy and CIL, and Lifelong was the initial fiscal sponsor of Ashby Village.
Others who have been prominently associated with both Over 60/Lifelong Medical Care and Ashby Village are AV Board Chair Andra Lichtenstein, who served for 10 years as LifeLong planning and development director, and board member Steve Lustig, a retired associate vice chancellor at Cal who also served on the Lifelong board and was instrumental in bringing together Ashby Village, CIL, Lifelong Medical Care, the city of Berkeley and other organizations as part of the Age-Friendly Berkeley Action Plan. Martin Paley, a member and early supporter of Ashby Village, introduced Judy in the fireside chat. She expressed her deep gratitude to him for mentoring her and providing a vital early grant to the Center for Independent Living when he was chief executive of the San Francisco Foundation.
Aging and Disability
In her memoir, Being Heumann, Judy wrote of the links between disability and aging, saying that one of her contributions to the Over 60 board "was to introduce the idea that disability was a natural part of the aging process. Thus the fact that people acquire disabilities as they age should be accommodated so that people can be active in the community."
In her fireside chat, she elaborated on the common missions and challenges of the independent living movement and the independent aging movement, calling her involvement with the Over 60 board "a very eye-opening experience." She saw how, as people aged, they were acquiring disabilities, "which may be nothing more than becoming older and not being able to run up and down stairs as easily as you did when you were in your 20s." On the Over 60 board, she was presented with the same issues in the aging population that she had been addressing in her largely youthful disability rights/independent living movement. "[In] the disability community we were fighting against segregated anything. ... We didn’t want housing (only) for disabled people; we wanted housing that was accessible (for everyone). We wanted more home- and community-based services."
There was another common feature of the two movements. As Judy said in her talk, "the model of the Disabled Students Program at Cal and the Berkeley CIL was very important because it was very much linked to the community defining the needs that it had. Also similar to what was going on with Over 60 Health Center. There was a program set up, led by seniors, and it was creating a vision, a model for what people wanted (in order) to be able to live and be active in the community. So part of what we were learning was the importance of coalition."
At the World Institute on Disability, which Judy co-founded in Berkeley with Ed Roberts and Joan Leon, she organized the first program on disability and aging. Half of the participants were disabled individuals, and half were people from the aging community. The purpose was to look at what their common vision was and learn how to work collaboratively.
Independence and Community
Judy said in her fireside chat that "One of the other important issues about the disability rights/independent living movement is the fact that disabled people are the leaders of the movement. And I think programs like Ashby Village and others are so important because they are being led in most cases by older individuals, and obviously the goal is to keep people in the community, but I think there still needs to be stronger relationships to really allow (older) people to feel comfortable in the skin of having a disability, of which there are many different types ... I think if we can come together in a more powerful way, in the end it will be really be an advantage to all of us."
In a poignant example of the discomfort many older people feel with disability, Judy cited her own mother, her implacable advocate from childhood on who nonetheless resisted being seen using a wheelchair herself when she had cancer late in life.
Despite the common goals of the disabled and aging movements, Judy said, "I would say there is still not enough going on where the intergenerational movement of disabled people of all ages, older people, younger people ... it’s still not strong enough. We’re still not coming forward in a more unified voice, which means that we need to be learning from each other and dialoguing with each other." And, she pointed out, "disability is so varied but also cuts across the entire BIPOC community, LGBTQI community, religious community etc." She appealed for "more reflective, more proactive work ... within these communities to really look at what are the biases within our organization, what are we doing that is or is not inclusive of people with various forms of disability ..." Another challenge she emphasized is that other movements still have not integrated disability issues into their own agendas. "I would say that’s true in aging where, while there are people who are older and have disabilities, they are not necessarily disability advocates."
There’s a contemporary buzzword for the kind of cross-group dialogue that Judy advocated throughout her years as an activist and public official – intersectionality – and the value and roots of that concept were major takeaways from the Ashby Village program, as it was of Judy Heumann’s long career of organizing and advocating, in Berkeley and then nationally and globally. Ashby Village is very fortunate to have been able to hear her elaborate on those themes first-hand, in what turned out to be her final days.
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Related: Watch the tribute by MSNBC's Rachel Maddow, "Because she made a fuss, Judy Heumann made everyone's life better"