You're the First One I've Told: The Faces of HIV in the Deep South

By Kathryn Whetten-Goldstein and Brian Wells Pence

The Deep South has seen a 36 percent increase in AIDS cases while the rest of the nation has seen a 2 percent decline. Many of the underlying reasons for the disease’s continued spread in the region—ignorance about HIV, reluctance to get tested, non-adherence to treatment protocols, resistance to behavioral changes—remain unaddressed by policymakers.

In this extensively revised second edition, Kathryn Whetten and Brian Wells Pence present a rich discussion of twenty-five ethnographic life stories of people living with HIV in the South. Most importantly, they incorporate research from their recent quantitative study, “Coping with HIV/AIDS in the Southeast” (CHASE), which includes 611 HIV-positive patients from North Carolina, South Carolina, Georgia, Alabama, and Louisiana. This new edition continues to bring the participants’ voices to life while highlighting how the CHASE study confirmed many of the themes that originally emerged from the life histories. This is the first cohesive compilation of up-to-date evidence on the unique and difficult aspects of living with HIV in the Deep South.

• Language: English
• Publisher: Rutgers University Press
• Release date: Mar 15, 2013
• ISBN: 9780813569611

Book preview

You’re the First One I’ve Told

You’re the First One I’ve Told

The Faces of HIV in the Deep South

Second Edition

Kathryn Whetten

Brian Wells Pence

Rutgers University Press

New Brunswick, New Jersey, and London

LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA

Whetten-Goldstein, Kathryn, 1963–

You’re the first one I’ve told : the faces of HIV in the Deep South / Kathryn Whetten, Brian Wells Pence. — 2nd ed.

p. cm.

Includes bibliographical references.

ISBN 978-0-8135-5453-2 (hardcover : alk. paper) — ISBN 978-0-8135-5452-5 (pbk. : alk. paper) — ISBN 978-0-8135-5454-9 (e-book)

1. AIDS (Disease)—Southern States. I. Title.

RA643.84.S68W48 2012

614.5’9939200975—dc232012012093

A British Cataloging-in-Publication record for this book is available from the British Library.

Copyright © 2013 by Kathryn Whetten and Brian Wells Pence

All rights reserved

No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, or by any information storage and retrieval system, without written permission from the publisher. Please contact Rutgers University Press, 106 Somerset Street, 3rd Floor, New Brunswick, NJ 08901. The only exception to this prohibition is fair use as defined by U.S. copyright law.

Visit our website: http://rutgerspress.rutgers.edu

Manufactured in the United States of America

This work is dedicated to the people who shared their lives and hearts with us as case study participants. Their honesty, laughter, and tears have influenced the lives of all who have been involved in this project.

Additionally, this work is dedicated to the case managers and HIV providers who have taught us so much about what it means to care for persons who are HIV positive. Your willingness to share with us made this work possible.

