Talking with A leading disability rights activist

Name: Marilyn Golden
Age: 60
City: Berkeley
Position: Senior policy analyst, Disability Rights Education and Defense Fund

 

J.: The Disability Rights Education and Defense Fund is based in Berkeley, but many people haven’t heard of it. What is it?

Marilyn Golden: DREDF is a foremost national law and policy center on disability civil rights. We work on policy such as the Americans with Disabilities Act — which I had the great honor of participating in the development of — and other training, technical assistance and disability rights litigation. I’ve been here since 1988.


J.:
You are a wheelchair user yourself. Is your background in law?

MG: No. I moved into this work from conducting grassroots disability rights advocacy. Nowadays I work on developing transportation policy under the ADA, and also on architectural barrier policy, which is what accessibility standards should say about how to make buildings accessible for people with disabilities.

Marilyn Golden

J.: You were honored this year by the White House as a transportation “Champion of Change.” What did you do specifically to earn that award? Did you go to the White House?

MG: 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. The ceremony was in the old executive office, near the White House, with the secretary of transportation conducting it.

J.: Did you have an Obama sighting?

MG: Not that time, but I shook hands with President Obama on the 20th anniversary of the ADA in 2010. Perhaps even more meaningful to me are the relationships I’ve developed with people in Congress who are great champions of disability rights: Sen. Tom Harkin, the late Sen. Edward Kennedy and our local [recently retired] Congressman George Miller, to name a few.

J.: What’s your Jewish background?

MG: I grew up in San Antonio, Texas, with a Reform background, and got turned on to an even stronger Jewish identity in the Reform Jewish youth movement. Now I’m an active member of Kehilla Community Synagogue.

J.: Is the Jewish community as forward thinking as it can be on disability issues?

MG: 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.

J.: With DREDF, you are also a strong voice against physician-assisted suicide. Why do you oppose it?

MG: Because of direct threats to the disability community, but also because it’s a danger to everyone. People often think, “This is the right position for a liberal to take.” But it turns out that where assisted suicide is legal, some people will lose their lives without their consent through mistakes and abuse. No safeguards have ever been enacted or even proposed that can prevent an outcome that can never be undone.

People often support it because they’re concerned about end of life pain, but, in fact, anybody dying in pain can avail themselves of something that’s already legal: palliative sedation.

The disability community is very much at risk — as our lives are not deemed to be as valuable as others — but we’re not alone in the risk. There’s also significant risk of elder abuse. An heir or an abusive caregiver can steer the person toward assisted suicide, pick up the lethal dose and, in the end, even administer it to them because no witness is required at the death.

Headshot of 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."