In Memory of Marilyn Golden

Marilyn with large scarf around her neck smiling
Marilyn Golden
1954 – 2021

“One hopes that the changes in law and policy we worked on
at DREDF will be something the disability community can build on.”
Marilyn Golden, answering the question, “What would you like your legacy to be?” in a 2002 interview

Marilyn Golden, senior policy analyst for the Disability Rights Education & Defense Fund (DREDF), died at home on September 21, 2021, surrounded by her family. A long-time disability rights advocate, she played a key role in the development, passage, and implementation of the Americans with Disabilities Act of 1990 (ADA). Her advocacy molded and shaped accessibility in the United States and improved architectural access and standards worldwide. She spent more than three decades working to see that the ADA was implemented and enforced, and teaching others the value of disability civil rights via, and beyond the law.

“Working on the ADA was one of the most important experiences of my life,” said Marilyn when asked about the impact and evolution of the ADA in 1999, “and it is something I’ll never forget. Something I treasure and value—to both have such an incredible experience and also to make a contribution.”

And contribute, she did.

From her leadership on both the development and implementation of the ADA, to the unglamourous, nitty gritty details she steadfastly injected into statutory guidance and regulation, to the people she trained and gently mentored every step of the way, our friend and colleague Marilyn Golden changed for the better how we use public spaces, design buses, trains, planes, and boats, and create equitable transit services. She also thought that assisted suicide was dangerous public policy for disabled people and her opposition never faltered, even in the face of powerful forces working for legalization.

Marilyn graduated Magna Cum Laude and Phi Beta Kappa from Brandeis University in 1977. Soon after acquiring her disability in 1976, her passion for justice led her to channel her widely respected focus and commitment in service of the emerging field of disability civil rights.

“I got radicalized, in a general sense, after I got hurt,” Marilyn later recalled. She was drawn to the disability movement, in part, “…because I realized this was a place where I could play a role.”

In the early years of her disability advocacy, it was equal access to transportation that first harnessed her energy and attention and, as she phrased it, “to put all of my political efforts into the disability movement, both on the job and off the job.”

Marilyn’s management and leadership skills were evident early on when she was hired at age 25 as the Director of Access California, an Oakland, California resource center on architectural and communications accessibility. She served there for nine years before joining DREDF in 1988.

While working to pass the ADA, Marilyn also served as the Co-coordinator of the Disabled International Support Effort, which provided material aid and technical assistance to disability organizations in developing nations. Her involvement in international disability rights grew following the ADA’s passage. She was called upon to share her disability rights knowledge with audiences and advocates in South Africa, Germany, Austria, New Zealand, Australia, Switzerland, Spain, Costa Rica, the European Union, and at the United Nations Fourth World Conference on Women in Beijing, China.

“What you want is rising expectations. That’s the clearest sign of progress,” she said in the 1999 interview. “There will be many things [the ADA] does not succeed in doing, and yet society will still be in a very different place than it would have been, had we never had the law. There’s also the difference it makes to people with disabilities, and I have seen a huge rise in the level of expectation of the community. The community knows, now, what it means to get major legislation passed.”

Following passage of the ADA in 1990, Marilyn continued to play key roles in policy development on the federal level, in the areas of transportation and elimination of architectural barriers. She was appointed by President Bill Clinton to the U.S. Access Board in 1996, where she served until 2005. President Barack Obama honored her as a White House Champion of Change in Transportation in 2014. She also served on three federal policy advisory committees: the Rail Vehicle Accessibility Advisory Committee (U.S. Access Board, 2013-2015), the ADAAG (Americans with Disabilities Act Architectural Guidelines) Review Advisory Committee (U.S. Access Board, 1994 – 1996), and the Urban Mass Transportation Administration’s ADA Federal Advisory Committee to assist in developing the DOT ADA regulation (U.S. Department of Transportation, 1991).

Further reflecting on the early days of the ADA, Marilyn recalled, “I spent eight months in D.C., the main year that the ADA was going through Congress, and I had four major roles… One was some of the policy development, particularly on transportation, and also some issues on architectural barrier policy, structural barrier removal. The second was grassroots organizing. The third was lobbying and the fourth was writing. A lot of written material, a lot of background material. And it worked, not perfectly, but, largely, I think it did work, and sometimes it worked very well.”

The same could be said of Marilyn’s decades long advocacy.