Contents

List of Figures and Tables

Preface to the Second Edition

Acknowledgments

1: Setting the Stage

2: Voices of the Past

3: Enter HIV

4: Abuse, Trauma, and HIV

5: Distrust, Conspiracy, Confidentiality, and Provider Relationships

6: Benefit Systems

7: The Importance of Children

8: Sex, Love, Family, and Other Support

9: Theoretical Framework

10: The Future

Appendix A: Data Collection Methods

Appendix B: Case Study Interview Protocol

Appendix C: List of Traumatic Events Read by Interviewer to Respondent

References

About the Authors

Figures and Tables

Map

1.1 Southern States

Figures

1.1 AIDS Cases in the South as a Percentage of All U.S. AIDS Cases, 1983–2007

1.2 New AIDS Cases per 100,000 Population

4.1 Relationship between Lifetime Traumas and HIV-Medication-Taking Behavior

4.2 Relationship between Lifetime Traumas and Recent Unprotected Sex

9.1 Health Services Utilization and Treatment Adherence

9.2 Determinants of Health Services Utilization and Medication Adherence

9.3 Decision-Making Model of Determinants of Health Services Utilization and Medication Adherence

9.4 Detailed Determinants of Health Services Utilization and Treatment Adherence

Tables

2.1 Demographic Characteristics of Case Study Participants

3.1 HIV Diagnosis

4.1 Traumatic Events in Childhood and Adulthood Experienced by Participants in the CHASE Study

4.2 Stressful Events Experienced by CHASE Participants

6.1 Barriers to Care

6.2 Adherence to Medications

6.3 Number of Doctor Visits in the Past Twelve Months

6.4 Percentage of People in Poverty in 2009

6.5 2009 Health and Human Services Poverty Guidelines

8.1 Social Networks, Social Support, and Social Conflict among CHASE Participants

Preface to the Second Edition

You’re the First One I’ve Told: New Faces of HIV in the Deep South was first published in 2002, with a second printing in 2003. Reviews of the book focused on its powerful use of the ethnographic life stories from twenty-five case studies combined with the qualitative evidence at the time to put into context the lives of many living with HIV in the Deep South. The book explains HIV in the context of individuals’ life histories, beliefs, attitudes, and current life situations. By doing so, it helps us to understand why a person may engage in high-risk activities and may not want to be tested for HIV, engage in HIV medical treatment, or take HIV medications.

We have prepared this second edition in response to what has been learned about the correlates of life events and current health-related behaviors since the book was first written. Much of the new information has reinforced the relevance of the case studies presented in the first edition of the book. The new scientific findings help us to further understand how events like repeated traumatic experiences in childhood can influence adult behavior. In particular, the case studies presented in the first edition of You’re the First One I’ve Told served as pilot data for a National Institute of Mental Health-funded study of the largest cohort of HIV-positive persons ever conducted in the Deep South. Through this study we were able to follow 611 HIV-positive patients sampled from eight infectious diseases clinics in North Carolina, South Carolina, Georgia, Alabama, and Louisiana. This study, entitled Coping with HIV/AIDS in the Southeast (CHASE), along with other research and interventions over the past decade have demonstrated the generalizability of most of the themes of the first edition of our book to the other states in the Deep South.

The Deep South is characterized as the six states that historically had their agricultural bases in cotton and tobacco and actively promoted slavery. Importantly, these are states where the HIV epidemic has never been under control, as illustrated on pages 16 and 17 in the first edition where data from 1983 to 2000 is examined. Since the book was published, we saw a 36 percent rise in new AIDS cases in these six states, compared with a 2 percent increase in the other states considered part of the U.S. South and a 2 percent decrease in the rest of the United States. More than one-third of persons who have been tested as being HIV positive in our states are not in medical care. The CHASE study and others point to the continued need for attention to the unique characteristics of this population, which can lead to an understanding of why efforts in our states have as yet not been successful in taming the HIV epidemic, diagnosing infections at an early disease stage, linking those who test positive to medical care, and then keeping them in care, on medications, and in stable health.

This second edition maintains the basic format of the first edition. We bring the new scientific evidence together in the thematic chapters and allow the voices of the first edition to frame the evidence in order to keep the work accessible and powerful. The first edition was used by students in classes related to the HIV epidemic and classes focusing on health disparities both in the United States and globally; policy makers, particularly those concerned about HIV in the southern United States; and HIV medical and social services providers. Many of those who read the first edition of this book will be in positions to influence the implementation of the Obama administration’s National HIV/AIDS Strategy, released in July 2010 and updated in July 2011. While including a strong focus on minorities with HIV, the strategy does not yet address the unique features of the epidemic in the Deep South. We hope that this book and similar works will improve our understanding of the epidemic and help us understand how to respond more effectively to the accelerating HIV crisis in the Deep South.

