Marilyn Golden: An Unforgettable Legacy of Wisdom, Dedication, and Results

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[The Disability Visibility Project published this article by Diane Coleman four days ago, highlighting Marilyn Golden’s important work opposing assisted suicide laws.]

Marilyn Golden: An Unforgettable Legacy of Wisdom, Dedication, and Results

Diane Coleman

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.

Marilyn Golden [left] in her manual wheelchair with brown curly hair, wire rimmed glasses, purple shirt, conference name tag, a briefcase in her lap, seated next to Diane Coleman [right] in her motorized wheelchair with gray and blond bobbed hair, wire rimmed glasses, blue patterned dress with white sweater, tapestry shoulder bag and slim briefcase to her side. Both are smiling and leaning toward each other. The year is 2014.
Marilyn Golden & Diane Coleman (2014)
[Image Description: Marilyn Golden [left] in her manual wheelchair with brown curly hair, wire rimmed glasses, purple shirt, conference name tag, a briefcase in her lap, seated next to Diane Coleman [right] in her motorized wheelchair with gray and blond bobbed hair, wire rimmed glasses, blue patterned dress with white sweater, tapestry shoulder bag and slim briefcase to her side. Both are smiling and leaning toward each other. The year is 2014.]

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.

About

Photo of Diane Coleman wearing red print top and red sweater, smiling with gray bobbed hair, wire rimmed glasses and a nasal breathing mask
Diane Coleman

[Image Description: Headshot image of Diane Coleman wearing red print top and red sweater, smiling with gray bobbed hair, wire rimmed glasses and a nasal breathing mask with a white tube hanging downward.]

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.

Twitter: @ndycoleman and @NotDeadYetUSA

Does the ADA Require Euthanasia As A Reasonable Accommodation? – More on the CA Court Case

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On September 2nd, NDY was part of a disability release responding to a federal court case in the Northern District of California. Plaintiffs in the case argue that the ADA requires active euthanasia as a reasonable accommodation for some people to use the state’s assisted suicide law (End of Life Options Act, EOLOA). Their complaint states in paragraph 2:

[T]here is one group of Californians who cannot avail themselves of the benefits of this compassionate law: physically disabled individuals whose disability prevents them from self-administering the AID medication without assistance. Because the EOLOA requires patients to self-administer AID drugs and prohibits any assistance, patients whose disability hinders their hand strength or mobility are excluded from this State program. (Lonny Shavelson, M.D. et al. v. California Dept. of Health Services, et al., Case 3:21-cv-06654-VC, filed August 27, 2021)

The joint disability and patients rights organization statements by DREDF, NCIL, United Spinal, NDY, AAPD, Access Living and Patients Rights Action Fund came just days after the complaint was filed in California, where assisted suicide has been legal since June 2016.

Plaintiffs in the case include four doctors and two patients, the latter a woman with ALS and another with multiple sclerosis. Sandra Morris, the woman with ALS, stated in court documents:

I do not want to ingest the AID medications at present because I still am enjoying time with my loved ones. But unless the Court allows it otherwise, I will have to leave this world earlier than I want to, because I have to be able to swallow the medication or use my thumb to press that medication into my body. Today, I still have the use of my right thumb and my left hand, and I still have the ability to swallow and move my neck in a limited manner. But I know that I won’t have that ability—likely within a month or so.

The woman with MS expressed similar concerns about losing the ability to self administer lethal drugs.

As someone who co-directed an assistive technology center for six years, I think that the dilemma these women express is perhaps largely based on ignorance of technologies that would allow them to execute the final step in an assisted suicide. Not to mention the other methods of ending one’s life, including for people who cannot move even a thumb. So the case really amounts to a dramatized and gut-wrenching presentation of a false dilemma designed to move people to accept a justification for legalizing active medical euthanasia. We should not be fooled and, fortunately so far, the court did not buy it.

On September 14, plaintiffs filed a motion for a temporary restraining order and preliminary injunction demanding that these women be granted euthanasia in the future so that they would not have to use the assisted suicide law as soon at the following Tuesday. They invoked the Americans with Disabilities Act (ADA) as follows:

The EOLOA also provides that “[a] person who is present may, without civil or criminal liability, assist the qualified individual by preparing the aid-in-dying drug so long as the person does not assist the qualified person in ingesting the aid- in-dying drug.” Id. at § 443.14 (emphasis added). [Motion, p. 7]

Because the EOLOA prohibits assistance with ingesting AID medication, the benefits of the EOLOA are inaccessible to physically disabled terminally ill persons whose disability, as with Ms. Morris and Ms. Doe in the very near future, thwarts ingestion without assistance. Accordingly, the assistance provision violates the ADA. [Motion, p. 13]

Despite plaintiff’s emotional appeal, fortunately the District Court denied the motion on September 20. Here are some excerpts from the ADA analysis in the ruling:

