The Law and Politics of Life and Death: AIDS, COVID, and Abortion

Guest Blogger

For the Balkinization Symposium on Death and Legal Scholarship

Aziza Ahmed

How we gather and mobilize data has consequences for the material distribution of resources, including access to health services. Legal anthropologist Sally Engle Merry names a similar phenomenon in article Measuring the World: Indicators, Human Rights, and Global Governance in which she describes the power of indicators to produce and construct the knowledge that we then use to govern the world. In her beautiful forthcoming article, An Uncountable Casualty: Ruminations on the Social Life of Numbers, Mary Dudziak similarly describes the power of statistics in service of a political projects.

The power of the knowledge/governance effect, the importance of being counted and known, been a central theme in my work on AIDS, COVID, and abortion.

In my forthcoming book,  Feminism’s Medicine: Law, Science, and Social Movements in the AIDS Response, I tell the story of how women in the 1980s and 1990s, invisible to public health researchers, demanded that they be counted among people living and dying with AIDS. Many of these women were Black and Latina, and many from Bedford Women’s Prison in New York. They fought to demand that the CDC alter the definition of AIDS being used at the time (the late 1980s), which did not include gynecological illnesses. If the definition did include gynecological illnesses they would be able to access social security disability benefits which were presumptively given to people then living with AIDS.

A woman named Katrina Haslip is an instrumental person in the fight to change the CDC definition of AIDS. A former sex worker, Black, Muslim, and in prison, she became a leader in this struggle.  But her story, unlike many of the others I am writing about, is written largely from secondary sources and interviews of people who knew her. Like many of the other Black and Latina women whose stories I hoped to find and tell, as well as the women of the third world, they are dead. Their deaths are not necessarily recorded as AIDS deaths. In other words, their deaths nearly erased them from the record on AIDS – it us up to scholars and historians to resurrect their memory for action. (Here I have drawn great inspiration from the work of Sadiya Haartman in thinking about Black women in the archive).  

The CDC pushed back against activist demands to expand the definition of AIDS. They argued that it was too risky to expand the definition of AIDS, because the vast numbers of people suspected to have HIV that would need services would crash the system. For feminists crashing the system was worth the recognition that women were dying also, acknowledgement of their deaths, and the attempt to alleviate their sickness.   

As our current pandemic teaches us, systems can crash. This is to be expected from a public health system that has been gutted through chronic underfunding of public health systems. As with prior pandemics, data collection immediately became an issue which revealed the struggling public health infrastructure. Who was actually getting sick and dying? It turned out we didn’t know. Issues with COVID testing and reporting led to skewed data on COVID, and data was often not disaggregated based on race and gender.    

New organizations, including Data for Black Lives and Black Lives Matter, called out public health entities for failing to account for numbers of people of color, particularly Black and Latino, impacted and a response that ignored structural concerns and a failure to collect the relevant data. This data could drive better policy decisions. Black Lives Matters sought to highlight the many aspects of life that render an individual more likely to contract the coronavirus from being an essential worker to having a pre-existing health condition often more present in the lives of Black people. “We are the essential workers who keep the country going; we are the mail carriers, delivery personnel, transportation providers, and hospital workers. We cannot just #stayhome.   

The politics of death and dying aren’t only a feature of pandemics.  Abortion access continues to be a public health crises as laws including Texas law SB8 – which bans a person from seeking an abortion 6 weeks after their last menstrual period – make abortion essentially unavailable to most women in the state.  In Whole Women’s Health and June Medical, which found laws targeting abortion providers to be unconstitutional, the Supreme Court which once seem swayed by data suggesting that lack of access to abortion would harm women’s lives, seems no longer concerned about reality. 

Outside of the United States, in legal jurisdictions that prioritize the fetus over the pregnant person, like SB8, it was a woman’s death, sometimes two or three that finally inspired change. One example is Ireland, in which Savita Halappanvar was left dying as she became septic because a fetal cardiac activity was detected and the hospital refused to intervene. Her death inspired a national movement that led to the liberalization of abortion laws.  We already see a similar abdication of duty towards women in Texas as physicians face decisions about prioritizing an unviable fetus over a woman’s life and health.

How many deaths and how much mortality and morbidity will it take to sway the political atmosphere on abortion? Will those deaths even be counted in the register of lives taken and harmed by restrictive abortion laws? From the cost-benefit analysis that will certainly be mobilized to decide if the mortality and morbidity of abortion are worth it, what will the benefits be?

We don’t have the answers to these questions, yet. But for now, with abortion rights hanging in the balance, and a pandemic raging, the Supreme Court seems willing to entertain the possibility that no amount of death and dying will matter.