Acknowledgments

Many people have contributed to both the first and second edition of this book. Here we particularly thank those involved in the preparation of this second edition. We wish to thank Anne Berry for her excellent editing skills. We thank Anna Both for her editing and for putting all the pieces into their final format! We thank Sara LeGrand for her work updating the social support information, an area close to her heart and the basis of her PhD dissertation. We thank Susan Reif for always being willing to run just one more analysis. We thank several students and interns for helping us to update references and information: Melanie Kolkin, Priyanka Sista, Daniella Choi, Darren Webber, Yue Jiang, Nandini Kumar, John Min, Gechi Nzewi, and Ji Won Yeom. We are grateful to Trang Nguyen, who labored long and hard in the preparation of the first edition of this book, and the case study interviewers. We also appreciate the time, energy, and commitment of all those involved in the CHASE study, including our co-investigators, research sites, interviewers, and study participants.

Because we don’t get to acknowledge the support of our families in most of our work, we thank them here for putting up with our long work hours. You’re the best!

1

Setting the Stage

Sometimes I feel as though I care more about the lives of my [HIV] patients than they do themselves.

—North Carolina HIV physician, 1996

HIV offers a lens through which the underlying problems of the U.S. health care system can be examined.

—J. Levi and J. Kates, 2000

Human immunodeficiency virus, or HIV, is an incurable, debilitating, and ultimately fatal infectious disease. Over 1 million Americans are currently infected with HIV, with over 50,000 new infections in the United States each year. When the virus first emerged, no treatments were available; infection with HIV led nearly universally to a deteriorating immune system, progression to acquired immune deficiency syndrome or AIDS, and death. With the advent of the first HIV drug, AZT, in 1987, and the subsequent development in the mid-1990s of combination antiretroviral therapy—cocktails of three or more drugs that target HIV in multiple ways—HIV infection has been transformed from a death sentence to a chronic disease whose effects can be controlled, although not cured, for many years.

Yet even with these major advances in medical therapies, people infected with HIV face a lifelong requirement of daily medications to keep the virus in check. Unlike medicines for many other chronic diseases, these drug regimens are unforgiving. Even a small number of missed doses enables the virus to mutate and develop resistance to the medications. With the medications rendered ineffective, the virus resumes its attack on the immune system, leaving the infected person vulnerable to opportunistic infections—diseases that a healthy person’s immune system fights off without difficulty but that can devastate an AIDS patient—and ultimately death. Drug resistance has implications not only for the individual’s health but also for public health. As the medications become ineffective, the virus creates more and more copies of itself in the blood stream and genital secretions. This makes it more likely that the individual will infect others with whom he or she has unprotected sexual intercourse or shares drug-injection equipment.

Given these individual and public health implications, it would seem certain that those infected with HIV would make the medical management of their infection a central priority in their lives. Indeed, physicians who have worked in infectious diseases clinics since the 1980s say that, earlier in the HIV/AIDS epidemic, patients often came to their appointments with long lists of questions and sometimes more information about the most recent therapies than the physicians themselves had. Partners and friends often accompanied patients to medical appointments to help ask the right questions, understand the answers, and provide emotional and physical support. In the 1980s and early 1990s, those infected with and affected by HIV were their own health policy advocates. They pushed the Food and Drug Administration to allow HIV patients to take new drugs earlier in clinical trial phases and influenced policy makers to increase funding for research and treatment (Crimp and Rolston 1990).

The typical twenty-first century HIV patient is markedly different. The fully engaged, self-advocating patient of twenty years ago is less frequently seen. Patients who either appear complacent about medical care or may even seem to resist life-saving treatments are more common. Many patients miss regular HIV medical appointments that are essential to keeping the virus at bay, maintaining their health, and reducing their infectiousness to others. This lack of engagement in their medical care reflects a shift in the epidemic toward more disadvantaged populations. Today’s HIV patients are commonly facing multiple critical needs such as housing, heat, food, and clothing (Whetten-Goldstein, Nguyen, and Kim 2001). These needs are the physiological and safety layers at the very base of Maslow’s hierarchy of needs (Maslow 1987): they must be attended to before more distant priorities can be considered. For such individuals, following routine medical care to maintain good control of a chronic medical condition ranks lower in priority than obtaining food, shelter, and care for their children.