From 1992 – 1994, Marilyn directed the ADA Training and Information Network, a federally funded training project that trained and supported a network of 400 ADA specialists who themselves had disabilities. As the lead trainer for each of its eight week-long training programs, Marilyn directed and led numerous in-depth ADA training programs that gave thousands of on the ground operatives the comprehensive knowledge they needed to propel the ADA from an idea to a practical tool for creating a more accessible, equitable society. She was the principal author of DREDF’s publication “The ADA: An Implementation Guide,” which brought the ADA to an even greater number of activists, advocates, and allies.

Marilyn’s approach to public policy merged the ideal with the practical: “Why does anyone take heed of disability access? Nobody handed out civil rights laws on a silver platter. The disability movement worked very hard to attain these mandates, including through direct action—blocking buses all through the ’80s—and civil disobedience. We have to persuade business-friendly legislatures that the civil rights of people who are often segregated and excluded from society are important enough to make them a requirement.”

Manifesting this idea in necessary new directions, Marilyn applied the lessons learned in transportation advocacy in her lead role conceiving, producing, and leading the Disability Rights Leadership Institute on Bioethics in 2014. The Institute was an outgrowth of Marilyn’s longstanding opposition to assisted suicide. Beginning in 1999, she authored influential articles explaining why assisted suicide laws are dangerous public policy for disabled people, and she worked in many successful campaigns to defeat assisted suicide legislation in states across the U.S. She also represented the disability community in debates and dialogues on the subject.

Her “never stop learning” approach also applied to mentoring and leadership development. “Bringing in new people can be challenging, but there’s enough activity now in the disability community that is constantly happening. You have to constantly be bringing in new people in every possible way you can think of.”

Marilyn’s approach to advocacy is perhaps best described as always evolving, building on past success or existing knowledge, and consistently staying focused on the bigger picture. She was willing to ask sometimes difficult, often unwelcome, but necessary questions of herself and others. Never shirking the difficult, Marilyn routinely, regularly pursued explanations and answers that the end goal deserved and required.

Marilyn in profile smilingMarilyn as we knew and loved her is gone, and—as is usually the case for many extraordinary people—the intricate backstory of all she accomplished and influenced is not immediately apparent.  But make no mistake, the legacies of Marilyn’s life’s work surround us. They are, quite literally, embedded in American infrastructure. While visionary leaders are routinely credited with looking up beyond the far horizon, one of the things that set Marilyn apart was that she recognized how important it was to also look down. To pay attention to the important details others might’ve missed.

From her leadership on the development and implementation of the ADA, to the unglamourous nitty gritty details she steadfastly injected into statutory guidance and regulatory reform, to the people she trained and mentored every step of the way, our friend and colleague Marilyn Golden literally changed how we design, develop and enjoy the world we live in. Mere words don’t measure up. But, much like the countless, but largely unseen regulations and guidelines Marilyn routinely nurtured to fruition, perhaps no tribute could be more fitting.

Thank you, dear friend for leaving such a solid foundation for DREDF, and others, to build on.

We love and will miss you.

43 thoughts on “In Memory of Marilyn Golden

  1. 'Lola' Kelly M.

    Today is the day I learned of Marilyn’s passing. wow! what a day. a year after. Marilyn was my vey first ‘boss’ at my first summer job back in 1978 or 79 at BORP! She blew my mind even as a 14 year old teen. I was ahmazed by her energy and spirit. We remained in touch for a couple of decades and then fell out of touch. I so wish she were her to chat with now. I learned a ton from her about disability rights advocacy. She introduced me to ‘peer support counseling’ way back when. I will always recall what I thought when I saw her moving about in her wheelchair running things at BORP and later we met up again in Oakland. It’s ahmazing how most of us are benefitting from much of Marilyn’s work. The work she did and who she was still ‘blows my wig back’ as they say! Talk about a bad ass! What a fierce warrior with a strong constitution. I love ya Marilyn Golden dear…til we meet again…Golden Lady by Stevie Wonder is the outro 4 now…rest in power and peace~

    Reply
  2. Erica C. Jones

    Years of collaboration have passed. Marilyn and I had the privilege of working on Capitol Hill in Washington, D.C. during the passage of the ADA. We accomplished great things advocating for a law that actually gave people with disabilities a standing of “first class citizens” graduating from the long term second class position. RIP You accomplished great things during your time on earth. Now you will build accessible pathways to heaven and beyond. Bravo!

