Marilyn Golden: An Unforgettable Legacy of Wisdom, Dedication, and Results
There’s been an incredible, powerfully moving and profoundly deserved outpouring of love and gratitude for Marilyn Golden since her passing on September 21st. Attending and sharing thoughts at her memorial service, I was again reminded of her amazing contributions to the accessibility of our country, from her pushing through the halls of Congress toward passage of the Americans with Disabilities Act (ADA) to the often thankless work of preparing public comments on proposed ADA regulations. As many of us who fought the battle for accessible public transportation know, Marilyn was the unsurpassed national expert on the technical policy issues that would determine whether disabled people would finally be able to get around in our communities like everybody else.
Anyone who follows Not Dead Yet also knows that Marilyn has been a mission critical partner in our work opposing assisted suicide laws. In the last decade, we sought each other out on assisted suicide policy education and advocacy activities to the extent that we were almost daily companions. I have more than 10,000 emails from Marilyn reflecting our invaluable and ongoing dialogue. Initially upon her passing, I found it hard to focus enough to say much more than that, but the work she did on NDY’s signature issue should not and could not be ignored.
Even the New York Times, which supports assisted suicide laws, could not omit this important aspect of her advocacy in its September 28th tribute, Marilyn Golden, Effective Voice for the Disabled, Dies at 67:
She also actively opposed efforts in several states to legalize assisted suicide. She argued that such practices were fueled by a fear of disability — “the public image of disability is as a fate worse than death,” she said — and prejudice against it, citing “economic pressures of the health care system to relieve itself of its most expensive patients.”
“We are not opposing aggressive palliative care — that’s pain and comfort care — nor the right to refuse or withdraw medical treatment,” she added. “Nor are we opposed to the proper, narrow application of a treatment called palliative sedation, when death is truly imminent. We are only opposing more aggressive ways to hasten death,” like legalizing lethal injections or prescriptions of barbiturates.
Nor could the Washington Post on September 29th:
“Because the public image of disability is as a fate worse than death, and because a disability can indeed bring about misery because of the lack of good support services . . . our societies have unfortunately become fertile ground for the forwarding of these laws,” she said in a 2008 speech. “Many have argued that these laws play directly into the economic pressures of the health-care system to relieve itself of its most expensive patients, and this can hardly be more true anywhere than in the United States.”
Over the years, Marilyn has trained countless disability advocates on the specific failures of purported safeguard in assisted suicide laws. She’s spoken before national, state and local audiences in person and via webinars. At least as importantly, she’s spent untold hours personally mentoring people with disabilities who have wanted to testify and advocate against a public policy of assisted suicide, often individuals with personal experiences of medical discrimination and neglect. Marilyn took the time to explain the failures of safeguards in these bills and to organize assisted suicide resources on the DREDF website to ensure that advocates had the tools to make their voices heard.
She has also personally testified against assisted suicide bills in numerous state legislatures as well as organized disability opposition in key states. Her writings on the subject include scholarly articles as well as numerous op-eds, and she served a central role in the National Council on Disability’s groundbreaking report on The Danger of Assisted Suicide Laws.
Tributes to Marilyn are still appearing, including DREDF’s Memorial page, the Patients Rights Action Fund, Jim Weisman of United Spinal and NDY’s initial announcement. I shared these thoughts at her Memorial Service:
It’s an honor to be asked to say a few words about Marilyn. We first met when I was a newbie to the disability rights movement, living in Los Angeles in the 1980s. It wasn’t long before we were both asked to serve on the California Attorney General’s Commission on Disability and, as she did for so many, Marilyn took me under her wing, mentoring and role modeling how to do the hard work, the precision efforts required to squeeze meaningful progress out of something too often designed to hold progress back. Her knowledge, skill and tenacious focus were always a force to be reckoned with. She got things done. I was arrested in the 1987 transportation access protest she mentioned in the video, I suspect she was too, but I hadn’t realized what a turning point those events were for her.
Beginning in the late 1990s, Marilyn also played a critical leadership role in disability advocacy against assisted suicide laws, starting in California. In this past decade, I had the privilege of working with Marilyn on an almost daily basis. Given the struggle for healthcare access and equity, neither of us viewed assisted suicide as a progressive cause. As the public policy fight expanded to many states, she was my closest companion in organizing disability advocates across the country, drawing from relationships built over her long career. She trained countless advocates on the specific failures of purported safeguards in assisted suicide laws, speaking before national, state and local audiences. As always, she mentored, she wrote, both scholarly articles as well as numerous op-eds for mainstream media. I’ll be sharing some of those on the Not Dead Yet website. She was also masterful when giving interviews. At one point, she composed these words to express her reasons for devoting so much of herself to this issue: “If assisted suicide is legal, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or even proposed, that can prevent this outcome, which can never be undone.” Her compelling words now appear on many Not Dead Yet information and training materials. Three years ago, the National Council on Disability contracted with her to do research for its groundbreaking report on The Danger of Assisted Suicide Laws which is distributed to policy makers as the definitive exposition on this subject.
We shared many commonalities in our approach to work, felt so much in synch on that level, that I find it hard to separate the personal and professional. I’ve been hearing today about quite a few non-work things Marilyn and I had in common but never discussed, being so focused on work. So thank you for that. I truly hope she knew how incredible her contributions have been and knew that we will keep her incomparable gifts, her legacy, alive in our hearts and minds.
Those things we almost never mentioned were science fiction, music from our younger days and favorite TV shows. I really wish we had. I can imagine the great fun we could have enjoyed over those things and I’m sorry we didn’t. Still, I’m so glad she made room for all those things and so much more in her beautiful life. Like so many in the disability community and beyond, I’m honored to have shared such invaluable time with her. She’s left an unforgettable legacy of wisdom and dedication on which we can all keep building.
Diane Coleman is the President and CEO of Not Dead Yet, a national disability rights group which she founded in 1996 to give voice to disability rights opposition to legalization of assisted suicide and euthanasia. Prior to that, she served for three years as Director of Advocacy at the Center for Disability Rights in Rochester, New York and twelve years as Executive Director of Progress Center for Independent Living in Forest Park, Illinois. Ms. Coleman has presented invited testimony four times before Subcommittees of the U.S. House of Representatives and Senate. She is a well-known writer and speaker on assisted suicide and euthanasia, and has appeared on national television news broadcasts for Nightline, CNN, ABC, CBS, MSNBC and others, as well as National Public Radio. She co-authored Amicus Briefs filed in the U.S. Supreme Court and various state courts on behalf of Not Dead Yet and other national disability organizations on the topics of assisted suicide and surrogate health care decision making. She has a law degree and Masters in Business Administration from UCLA. From 2003 to 2008, she was a member of the adjunct faculty at the University of Illinois at Chicago and co- taught two graduate courses in disability and medical ethics. Ms. Coleman is a person with neuromuscular disabilities who has used a motorized wheelchair since the age of eleven.
Support Disability Media and Culture
DONATE to the Disability Visibility Project®