Long COVID, Self-Definition & Structural Accountability: A Call for Black Feminist Data Analytics, part IV
One of Leiah Danielle Jones’s final acts in her relatively short life was to summon the strength to write her own obituary before she passed away. She wrote:
“I, Leiah Danielle Jones, was born on September 22, 1987, in Charlotte, North Carolina to Eric Arnell Jones and Joyce Bost Jones. Waiting (patiently) at home was my elder and only brother, Jonathan Philemon Jones. I departed from my temporary home on March 12, 2021, surrounded by my family. I am waiting for Christ’s return. I was thirty-three and a half (33 1/2) years young.”
Ms. Jones revealed, like over half a million Americans and approximately 84,000 Black people in the United States, she succumbed to COVID. “I died,” she wrote, “due to complications from COVID-19, which none of us knew existed one and a half years ago (2019). I, along with others like me, are termed “long haulers,” people who have not fully recovered from COVID-19 weeks or even months after first experiencing symptoms.
Doctors estimate that roughly 10% of people who have contracted COVID-19 suffer from ongoing symptoms of the disease, which is often described as “Long COVID.” Women disproportionately experience this condition, with Black women, who have come down with COVID and died from the disease in relatively greater numbers, than every other group except Black men, being more likely to become ill. However, Black women increasingly report difficulty in getting doctors to acknowledge their symptoms as valid and manifestations of long COVID. Public health experts and physicians fear that persistent disparities in access to care and treatment will result in people of color, particularly Black Americans, bearing the brunt of long Covid.
Ms. Jones's final words indicated that she fully understood the looming public health crisis that long COVID poses for many Americans. She noted:
“*A YouTube video, on this site, will inform you more explicitly the extent of this virus. Unfortunately, those like me may or may not survive the aftermath. I, hopefully, am in the minority of those numbers. I would love for as many as can to watch the video, and please pray and support the “long haulers”.
Ms. Jones’s decision to include a source on long COVID in her obituary that she urged people to watch demonstrates that Black women’s self-definition is rarely synonymous with simple acts of self-interest. Rather, when Black women speak or write about their own reality, they do so from a collective standpoint in which their selfhood is situated in an ethics of care for a larger community.
Self-Definition and Access to Care
Ms. Jones’s obituary epitomizes the necessary power of “self-definition” in Black women’s effort to be heard and recognized with regard to long COVID and other health conditions. Black feminist, Patricia Hill Collins writes “Self-definition involves challenging the political knowledge-validation process that has resulted in externally-defined, stereotypical images of Afro-American womanhood.” These controlling images often shape perceptions of Black women, increasing the likelihood that they are ignored and dismissed when they express pain and suffering.
Acts of self-definition challenge the denial of Black women’s reality. The case of Dr. Susan Moore, 52, is a case in point. Hospitalized with COVID in the Indiana University (IU)Health system in early December 2020, Dr. Moore posted a video to Facebook on December 4th, charging the hospital with ignoring her pleas to give her medication. Dr. Moore stated, as a Black woman, the burden was on her to prove that she was ill enough to receive relief for her pain. The health system eventually discharged Dr. Moore on December 7th. Approximately two weeks after posting the video, Dr. Moore died of complications from Covid-19.
Despite being gravely ill, Dr. Moore’s final act of self-definition, in the form of a video and a log that she maintained on her symptoms and lack of care, sought to make the health care system accountable for her care and also systemic mistreatment of Black people. Dr. Moore noted in her video account of how the doctor tried to release her late at night, “This is how Black people get killed, when you send them home, and they don’t know how to fight for themselves.” In making this assertion, Dr. Moore’s efforts to define her own experiences within the health care system, are situated in the larger historical framework of medical mistreatment of Black people in the United States health care system.
Like Ms. Jones, Dr. Moore, rather than relying and waiting on doctors to be the sole arbiter of her condition, Dr. Moore determined that she would have the last say and hold the health care system accountable. “I had to talk to somebody…maybe the media..somebody…to let people know how I’m being treated up in this place,” she stated in her Facebook post. Dr. Moore’s statement speaks to the contradiction Black women experience. On one hand, they are perceived as outspoke and assertive, but also make incredible efforts to be heard in a society that denies Black womens’ voices. Collins writes, “When Black women define themselves, they clearly reject the taken-for-granted assumption that those in positions granting them the authority to describe and analyze reality are entitled to do so.”