    Reply
    1. Mitchell J. Rappaport

      I am so very sorry to have just learned of Marilyn’s passing. After having selected Lex, Evan and the late Justin Dart, Jr. (d) to “lead the way”, I later got behind and “connected” with Marilyn in her leadership of DREDF about the Civil Rights Law (“Disability Rights”) that I had co-conceived together with the late U.S.A.G. Ramsey Clark. When he and I had met following a lecture that he had given on January 2, 1968 at The Chautauqua Conference Center in Chautauqua, N.Y., we talked about how I might my idea passed through Congress and signed, how to get it written into Law, and who I might turn to for assistance.

      I had already been Tutored in U.S. Civil Rights Law since 1964 by Herman Schwartz, now Retired but still Lecturing Civil Rights Law Professor at: “The Washington College of Law”, American University, and when we first began when I was 13 years old he was at: “The University of Buffalo Law School” in Buffalo, N.Y. Marilyn was instrumental and pivotal in her role in the passage of: “The ADA”, and I will miss her warm spirit, her feedback, her enthusiasm, her wisdom, her sense of justice and her laughter most of all.

      Reply
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  6. Theresia Degener

    Marilyn was a true friend, a wonderful colleague, and important disability rights mentor to me. When I met her 1987 during my LLM study program at Berkeley Law University of California we started a friendship which lasted until her sudden death in 2021. She helped me understand US disability rights movement, law and policy. She came to Germany several times and helped us in the disability movement to get disability discrimination law passed and fight for its implementation.
    Personally she always offered support. When in doubt, whether I would make it through law school, and later to be a good enough law professor, she was there to give hope and build up self-confidence.
    Politically she had great skills and capabilities. When questions arose about the right way forward in disability law and policy she was there to share her valuable and sharply reflected analyzes on social policy and legal approaches.
    Marilyn was culturally sensitive and always wanted to learn from others as much as she was willing to share her own experiences and wisdom. She was there when she was needed and often took personal risks in supporting others. Her great love for humanity enabled her to be a great listener, raise awareness and convince those who did not believe in disability antidiscrimination on policy. At the same time she was radical in her how own beliefs and conviction. Her radical attitude was paired with a great sense of humor and a warm heart. She was a woman to be loved and befriended.
    I’m proud I was among her friends.
    Theresia Degener

    Reply
  7. Sandy Ross

    Getting to know Marilyn and DREDF made me realize that our ADA efforts could bring actual reform – something that is rare in a field which not understood and which most people did not care about. Of the dozens of times I called upon Marilyn for advice or support, she always had ideas to try. When the Access Board came out with wording which said that Multiple Chemical Sensitivities and Electromagnetic Field Sensitivities could be disabilities, it was a huge victory and vindication. I think all of us who suffer these disabilities felt we had finally been legitimized. It was and still is huge. I quoted the Access Board several times recently when urging legislators to veto Telecom sponsored Bills to take local jurisdiction over 5Get al away from communities (where people had a chance to opt out of a 5G box on the pole outside their home, blasting them 24/7 with toxic emanations). Thank you Marilyn. Sandy Ross, Health & Habitat, Inc.

    Reply
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  9. Carol Wright Kenderdine

    There is a select group of people among us who live a life of service, and whose legacy and impact will remain long after they are gone. Marilyn tops that list! I met Marilyn almost 9 years ago when I moved to DC. She was a legend in the advocacy world for individuals with disabilities. I learnd a lot from Marilyn about the need for continued advocacy for the ADA, the importance of working passionately for improved access, and the significance of empowering the voices of people with disabilities. We need to ensure that we model the example she set for all of us. My deepest condolences to her family, co-workers over the many years, and friends. She will be dearly missed.

    Reply
  10. Erick Mikiten

    What sad news! I always admired Marilyn’s matter-of-fact, clear thinking. What a difference she made, helping to build a strong foundation for all of us to build on for more equality and a more inclusive world in so many ways.

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  11. Rajai Masri

    A Huge Loss. This great lady left her deep mark in History and in the Historic Record of Humanity. She made a Huge difference striving to create a better world despite the so many huge odds. She left us so soon as her contributions and relentless dedication will further reinforce good intentioned people of good will to carry on on her path. May her Soul Rest in Peace.

    Reply
  12. Edwina Juillet

    So sorry to learn of our loss, Marilyn’s passing. The memories that I most cherish is Marilyn’s sharing her personal life’s path experiences. She was both a tough fighter and a gentle and patience colleague. I loved and respected her.

    Reply
  13. Edward Steinfeld

    Marilyn and I worked closely on several committees over the years. She was one of the smartest advocates and critical thinkers I have ever known. Her contributions to disability rights policy and implementation of the laws are extensive. And, as a person, she was gracious, witty and always a pleasure to be with. She will be missed greatly!

