Excerpt: Holding On

The following is an excerpt from Holding On: African American Women Surviving HIV/AIDS (June 2016) by Alyson O’Daniel. 

Hidden in Plain Sight

In 2009 I sat with Lady E. in an HIV/AIDS service organization’s conference room as she described a recent relapse in her recovery from drug addiction. Her hands shook as we talked, perhaps as a result of withdrawal but certainly as an effect of the fear she felt concerning her health and well-being. “I lost my apartment and missed my opportunity for Section 8. I smoked up all of my Social Security back pay. I was smoking day and night. I was defecating and vomiting. I had smoked so much quality cocaine that it had stripped the membranes in my mouth. So I couldn’t eat. My throat didn’t work. I went nine days with no food. I could put the food in my mouth and chew it up, but I didn’t have enough juices to swallow it. I know all of this was because I was having a pity party.”

As Lady E. recounted the details of her two-week crack binge, I began to wonder how a woman so intimately connected to the local system of public health care could slip through the cracks as quickly as she did. I wondered, too, what it meant that Lady E. considered her relapse as a personal failure. After spending more than a year in the low-income communities of Midway, North Carolina, I knew well the strategies that drug dealers used when looking to hold their consumers captive. Offering a “free taste” had proven particularly effective for sabotaging an overstressed and underserved HIV-positive woman’s recovery plans. I also knew that Section 8 housing was indeed a scarce resource that many women, whose daily life realities were incompatible with policy-mandated eligibility procedures, lost. Still I was surprised that Lady E. had stumbled on what she described as “the path to wellness.”

Over the course of sixteen months, Lady E. had made dramatic changes to her life with the help of newly defined, federally funded HIV/AIDS care and related US Department of Health and Human Services programs. In the fall of 2007 local care programs began implementing new policy pronouncements associated with the 2006 Treatment Modernization Act (TMA). Increased funding for the state of North Carolina had translated into a slate of new programmatic services and information-sharing networks aimed at meeting the “comprehensive and intensive” needs of HIV-positive individuals. Like all of the women in this study, Lady E. was quickly integrated into a burgeoning system of care. She began attending daily substance abuse support classes, was enrolled and participated in mental health services, saw an internal medicine physician regularly, utilized nonmedical case management services, and frequently drew from the myriad financial and in-kind resources available at Health Partnership, the local federally funded HIV/AIDS service organization in Midway. With the help of these new health care programs, she saw steady improvements in her health, including her HIV disease, diabetes, and symptoms of heart disease. When I last left Midway in November 2008, Lady E. was well on her way to realizing her goals of long-term sobriety, Section 8 housing, and improved quality of life. Not seven months later, she had again hit “rock bottom.” All one could do, Lady E. later told me, was to “survive by holding on to the truth of your life.”

Lady E. often talked about the truth of life as though it were self-evident. She once told me in a conversation about women and aids, “This is the truth of your life: take the medication or don’t.” Initially I thought the meaning of her statement was simple. Her “truth,” as I understood it, ultimately lay in recognizing her potential vulnerability to HIV-related mortality. It wasn’t until much later that I realized the truth also referred to a need to demonstrate personal responsibility for health in a cultural context fraught with concerns over deservedness and moral belonging. Public HIV/AIDS care use, to put it bluntly, had become enmeshed with moral values and sentiments prioritizing individualism, self-help, and self-sufficiency. I soon learned that the truth involved with deciding to “take the medicine or don’t” referred to processes of blame and conditions of survival much broader than the scope of an individual woman’s mortality. In that statement Lady E. had laid bare for me an unarticulated social site structuring the lives of HIV-positive African American women using federally funded HIV/AIDS care services. No longer a cultural construction “hidden in plain sight” (Di Leonardo 1998, 10; Martin 2012, 25), survival suddenly seemed open for exploration as a paradoxical and historically contingent process wherein cultural and political economic forces met.