The plaintiffs say they are seeking a “reasonable accommodation” to ensure that they can reap the benefits of the End of Life Option Act. But the plaintiffs have identified a “systemic barrier” to participation in the program—specifically, the prohibition on participation for people who are physically unable to administer the medication themselves. … The question in a case like this is whether the ADA requires California to modify its program to address the disparate impact on people like the plaintiffs, or whether such a modification would “fundamentally alter” the program—in which case the ADA would not require the modification the plaintiffs seek.” [Denial Order, p.2-3]

And on the issue of valid concerns about making such a fundamental alteration:

[I]n drafting the Act, the Legislature balanced that objective [to control the timing of one’s death] against its goal of protecting against the possibility of someone’s life being ended without their full consent. …

And most relevant here, the Legislature drew a clear line between assisted suicide and euthanasia, providing that a terminally ill person cannot obtain a prescription unless they can administer the medication themselves and specifying that there is no immunity from criminal or civil liability for someone who administers the medication to a terminally ill person. These provisions reflect a legislative concern that some people may feel truly committed to ending their lives but will ultimately change their minds. [Denial Order, p.3-4]

Of course, we also keep urging people to recognize the ADA violation inherent in assisted suicide laws, which set up a two-tiered system for providing suicide prevention for some people and suicide assistance for others, depending on one’s health and disability. For more on that, see my old ADA violation blog. But for now, the Court’s Order provides some welcome relief.

The next steps in the case are:

  • Plaintiffs will file a First Amended Complaint (“FAC”) no later than November 15, 2021;
  • Defendants will file a response to the FAC within 60 days of the filing of the FAC. [Note from Claudia: This will certainly be a motion to dismiss); and
  • Case management conference with judge will be 1/12/2022 at 2:00 pm.

More Disability Testimonies Opposing Massachusetts Assisted Suicide Bill

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On October 1, 2021, the Massachusetts Joint Committee on Public Health held a hearing on An Act relative to end of life options (H. 2381 and S. 1384). We previously featured testimonies this bill to legalize assisted suicide by John B. Kelly, Director of Second Thoughts MA: Disability Rights Advocates against Assisted Suicide and Lindsay Baran, Policy Director, National Council on Independent Living. Below are links to strong additional disability testimonies from national and state advocates.

National

Anita Cameron, Director of Minority Outreach Not Dead Yet
Coleman, President & CEO, Not Dead Yet (BTW, this includes my analysis of the Oregon reported data through 2020)
Anne Sommers, Executive Director, National Council on Disability
Carol Tyson, Government Affairs Liaison, Disability Rights Education & Defense Fund (DREDF)
United Spinal Association Statement

Massachusetts

Pam Daly
Ellen Leigh
Ruthie Poole, President of the Board , M-POWER

Belated News – Lisa Blumberg Powerful Op-Ed Published, But Then Bad CA Bill Signed

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We just learned that Lisa Blumberg’s excellent op-ed about the dangers of California’s assisted suicide expansion bill was published in Inside Sources on September 13. Four months earlier, Marilyn Golden’s op-ed in Capitol Weekly was also published. DREDF as well as Disability Rights California and others worked to oppose SB 380’s reductions in the minimal protections under the state’s assisted suicide law. Unfortunately, SB 380 was signed into law on October 5th. Proponents of assisted suicide laws will continue pushing to dismantle the limited patient safety provisions in these laws, so we encourage readers to read Lisa Blumberg’s newest published article below and prepare for the advocacy needed next.

California Senate Bill 380 – A Deadly Bait and Switch on Assisted Suicide

Posted to Politics September 13, 2021

by Lisa Blumberg

Photo of Lisa Blumberg, head and shoulders shot of a smiling woman with short gray hair and a dark blue blouse seated with a desk of files and books in the background.
Lisa Blumberg

California is on the precipice of expanding its assisted suicide law which will have lethal consequences for many people.

State Senate Bill 380, if enacted, would weaken the few requirements that must be met before a person diagnosed as terminally ill can be prescribed death-inducing drugs under the state’s five-year-old assisted suicide law. This legislative effort is misguided and disturbing, but not surprising. Dr. Diane Meier, a palliative care specialist, has said in regard to legalized assisted suicide, “All the heartfelt adherence to restrictions that are announced when you first get the public to vote in favor of this go up in smoke once the practice is validated.” It is a deadly bait and switch.

The bill would reduce the minimum waiting period between a patient’s required first and second oral request for lethal drugs from 15 days to 48 hours. That would mean a person who is distraught but considered mentally competent by his doctors could make the first oral request on a Monday morning, the second on Wednesday morning, make a written request immediately thereaer and receive and ingest the death- inducing drugs by Wednesday evening. Ironically, the process of receiving and taking a lethal prescription could take less time than for the drugs to work. It has occasionally taken people up to 72 hours to die with the drugs having bad side eects. Reducing the waiting period discounts and indeed mocks the profound, irreversible nature of causing one’s own death.