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  14. Shoshana Shamberg

    Marilyn was a chaver (friend in Hebrew) and mentor. We served on the ANSI committee together for decades. She forced me to have a voice and supported the role of AOTA and OTs in creating accessible environments. Shalom dear Marilyn. May your neshama soar to even greater heights as you make you aliyah. Your work helped thousands to achieve greater disability civil rights and accessibility. You will continue to inspire those who knew you and those who continue to benefit from your powerful work.

    Reply
  15. Kimberly Paarlberg

    I had the privilege to work with Marilyn for many years on the A117.1 committee. She had an unforgettable style and spirit. Her knowledge and enthusiasm helped inspire individuals and build many lasting coalitions. She has truly left a long lasting legacy with all the work she did. I will miss her humor and her smile.

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  16. Peter Margen

    I first met Marilyn in 1985 when she hired me for the Access California program. It was a trial by fire experience for me and Marylin was an excellent mentor. She taught me a great deal about people with disabilities, working with bureaucracies and making the world accessible. I always admired her sense of humor and we had some great laughs together. She will be missed!

    Reply
  17. Marty Omoto

    This news is shocking and so sad! All of us are heartbroken in losing Marilyn especially now. What a difference she made in so many lives – and her work will continue to do so – and her life and everything and everyone she touched will be an infinite inspiration. But we will miss her. We worked together over the years on so many issues – as she did with so many others. Its been awhile since we have seen each other, but we always embraced before parting until we saw each other the next time. More than anything, we all loved her for who she was to each of us as such a loving, caring, funny and strong person. I think we all wish we could have given her that last embrace. We do have her work and all she did for all of us to embrace us and all those who follow after us. But we will always, always feel the loss of Marilyn not being with us in the here and now – and for that we will always miss and love her. Love and prayers to Marilyn and to her family.

    Reply
  18. Raymond Uzeta

    Sad to learn that we’ve lost another great disability advocate. I met Marilyn in the ’70s when I worked at CIL in Berkeley, then at the ILRC in San Francisco. Most people with disabilities have never met Marilyn (or other like advocates), but have benefitted immensely by Marilyn’s efforts and sacrifices.

    Reply
  19. Michael Chacko Daniels

    So very sad to hear of Marilyn’s passing. For several years when I coordinated CIL’s Access Project in Berkeley, Marilyn was always a helpful collaborator in getting ramps built in Oakland. More than anything else, I loved her positive, cheerful attitude. She was always willing to find a way to be helpful and supportive. Many were the calls I made to her at Access California. My heartfelt condolences to her family and her many friends.

    Reply
  20. Lois Snyder Sulmasy

    Marilyn was an inspiration. I learned so much from her. Her compassion and wisdom will be greatly missed. Thank you, Marilyn.

    Reply
  21. Center For Independence of Individuals with Disabilities

    Marylin will be missed by many. She was a mentor to many. She was that to me. The great thing about Marylin was she never acted like I am teaching you something. Instead it was more of a journey to figure out with someone. She always knew I had an interest in transportation. Rater than telling me all the things she had accomplished through hears years of incredible advocacy (seen) above, she’d always ask for my opinion or “take” on an issue or situation.

    I had the honor of working with Marilyn on many advocacy initiative throughout the years. She always had a incredible way of teaching through the process of a journey. She will be forever missed.

    Reply
  22. Tom & LindaNorton

    I first met Marilyn when I joined the DARAC committee at NFPA. I found her to be a tireless advocate for the Disability Community and a great teacher for to one who asked many questions.
    My wife Linda & I will miss her wonderful smile and contagious laugh. RIP

    Reply
  23. Don Rogers

    Marilyn and I were in rehab together in Houston at TIRR in 1976; both of us with spanking new spinal cord injuries. We spent many hours talking, laughing and lamenting. Though she moved away from the Houston area, I was able to follow her career through some friends, and later the internet, and was always so proud of and thankful for her work. Be at peace, Marilyn.

    Reply
  24. Angela Van Etten

    The world without Marilyn Golden will never be the same. For eight years we served together as disability delegates on the International Code Council / American National Standards Institute (ICC/ANSI) A117.1 Committee on Accessible and Usable Buildings and Facilities. Marilyn represented DREDF and I represented LPA from 1994 to 2002. We connected immediately. I will forever be indebted to Marilyn for taking me under her wing to understand the process, know who to trust, and lead by example. There are too many memories to capture here, but I will always remember trudging through the snow together, our delight at discovering an all dessert buffet, and how artfully she marked a boundary for a delegate representing a business when she asked an inappropriate question. Over the years, our paths continued to cross periodically as we advocated for public access and against assisted suicide. I deeply regret that we won’t have time together again. My thoughts and prayers are with Marilyn’s co-workers, friends and family.