Although Dr. Moore did not survive COVID, her courageous acts of self-definition, and the widespread outrage her disclosure generated, forced Dennis Murphy, IU Health President, and CEO to respond to her accusations of mistreatment. A subsequent investigation revealed that hospital staff lacked cultural competence in their care of Dr. Moore, though IU denied that it lead to her death. In order to address their failure, the IU health system has committed to training its staff to recognize and address implicit racial bias and incorporate diversity, equity, and inclusion in their praxis of care. Arguably inadequate, IU’s actions are reflective, in part, of the structural accountability Dr. Moore sought by speaking out about the lack of care she received.
Self Definition and Black Feminist Data Analytics
Self-definition is a key element in Black feminist data analytics, processes, tools, and techniques for extracting insights from data through Black women’s standpoints. It fundamentally rejects the idea that those in positions of power and authority have an automatic right and inherent expertise to collect, analyze, and use data to interpret one’s existence. In this sense, Black feminist data analytics calls for structural accountability where the qualifications to collect and analyze data are based less on individual expertise and qualifications (identity and formal education), factors that are largely validated by norms constructed in and by social and political institutions, what Collins describes as the structural domain of power. Instead, Black feminist data analytics is fueled by the power of self-definition. It holds systems and structures accountable to a data praxis that centers and empowers people who are viewed as having less authority to define their own experiences.
Self-service data analytics, an approach increasingly used by businesses to help build a stronger data-driven culture, is one way to integrate self-definition and apply a Black feminist data analytics that provides a basis for structural accountability. Providing greater access to data sources, self-service data analytics allows non-experts opportunities to create their own customized analysis and use data for discovery and decision-making. Its efficacy depends on matching data users’ needs with the right tool for analysis. Thus, listening is essential in self-service data analytics. End-user needs are critical…dismissing them ensures failure.
Listening to users' needs in self-service data analytics makes it particularly conducive to self-definition within Black feminist data analytics. It provides users with data processes and tools to challenge the “eurocentric masculinist knowledge-validation process” that is a central element in many data structures (data organization, management, and storage). In this sense, Black feminist data analytics involves questions such as what is an authoritative source, and how might data be used to make structures and systems actionable and accountable to communities, particularly those of color? Responding to these sorts of questions creates opportunities for self-definition that counters traditional processes of accessing and analyzing data that do not meet the health care needs, for example, of marginalized communities.
We already see efforts to make the health care system accountable through a praxis of self-definition from Black women like Chimére L. Smith, a 38-year-old middle-school teacher from Baltimore. Ms. Smith contracted COVID last spring. Since that time, she has experienced a medley of persistent symptoms that her doctor, after numerous visits, diagnosed as long COVID.
Over the course of her push to be heard, Smith reports having doctors accuse her of being aggressive and even doing drugs, repeatedly. Her interactions with health care workers reflect the perception of the controlling image of Black woman as mean, loud, and hostile, otherwise known as the “angry Black woman.” Nonetheless, Ms. Smith refuses to be silenced, she writes to local politicians, writes reviews about doctors, and uses social media to speak out about the lack of care she received in the healthcare system. “I do believe that it is my responsibility to warn other Black people, especially Black women,” Ms. Smith says. “I’m doing this so that another Black woman who comes after me will not face the same humiliation, the same degradation.” Her deep commitment to other Black women transforms Ms. Smith’s self-definition from an individual act to one that has deep and meaningful potential for structural accountability.
As the CDC prepares to release guidance on how to identify and treat long COVID, health data scientists and health care workers should consider a Black feminist data analytical approach to collecting and analyzing data that incorporates self-definition for structural accountability. Ms. Jones, Dr. Moore, and Ms. Smith’s determination to speak their truth highlight its power to not only restore their humanity from pernicious controlling images but to call out racist structures and make them accountable for redressing historical and contemporary medical mistreatment of Black people and other communities of color. Health care workers’ ability to treat and heal people suffering from long COVID depends, in part, on self-service and Black feminist data analytics, data praxis that relies on close listening and fosters self-definition for action and accountability.
Look for the next essay in this series to learn more about Black feminist data analytics and the value they hold for analyzing health data.
ABOUT THE AUTHOR:
Kim Gallon is the Director and Founder of COVID Black. Learn more about COVID Black by clicking here.