It’s ironic that Joel Freedman’s Aug. 14 essay promoting assisted suicide laws opens by noting the need to “strengthen the rights of nursing home residents and other care-dependent people.” People are too often dumped into nursing facilities by hospitals and sometimes, sadly, by families, never to escape again, their choices taken away.
Yet Freedman’s article ignores that reality and claims that assisted suicide laws only operate in the context of individuals who can count on the privileges of loving families, covered healthcare treatments, and quality palliative care.
I’m a disabled person who uses a breathing mask and motorized wheelchair and just turned 70. I’m still working, partly to pay for the uncovered care I need. I know two individuals, both African American women, who dealt with severe pain for at least two years before doctors were forced to recognize their mistakes and take steps to address the damage done.
Studies on healthcare disparities demonstrate that the system cannot be trusted to provide equal treatments without regard to race, disability, or age. More specifically in the context of assisted suicide laws, doctors cannot reliably predict how long we have to live, nor are they privy to the family pressures to “get on with it” that may arise behind closed doors.
Doctors are gifted to be able to save lives, but there are too many failures and economic pressures in the healthcare system to add assisted suicide to the treatment list.
NDY joins disability advocates in California and across the country in mourning the loss of disability rights activist and leader Lillibeth Navarro. The times I shared with Lillibeth are a treasured part of my life history. Remembering how deeply she touched people’s lives, I know that many would say the same thing.
Our story together began in 1987 when I returned to Los Angeles from my first national ADAPT action for accessible public transportation and decided to start an ADAPT chapter. Lillibeth was one of the first to join. Along with disability movement photographer Tom Olin, we rode in my van picking up fellow activists for meetings and protests, including the fall 1987 national ADAPT action in San Francisco. (I believe this action resulted in her first civil rights arrest.)
Lillibeth Navarro arrested during protest (Photo by Tom Olin)
By next spring, Lillibeth helped organize a group of ten disabled people to join the national ADAPT action and carry our demands for accessibility to a North American transit conference being held in Montreal.
Our Los Angeles chapter also pushed the accessibility envelope at home, with street theater to get curb cuts on Hollywood’s Walk of Fame (aka “Walk of Shame”) and at least two arrest actions, one involving a sit-in at the Governor’s Office and one a protest at the Greyhound depot, among others. By the spring of 1989 when I left L.A., Lillibeth took over leadership of ADAPT Southern California.
Lillibeth Navarro leads protest march (Photo by Tom Olin)
As Executive Director of the CALIF center for independent living she founded, many came to Lillibeth for help in their struggles for equal rights and opportunities. A short video interview when she was honored as a Filipino Champion captures some of her gentle but firm style as an educator and advocate for change.
Those who live in California know more about her work that followed than I do, as the many tributes show. (See, e.g., Disability Rights CA) Attorney Michael Allen who worked with Lillibeth on an important housing case posted this tribute on a legal listserv:
Lillibeth Navarro: Disability Community Leader and Hero Passes Away
Lillibeth Navarro, the founding director of CALIF, died yesterday after a short illness. In many ways, she was the heart and soul of the “LA 504” housing accessibility case litigated by my firm, Disability Rights California, Disability Rights Legal Center and David Geffen. Lillibeth spent the last 30+ years insisting on community integration for people with disabilities in all aspects of life. The world is a better place for all of us because of her work….
Over the last decade, Lillibeth became part of my life again as she advocated against a public policy of assisted suicide, helping to communicate the real dangers of this policy to the disability community and the broader public. Like so many people with disabilities, Lillibeth saw and experienced healthcare disparities impacting members of BIPOC and disability communities, disparities that belie the empty platitudes about “safeguards” in assisted suicide laws.
She organized a protest against the Hollywood film “Million Dollar Baby” due to its assisted suicide theme. She fought alongside DREDF’s Marilyn Golden to oppose passage of the CA assisted suicide law and spoke movingly at a Sacramento rally focused on the dangers to people with disabilities.
Lillibeth and Marilyn 9-24-15 onstage
Lillibeth helped educate her community about this issue in myriad ways, such as organizing a multi-issue advocacy seminar and inviting me to speak. And she led CALIF to become part of an important lawsuit challenging the disability discrimination inherent in assisted suicide laws. She appeared in a powerful video about the case that was launched today.
Lillibeth’s incredibly warm and generous heart touched and changed so many lives, individually and as a result of her commitment to justice and tenacious advocacy. I’m so grateful for the times we shared and join her family, friends, dedicated staff and all her communities in mourning her loss and celebrating her beautiful life.
