Marilyn Golden with Sen. Tom Harkin during her lobbying efforts for the American with Disabilities Act.
Marilyn Golden with Sen. Tom Harkin during her lobbying efforts for the American with Disabilities Act.

Marilyn Golden, disability rights activist who lobbied for ADA, dies at 67

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Marilyn Golden, an activist in the disability rights community with a national profile whose joyful presence made an indelible mark on Piedmont’s Kehilla Community Synagogue, died at home in Berkeley on Sept. 21 of melanoma. She was 67.

A wheelchair user since an accident in college, Golden was a key figure in the drafting and passage of the 1990 Americans with Disabilities Act. She continued to advocate for the disabled — especially when it came to the use of public transportation — for the rest of her life in her capacity as senior policy analyst for the Berkeley-based national organization Disability Rights Education and Defense Fund (DREDF). She was also a strong voice there against physician-assisted suicide, connecting the practice to people’s fears of disability.

Golden was born March 22, 1954, and raised Reform in San Antonio, Texas. Her father owned a restaurant and currency exchange, and she was very active in TOFTY, the Texas-Oklahoma Federation of Temple Youth, part of the national Reform Jewish youth movement.

She graduated magna cum laude from Brandeis University as a member of Phi Beta Kappa. Before graduating, she had an accident while traveling that caused a spinal cord injury.

Avi Rose, former executive director of JFCS East Bay, met Golden when they were students at Brandeis, and they spent their junior year abroad in Israel at the same time in the late ’70s. She remained one of his closest friends, and he flew to Houston to spend time with her when she was in rehab after her summer accident in Europe.

“It was tough and tearful, and we had a lot of fun, actually, kibitzing with the nurses and commenting on pretty much everything,” he recalled. “A few years later, Marilyn and I each moved to California on the same day in June 1978. She wanted to be in the epicenter of the emerging disability rights movement.”

In an interview she did with DREDF, where she began working in 1988, she said, “I got radicalized, in a general sense, after I got hurt.” She chose to focus on disability rights “because I realized this was a place where I could play a role.”

Her lobbying for ADA in Washington, D.C., brought her into working relationships with Sens. Ted Kennedy, Tom Harkin and Bob Dole, among others. Rose accompanied Golden to Washington in 1990 for the law’s signing.

“Marilyn had the attitude that there was nothing she couldn’t do,” he said, “so I was compelled to adopt that attitude as well.” Going up and down stairs became their specialty, and they also went on numerous rafting trips together.

In 1996, she was appointed by President Bill Clinton to the U.S. Access Board, where she served for nine years, advocating for people with differing disabilities, not just mobility issues.

I got radicalized, in a general sense, after I got hurt.

Other disability issues she worked on included making buildings more accessible, expanding benefits and looking for ways for the disabled community to live more independently.

In 2015, she was honored by the White House as a transportation “Champion of Change.” In an interview with J. that year, she said of the award: “I’m not sure what they based it on, but I have spent a number of years pushing the envelope to have stronger civil rights protections in transportation for people with disabilities, whether we’re talking about bus, train, ADA paratransit or privately funded transportation. I wrote a number of guides [that] brought together all the information [and] emphasized the rights of people with disabilities.”

One way she made her mark at Kehilla Community Synagogue, where she was a longtime member, was in always pushing for more access for the disabled. When speaking of the Jewish community specifically, in 2015, she also told J., “There’s still a long way to go. People recognize that many of us have unconscious prejudices about race and gender, but do not recognize that many of us have unconscious prejudices about disability. People assume what they feel about disability is accurate. A common ‘gut feeling’ is that our lives are terrible, or that one would be better off dead than disabled. Or people are surprised when we function with any level of competency. These are prejudices that, by and large, people don’t recognize, and the Jewish community is very similar to society as a whole that way.”

Golden had told many that she had dropped out of synagogue life for a time because she was disheartened at the discourse around Israel-Palestine. At Kehilla, she was thrilled to find a spiritual home where discussion of a Palestinian state was a core belief of the community.

Golden was always near the front at services, so that people standing in prayer wouldn’t block her view, and her presence there was most felt by the service leaders.

“She would just smile and cry from joy and cry just from what we were doing,” said Debbie Fier, a prayer leader at Kehilla, who because of her drumming is referred to as “the heartbeat of the service.”

“There would always be these hugs at the end, and she’d say something like, ‘I can’t believe you all do what you do, it brings me to a place that nothing else does,” Fier said.

Shulamit Fairman, Kehilla’s cantor, recalled how Golden “would beam love at us through her eyes, and that inspired us to beam back to everyone and cry ourselves. It was a great gift.”

Fairman added, “She showed up at Kehilla on her own terms, and that was connecting through activism, through celebrating, through grieving and through praying together. Her mind was always brilliantly engaged and her heart was always open.”

Golden is survived by her longtime companion, Rabbi David Cooper, stepchildren Talia Cooper and Lev Hirschhorn, niece Jordi Pollock and nephews Russell Miller and Adam Miller.

Donations in her memory can be made to either dredf.org/support-our-work or kehillasynagogue.org/donate.

Alix Wall
Alix Wall

Alix Wall is a contributing editor to J. She is also the founder of the Illuminoshi: The Not-So-Secret Society of Bay Area Jewish Food Professionals and is writer/producer of a documentary-in-progress called "The Lonely Child."