In this exclusive excerpt from DAME contributor Marcie Bianco's 'Breaking Free,' the author makes the case that a freedom-centered feminism includes death with dignity.
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“There must be some way to integrate death into living,” Audre Lorde wrote in a 1979 diary entry later published in The Cancer Journals. “Once I accept the existence of dying, as a life process, who can ever have power over me again?”
Death with dignity is the freedom to choose death with the care and compassion one needs to determine the end of one’s life—as Lorde said, as a part of life. Not everyone, of course, has the ability or opportunity to make this decision. A freedom-centered feminism includes death with dignity as a feminist issue, connected to values of care, accountability, and self-creation.
For Lorde, this issue is particularly relevant to the Black community and other racially marginalized communities in the United States that historically have had little to no say in their deaths. “Even in the face of our own deaths and dignity,” she observed, “we are not allowed to define our needs nor our feelings nor our lives.” In the context of the systemic dehumanization of Black people, then, Lorde found something liberating in being able to have agency in her cancer experience, being able to encounter death on her own terms—rather than, say, at the hands of the police or another racist with a gun.
In addition, the American healthcare system is an injustice unto itself. In our capitalist society, our healthcare and access depend not on the government but on the private sector. Our health insurance is tied to our employer. And even if you have insurance, you can be denied life-saving treatments and/or social security if your illness or disability doesn’t qualify for coverage. So let me be abundantly clear: The freedom to choose death is systemically restricted, mired in spiteful bureaucracy, such that the health care many of us can access and afford not only does not improve our health but actually contributes to our decline and untimely death. The choice of death is one most of us do not have—rather, the healthcare system decides for us.
This is especially true for people with disabilities, who encounter a healthcare system rife with ableist prejudices that negatively affect their medical treatment and care. Research by disability ethics scholar Heidi Janz published in 2019 documented health care professionals’ biases, primarily about disabled people’s mental competency. This particular bias, Janz observed, leads them to significantly underestimate the quality of life of people with disabilities, which can “result in treatment options for people with disabilities being either limited, or altogether eliminated.”
To choose death with dignity is the final act of our self-creation.
Understanding death as a part of life informs our critical consciousness about our situatedness and how we choose to hold ourselves accountable to ourselves and others. Lorde reflected upon how this consciousness influenced her ethics:
“Living a self-conscious life, under the pressure of time, I work with the consciousness of death at my shoulder, not constantly, but often enough to leave a mark upon all my life’s decisions and actions. And it does not matter whether this death comes next week or thirty years from now; this consciousness gives my life another breath. It helps me shape the words I speak, the ways I love, my politic of action, the strength of my vision and purpose, the depth of my appreciation of living.”
With finite time in this life, how do you choose to live it? For Lorde, this consciousness inspired what she referred to as living a “considered life”—to live deliberately, much like Thoreau said, “to front only the essential facts of life … to live deep and suck out all the marrow of life.”
One doesn’t necessarily need to live in the woods like Thoreau to cultivate such a considered life. Yet to live with consideration means to make choices from a standpoint of care and accountability. It means that, even though we don’t all have the same ability to determine when or how we die, we incorporate discussions about how to approach death into our feminist politics.
Such discussions have been absent from mainstream culture until fairly recently. The media and cultural visibility of death with dignity has increased with the rise of the death positive movement: books like Atul Gawande’s Being Mortal: Medicine and What Matters in the End and Katie Engelhart’s The Inevitable: Dispatches on the Right to Die; documentaries like Ondi Timoner’s Last Flight Home; and, during the height of the COVID-19 pandemic, the rising demand for death educators like the late Shatzi Weisberger, who taught the art of dying, and death doulas, who help people and their loved ones go through this inescapable life transition.
A memorable storyline in season 2 of Grace and Frankie, in 2016, brought the issue to my attention. Grace and Frankie’s friend, Babe, asks them to assist her with suicide after a party celebrating her life. Babe’s cancer, she has just learned, has returned and is terminal. Grace vehemently opposes Babe’s plans and refuses to help her. “It’s not her choice to make!” she tells Frankie, adding that “only God can make that decision.”
Frankie, however, responds from a place of care and respect for Babe’s freedom to determine the course of her own life: “Of course it is. Her life. Her death. Her choice … If Babe wants to end her life tonight, then, yes, I would help her. I will help her do anything that supports her decision.”
As someone who has panic attacks when thinking about death (my own death and the death of the sun and universe), I understand how uncomfortable these conversations can be, because they force us to confront our mortality and consider the meaning of life. “The intensity of it, the mystery, all of the unknowns,” Francesca Arnoldy, the lead instructor of the University of Vermont’s End-of-Life program told the New York Times. “You have to relinquish your sense of control and agenda and ride it out.”
However, in the United States we lack a caring culture of death—indeed, we still have not collectively processed the million-plus deaths caused by the coronavirus. Instead, we charge ahead with a puritanical Protestant ethic of productivity, growth, and wealth accumulation—no matter the consequence, no matter the destruction or harm we inflict. Mark Zuckerberg’s tossed-off line—“move fast and break things”—has become the mantra of Silicon Valley and beyond. In many ways, capitalism denies us the ability to think about death while driving us to death.