Today’s Newsweek features a terrific opinion piece by disability advocate and attorney Lisa Blumberg! Here’s a photo, excerpt and link to the whole article:
This summer, disability rights advocates sued California over its so-called End of Life Options Act. Under this 2016 law, assisted suicide is available to persons deemed terminally ill with less than six months to live. But, as argued in the lawsuit, the act violates the legal rights of disabled Californians and worsens the dehumanization they already face.
California residents Lonnie VanHook and Ingrid Tischer know the problem firsthand. VanHook and Tischer have significant disabilities that would be fatal without medical management. Both have struggled to get medical care and in-home support. They believe they have encountered discrimination in hospitals due to their disabilities, and in VanHook’s case, also for being Black. Both have heard suggestions that their quality of life is unacceptable. Tischer describes a doctor’s refusal to get her into rehabilitation after pneumonia as a “solid gut punch.” Both have had bouts of depression, anxiety and thoughts of ending it all. They are fearful that if they become suicidal, they will not be given the suicide prevention services available to the general California public but instead be approved for a lethal drug prescription.
Amid existing health care disparities, assisted suicide, although ostensibly voluntary, imperils the ill and disabled. A law enabling it is discriminatory because it carves out an arbitrary health-related exception to the state’s policy of deterring suicide attempts. Four disability rights groups have joined VanHook and Tischer in filing a federal lawsuit alleging that California’s End of Life Option Act violates the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and the equal protection and due process clauses of the 14th Amendment of the U.S. Constitution.
Yesterday (Sept. 7) Delaware’s Daily State News published an opinion piece by the Chair of the State Council for Persons with Disabilities who is also the parent of a person with developmental disabilities. In the article, Terri Hancharick stated in part:
Delaware’s assisted suicide bill is based on legislation in Oregon, where assisted suicide was first legalized. Data from Oregon provides insight into the top reasons that patients ask for assisted suicide. The top five reasons that people gave were the loss of autonomy, being unable to participate in activities that make life enjoyable, loss of dignity, loss of bodily functions and becoming a burden on family, friends and caregivers. These reasons are all disability-related. Contrary to popular belief, pain does not even make it into the top reasons people give to justify their application for assisted suicide.
These disability-related concerns are similar to the concerns that my daughter and other Delawareans with disabilities face daily ….and deserve appropriate multidisciplinary care — but they are not worth seeking death as an alternative. Legalized assisted suicide devalues the life of my daughter and her peers, and it simply sends the wrong message to the disability community, that they are better off dead than disabled.
As written in testimony by the Autistic Self Advocacy Network, “When people are offered the option of suicide but not the option of affordable home care, they do not have any meaningful choice. People with significant disabilities due to illness should not have to die to have dignity.”
Because there are no safeguards against social and medical bigotry toward people with significant disabilities, assisted suicide is simply too dangerous….
NDY’s Director of Minority Outreach Anita Cameron was interviewed on The Laura Flanders Show, a news and public affairs show on PBS. In this clip, Anita discusses the dangers of assisted suicide and the CA court case in which NDY is a plaintiff.
Transcript
Anita Cameron: The real danger to people with disabilities now is this doctor-assisted suicide, assisted suicide, physician-assisted suicide, medical aid, or whatever you wanna call it. That is what presents a danger to disabled people and other marginalized communities.
Laura Flanders: Your organization, Not Dead Yet, is currently a plaintiff in a case in California involving what you just mentioned. Why, and what’s your argument?
Anita: Our argument is that assisted suicide in this case is like I say, in California, so it’s referring to a California case, but I certainly feel it in a global way, that assisted suicide laws violate the Americans with Disabilities Act because it sets up a two-tiered system, it’s inherently discriminatory.
Laura: For people that aren’t familiar with the language of the text, can you just explain what you mean?
Anita: So, assisted suicide is supposed to be for people who are terminal, with six months or less to live. Doctors often make mistakes about that. Then what ends up happening is you get your terminal diagnosis. Remember, terminal people are a subset of the disability community, you know what I mean? So people with terminal conditions who even themselves may not consider themselves disabled, are protected under the Americans with Disabilities Act because usually when you’re terminal, you are needing help with three or more activities of daily living, and so they’re protected. There was a study in 2021, a Harvard study, a survey if you will, that showed that about 82% of the doctors that they surveyed felt that people with disabilities had a lower quality of life or lesser quality of life than non-disabled people. And so what happens is you combine that with the doctor’s biases, disability discrimination that happens, a doctor’s gonna be more apt to write you out or maybe even try to convince you that this is a good thing. Because if you’re given terminal diagnosis, it’s gonna be normal to be depressed, and so what do you do? You get mental health treatment. People with disabilities, we already have limited access to that. And then when you rationalize this, people think, oh, well it’s normal that you would be depressed because of your disability. We have this better dead than disabled fate.