    Reply
    1. Sharon Toji

      The last almost two years have been such a disaster — COVID, Afghanistan, January 6, fire, flood — disaster everywhere. But the disaster of hearing of Marilyn’s death has struck me as such a blow, both to accessibility, and to me, personally. All the years we worked together in the ANSI Committee, and when President Clinton formed the ADAAG Advisory Committee and Marilyn headed up the Communications Sub-Committee, I looked forward to Marilyn’s always sage and knowledgable advice, but i especially loved seeing her flit around the room in her chair, touching base everywhere, exchanging thoughts, giving advice, presenting her arguments. Marilyn was never completely still, and it was always in service of accessibility for all. It was not long ago that i sent her a question, and i had another one ready to go, as a matter of fact, about mainstreaming students with severe disabilities. Oh Marilyn, I need you, the world needs you and many more like you!

      Of all the moments over almost 30 years of working together, I will always remember, as one of the greatest compliments of my life this: I told her that I probably would have had more influence had I been disabled, and she replied, “Oh Sharon, as far as I am concerned, you are disabled!” Rest in peace, Marilyn. We will do our best to help carry on your work.

      Reply
  25. Rick Baudoin

    What a loss this truly is. Marilyn was a trailblazer and I really enjoyed getting to know her during our time working on the ADAAG. She has definitely left a legacy. God speed dear friend.

    Reply
  26. Ken Thompson

    Sad to hear of Marilyn’s passing. She is a true champion in disability rights and she was a mentor to me on many aspects of transportation accesssibility. I appreciated her candor and humor. I will miss her smile and laughter but her work on the ADA will live on. Thanks for challenging us and supporting us.

    Reply
  27. Steve Jacobs

    I’m so sorry to hear of Marilyn’s passing. Her legacy as a powerful disability advocate will serve as a perfect example for others to follow. Rest in eternal peace my friend. ❤🙏🏻

    Reply
  28. Steve Brown

    A true warrior in all he best senses of the word. Her legacy clearly lives on. Another great advocate and friend I will miss. Enjoy the next journeys.

    Reply
  29. John Kemp

    Marilyn was extraordinary. Our Disability Movement has lost a great leader and advocate. She was disability-cool like Paul Hearne. God bless Marilyn and her family and friends on this sad day.

    Reply
    1. Ann Deschamps

      John – you are right on the money – Marilyn was definitely disability-cool (love this term) just like Paul! I remember leaving my three month old daughter to fly to Houston so I could get Part II of the fabulous DREDF ADA Training with Marilyn and Pat Wright (the only thing that could drag me away from my baby). Marilyn was an amazing trainer who could make learning about ADA transportation requirements interesting. She was so approachable and down to earth – what an amazing contribution she made to the field. She will be missed!

      Reply
  30. June Kailes

    Crushing news! Celebrating the life of Marilyn Golden, a relentless advocate, mentor, role model & friend, who made huge, indelible impacts on accessibility. We go way back, we had fun, we worked hard, we had seasons in the sun!

    Reply
  31. Linda Martin

    My sincerest condolences to her family and friends.

    RIP Marilyn! Let’s hope there are just a few access issues in the afterlife. I never met anyone who would light up more in advocate mode, so this likely would be a little slice of heaven for her! She was truly a giant and a hero of mine.

    In the late 80’s, shortly after I was injured, pre-internet, and living in a small curb-cut-less, no accessible transportation town, I subscribed to DREDF’s newsletter and it (in particular her regular article) inspired me to not lose hope things might one day be different. It also inspired me to get involved as an advocate for persons with disabilities (which was my first professional job at a community college). For me, meeting her in person many years later was like meeting a Rockstar. Marilyn-thank YOU! You are missed.

    Linda

    Reply
  32. Denise

    So sad to hear of Marilyn’s passing. She was truly a leadership giant in our community. May her memory be for blessing. Thank you, Marilyn for all you have done to repair the world!

    Reply
  33. Kathryn McInnis-Misenor

    Oh my what a loss! I first worked with Marilyn during the passage of the ADA! We went celebrating after the final vote! She started as I did as a young shy organizer but soon became a powerful force for change! I will miss you woman!

    Reply

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