Oregon data indicate uncontrollable pain is not a primary reason that people request lethal prescriptions. Instead, it is open for psychosocial or existential reasons such as perceived lessening of autonomy or feelings of being a burden. Reducing the minimum timeframe between requests decreases the time for reflection. It increases the likelihood that a decision could be made on impulse, due to a mood swing, at the stray suggestion of another, a rough patch in treatment or the stopping of treatment, a stressor such as the death of a spouse, or a significant practical issue such as a lapse in aide support. There can be any number of triggers for despair that a person may work through if given time.

The argument has been made that the present 15-day timeline is too long because some people die natural deaths before being able to obtain deadly pills. Proponents give no reason why, if someone is so close to death, a non-FDA-approved oral drug cocktail is preferable to palliative care or, at a person’s request, sedation. Moreover, a prognosis of imminent death can simply be wrong. For example, one study found 15 percent of critical care patients thought to be dying survived unexpectedly, even when predicted to die by all medical caretakers.

One of the large unanswered questions is, of course, how can a person’s competency and the informed and voluntary nature of his decision be determined if the timelines are so short and the person so ill.

Moreover, while the public sees assisted suicide as applying to long-term conditions like cancer and heart disease at terminal stages, shortening the process could cause assisted suicide to be seen as applicable to critical conditions that arise suddenly or traumatically such as major wounds, burns or raging infections and, indeed, self-inflicted injuries. The possible implications of fast-tracking assisted suicide do not appear to have been considered.

Groups that support Senate Bill 380 owe it to society to be candid about why they think the present law needs to be expanded. Do they now promote assisted suicide as a principal alternative to the difficulties of progressive illness rather than the course of last resort that they once portrayed it to be?

California opened up Pandora’s Box by legalizing assisted suicide. Senate Bill 380 would fling it wide.

About the Author

Lisa Blumberg is a lawyer, writer, and disability rights activist. She wrote this for InsideSources.com.

Nat’l Council on Independent Living’s Policy Director Testifies Against Massachusetts Bill

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Joint Committee on Public Health Public Hearing: End of Life Options – Submitted by Lindsay Baran

October 1, 2021

I would like to thank you for the opportunity to testify today. My name is Lindsay Baran, and I work as the Policy Director for the National Council on Independent Living (NCIL), a national cross-disability, grassroots organization run by and for people with disabilities. We stand with many other national and Massachusetts-based disability rights organizations in opposing An Act relative to end of life options (H. 2381 and S. 1384).

The disability rights community has long believed physician assisted suicide laws pose grave risks to disabled people. For people experiencing terminal illness, disability almost always accompanies that process, and the resulting functional losses become pivotal in the decision-making process. Disability is an inextricable piece of this conversation.

There’s a whole list of reasons why we oppose assisted suicide. What I’d like to briefly address today is the significant risk of abuse disabled folks face when assisted suicide is legal. Disabled people and older adults are at much higher risk of abuse, coercion, and exploitation. All these risks are heightened in the face of assisted suicide being legalized, and the safeguards people claim exist are truly insufficient when it comes to protecting people who are already vulnerable.

While proponents of legalizing assisted suicide claim safeguards will prevent abuse from occurring, the truth is these safeguards are incredibly ineffective. When coupled with problematic monitoring and a lack of meaningful oversight and enforcement mechanisms, they may as well be nonexistent. Proponents will tell you abuse of these laws are rare, but the truth of the matter is, this system was not set up to find them.

In Oregon, for instance, when concerns about abuses were raised, Dr. Katrina Hedberg of their Department of Human Services said: “We are not given the resources to investigate.” And not only that – she added “not only do we not have the resources to do it, but we do not have any legal authority to insert ourselves.”[1]

Abuse of disabled people and older adults was on the rise before the COVID-19 pandemic, and it has increased even more since. If assisted suicide becomes legal, an heir, an abusive caregiver, anyone can steer someone toward assisted suicide. They can serve as one of the witnesses to the request. They can pick up the lethal dose. They can administer the drug. Who would know? No witnesses are required at the death, and with no resources or authority to investigate concerns – and therefore, no real safeguards – there are no real protections in place.

Assisted suicide is often hailed as strengthening autonomy and increasing people’s choices. That is a beautiful ideal. But when people facing terminal diagnoses face emotional or financial pressures from family or caregivers – or worse – that does not reflect the unfortunate reality.

I urge you to listen to our concerns and the concerns of your own disabled constituents. Where assisted suicide is legal, there is no doubt that some people’s lives will be ended by coercion and abuse. We’ve seen it happen. It will happen again. And until we can be sure that it won’t, assisted suicide laws are dangerous for disabled people, and they’re bad for the Commonwealth of Massachusetts.

[1] https://dredf.org/wp-content/uploads/2012/08/Oregon-DHS.pdf