Yet, it is only by having conversations about death and building a culture of death that we can begin to imagine ways to provide and practice the care people need to die with dignity and help their loved ones live through and after their deaths. (The fact is that we cannot grieve our own death because we do not live through it—only our loved ones do.) And our collective, continued failure as a society to discuss death as a process of life has foreclosed our ability to radically reconceive care, and health care specifically, in ways that honor our personal dignity and facilitate collective justice.
According to the nonprofit, Order of the Good Death, this is what the death positive movement strives for: “Death positive means you should be given support during and after a death, including the ability to speak freely about your grief and experiences [to] push back and engage with systems and conditions that lead to ‘unacceptable’ deaths resulting from violence, a lack of access to care, etc.”—again, dying is not an equal experience.
Founded by mortician Caitlin Doughty in 2011, the Order is part of the movement to “[shift] our cultural and national beliefs surrounding death” to allow us to cultivate “a good end of life”—not simply for the dying but for “those affected by it.”
Despite a 2018 Gallup poll finding that 72 percent of Americans support physician-assisted suicide, as of 2022, only ten states and Washington, D.C., legally allow it. However, to be eligible for physician-assisted suicide in most of these jurisdictions, a physician must certify that a person is terminally ill with no more than six months to live, and that person must reside in one of these states (or DC) and be able to express both verbally and in writing the desire to die to two local doctors. The exact legal parameters vary per state, with some states even demanding that people must be physically capable of administering and ingesting the medication that ends their life. These requirements indicate that the right to die with dignity is less accessible than it appears—as writer Amy Bloom and her husband, Brian, realized shortly after his Alzheimer’s diagnosis, which she chronicled in her memoir, In Love. “People who wish to end their lives and shorten their period of great suffering and loss—those people are out of luck in the United States of America,” Bloom wrote. Within a week, Brian knew “the long good-bye of Alzheimer’s was not for him,” and, soon after that decision, they found “the only place in the world for painless, peaceful, and legal suicide, Dignitas, in the suburbs of Zurich.”
Death with dignity demonstrates how death—and choice, more generally—is never an individual issue, despite it feeling so singular. As the final act of care, it is a collective choice. The story of Brittany Maynard, who was 29 years old when she decided to end her life after being diagnosed with an aggressive type of terminal brain cancer, shows us how feminism can claim this issue as integral to our freedom.
“I am dying, and I refuse to lose my dignity. I refuse to subject myself and my family to purposeless, prolonged pain and suffering at the hands of an incurable disease,” Maynard stated. “Knowing that I can leave this life with dignity allows me to focus on living. It has provided me enormous peace of mind.” She recorded this statement in a video message for California lawmakers just eighteen days prior to taking legal medication that ended her life on November 1, 2014, in Portland, Oregon—one of only five states at the time with legal physician-assisted death laws. At the time, death with dignity was not a legal option in her home state of California. Her story received nationwide media attention, and her message had an impact. California passed its End of Life Option Act in September 2015, and it went into effect the following June.
In several blogs, videos, and op-eds, Maynard repeated her message, emphasizing that choosing death was an assertion of her bodily autonomy and a choice made not only for herself but for her loved ones as well.
The choice, echoing the sentiments of Lorde, was made from a place of considered care. If oppression is the lack of choice, then freedom is the ability to make choices, no matter whether we avail ourselves of them or not. The power that comes from self-sovereignty, the feeling of authority over one’s life, comes from taking ownership of our choices and holding ourselves accountable for them. This expression of freedom is as true for abortion as it is for death. Maynard described these exact feelings in her writings. There is always a choice, no matter how situated one’s life is.
Maynard’s knowledge of this filled her with a feeling of power from a powerless place. “I have been in charge of this choice, gaining control of a terrifying terminal disease through the application of my own humane logic,” she wrote in an October 2014 blog post. And in an opinion piece for CNN, she asked, “Who has the right to tell me that I don’t deserve this choice? That I deserve to suffer for weeks or months in tremendous amounts of physical and emotional pain? Why should anyone have the right to make that choice for me?” As Maynard said in a YouTube video released that month, “The worst thing that could happen to me is that I wait too long because I’m trying to seize each day, but that I somehow have my autonomy taken away from me by my disease.”
Maynard further elaborated on the feelings of strength and solace she got from the knowledge that her choice would also mitigate her family’s suffering by shortening the length of time they would have to witness her body deteriorating from the cancer. She believed to force herself to continue living would otherwise be irresponsible and cruel.
“Because the rest of my body is young and healthy, I am likely to physically hang on for a long time even though cancer is eating my mind,” she explained. “I probably would have suffered in hospice care for weeks or even months. And my family would have had to watch that. I quickly decided that death with dignity was the best option for me and my family.”
In this way, Maynard recast what has long been stigmatized as a selfish act as a selfless one. Her choice of death was made from the place of a freedom mindset that situated it within the collective, centered on care.
“Death with dignity is an American healthcare choice,” she said at the conclusion of her statement to lawmakers. “Every one of us will die. We should not have to suffer excruciating pain, shame, or a prolonged dying process … Let the movement begin here, now.”
Excerpted from Breaking Free: The Lie of Equality and the Feminist Fight for Freedom by Marcie Bianco, published September 2023. Available from PublicAffairs, an imprint of Hachette Book Group, Inc.
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