From the AIDS Crisis to MMIWG2S: How Society Dictates Who Deserves a Good Death

            “Who is more likely to access a good death? Who is more likely to face a bad death? While tragic accidents tend to be great equalizers, we cannot make whole a death positive movement without addressing how privilege grants likelier access to a good death and how oppression can position someone more likely to face a bad death" (Rich, M. 2016). An individual’s socioeconomic class is one of the most significant factors in determining the quality of their end-of-life experience. Access to the level of care my mom, Ana Paula Southwick, had during her hospice treatment and the ability to make informed choices about death are privileges. Privileges are for people with financial stability, comprehensive healthcare, strong social support networks, and/or those who live in states with strong public healthcare as we have here in Washington state with Apple health. In contrast, marginalized communities—those experiencing poverty, homelessness, racial/ethnic discrimination, or lack of adequate medical coverage—are more likely to face a “bad death,” characterized by various forms of institutional neglect. If there is to be a death-positive movement that aims to create a world for all to have the right to a good death, then racial and socioeconomic disparities must be critically examined. At this point in time, “good deaths” are privileges, not rights, reserved only for the socioeconomically fortunate.

“The condition of black life is one of mourning” (Rankine 2015). This quote profoundly resonates with the ongoing sorrow suffered by black communities. It succinctly highlights the reality that black Americans are disproportionately murdered because of their racial background. Within the first two pages of Rankine’s text, there are four harrowing examples of racial violence against black Americans leading to terrible deaths. “…for African American families, this living in a state of mourning and fear remains commonplace” (Rankine 2015). This systematic racial violence extends beyond individual cases; it is ingrained in American history and institutions. black mothers with sons experience the most anguish of knowing their children’s lives are at risk regardless of how they raise them. “Years after his birth, whenever her son steps out of their home, her status as the mother of a living human being remains as precarious as ever” (Rankine 2015). The condition of black life in America is shaped by an intersection of grief, injustice, and systemic neglect. A true death-positive movement cannot ignore these disparities. If dignity in death is to be a right rather than a privilege, then the conversation must include the structural racism that continuously denies black Americans access to a "good death."

“Where do you go to grieve when someone you love is missing? How do you mourn for someone stolen away, whose disappearance or murder has gone un- or under-reported, has not been solved, and whose murderer has gone unpunished? These questions have been faced by thousands of indigenous people across North America during the decades-long crisis of Missing and Murdered Indigenous Women, Girls and Two Spirit people (MMIWG2S)” (Weiss 2021). The MMIWG2S crisis is difficult to document, and it is for that reason that the problem exists in the first place. Large-scale neglect by governments, law enforcement, and minimal media coverage are to blame. “…the Sovereign Bodies Institute, which runs a database of MMIWG2S, estimates 4000 indigenous women, girls and two spirit people have gone missing or been murdered since 1900” (Weiss 2021). Unfortunately, given the systemic neglect surrounding this crisis, this figure is thought to be a severe underestimation. This can be seen as an act of genocide through neglect. How can people have a “good death” when no one knows what happened to them? A truly death-positive society must confront these injustices and demand not only accountability but also spaces for indigenous grief, healing, and remembrance.

The story of Ruth Coker Burks sheds light on how historic prejudice shaped the way HIV/AIDS victims were treated and how one person intervening for a positive change can make a world of difference. She provided solace and peace to those suffering from the disease. “In all, Burks buried 43 bodies in Files Cemetery, her family’s cemetery that she inherited from her mother, a class privilege that allowed her, in some way, to do the work she did because ownership of a burial ground became critical to the work she performed” (Cook, 2019). Burks's work did not just involve burying the dead; she actively cared for the living. She sat with patients in their final moments, picked up medications that pharmacies hesitated to provide, and offered them human touch. She opted not to wear latex gloves at a time when even medical professionals feared them. She saw them as people, not pariahs. Her compassion allowed AIDS patients to experience a level of peace that was otherwise denied to them. "Her patients lived two years longer than the national average" (Cook, 2019), a testament to how radical love and care could defy institutional abandonment. Burks's work challenges who gets to have a "good death." If a person’s final moments are characterized by a universal shunning by family and medical professionals, what does that say about our values? The HIV/AIDS crisis revealed that a "good death" was a privilege denied to those whom society deemed disposable. Death positivity, if it is to be truly inclusive, must reckon with how stigma continues to dictate the conditions of dying, even today.

It is only by addressing systems that grant "good deaths" to certain individuals while denying others equal treatment that a society can really be death-positive. From black families mourning in the aftermath of systemic racial brutality to indigenous communities searching for loved ones while simultaneously dealing with institutional neglect to AIDS patients turned down by hospitals and funeral homes, each is an example of how marginalization, stigma, and underprivilege dictate whether an individual has a "good death." Another way to have a good death is to live in a state that has a strong public healthcare system, and you qualify for that public health system. My mom, Ana Paula Southwick had a good death in 2023 because she had a strong social network which helped her register and qualify for the public health system which then supported her hospice care in Washington State. The previous examples show that to have a “good death” is not simply about accessing ritualistic practices or medical professionals—it is contingent upon someone’s life being valued to deserve compassion in the first place. If making certain that no one dies in fear, neglect, or shame is to be achieved, structural inequality must be dismantled—and radical care and advocacy must be practiced for everybody. Only by recognizing these differences can death positivity be turned from an ideal to an accessible reality.

References

Cook, J. Aug. 25, 2019. A Cemetery Angel and the American HIV/AIDS crisis. The Collective

for Radical Death Studies. https://www.radicaldeathstudies.com/blog/2019/08/25/a-cemetery-angel-and-the-american-hiv-aids-crisisLinks to an external site.

Rich, M. Nov. 27, 2016. “The privilege of a good death.” Death & the Maiden.

Rankine, Claudia. June 22, 2015. The condition of black life is one of Mourning. The New York

Times Magazine.

Weiss, S. Nov. 14, 2021. Unbreakable Connections: Memorial Art & Missing and Murdered

Indigenous Women, Girls, and Two-spirit people. The Collective for Radical Death Studies.