Physicians and care providers today struggle to help HIV patients make their own health a top priority. When treating HIV patients today, physicians face responsibilities uncommon in other medical specialties. Generally, physicians are trained to focus on the individual patient when patients present in clinic. Physicians are not well trained either to adequately assess the environment in which patients live or to determine factors that promote or deter patients from taking medications. Often, in specialty training, physicians are further trained to focus even more narrowly on specific body systems. In contrast to the narrow focus of much medical specialty training, effective treatment of HIV today necessitates a holistic understanding of physical functioning as well as treatments for a wide range of common accompanying illnesses and medication side effects. Providers are often thrust into the additional role of assessing patients’ potential for adherence to medications, since patients who take their medicines irregularly may introduce a drug-resistant virus to the public (Wainberg and Friedland 1998). This reality has led to intense debates over whether medical providers or policymakers should withhold HIV treatments from individuals or groups believed to be unlikely to remain in care or take medications reliably (Bartlett and Gallant 2000–2001; 2001–2002).

This shift in patients’ engagement in medical care has accompanied a major transition in the epidemiology of HIV/AIDS in the United States. The vast majority of those infected with HIV/AIDS in the 1980s and early 1990s were white males who reported having sex with other males, but today’s newly infected HIV patient is much more likely than before to be female and of minority race/ethnicity. These shifts are evident in the AIDS surveillance data published annually by the Centers for Disease Control and Prevention (box 1.1). According to the CDC reports, 8 percent of new AIDS cases in 1987 in the United States were female, but by 2007 women accounted for 27 percent of new AIDS cases and 26 percent of new HIV infections (CDC 1989, 2007). Similarly, blacks accounted for 25 percent of new AIDS cases through 1987 but 47 percent in 2007; for comparison, blacks comprise only 12 percent of the total U.S. population. Indeed, in 2007 the rates of new HIV infections and new AIDS cases were nearly ten times as high among blacks compared to whites. The proportion of new AIDS cases reportedly acquired through heterosexual contact increased from 4 percent in 1987 to 30 percent in 2007; 32 percent of new HIV infections in 2007 were reportedly acquired through heterosexual contact.

This demographic shift in the U.S. HIV epidemic has coincided with a marked geographic shift of the epidemic towards the South, more rural areas, and more impoverished areas. The South, as defined by the U.S. Census Bureau and the CDC, comprises the District of Columbia and sixteen states stretching from Maryland south to Florida and from the eastern seaboard west to Texas. The region is currently home to just over one-third of the U.S. population. The South accounted for barely 17 percent of all U.S. AIDS cases in the first years of the AIDS epidemic, between 1979 and 1983. In 1987, 29 percent of new AIDS cases were diagnosed in the South; by 2007, the South’s share had risen to 46 percent (figure 1.1). Meanwhile, the proportion of AIDS cases identified in rural areas has increased, with the highest increases in the rural South (Sowell and Christensen 1996).

Box 1.1. Understanding HIV/AIDS Surveillance Data

AIDS has been a nationally reportable disease since 1985, meaning that under public health law, doctors’ offices in the United States must report all cases of AIDS diagnoses to state health departments, which in turn report them to the CDC. The CDC publishes these data in an annual HIV Surveillance Report summarizing key epidemiologic characteristics of the epidemic—e.g., the breakdown of new cases by gender, race, ethnicity, transmission category, and geography (http://www.cdc.gov/hiv/topics/surveillance/resources/reports/index.htm).

An AIDS diagnosis usually occurs many years after infection with HIV, when the virus has eroded the immune system to the point that the individual starts to get sick from opportunistic infections, or diseases that a healthy individual easily fights off. Thus epidemiologic trends in new HIV infections are likely to take several years to be reflected in published AIDS reports. Furthermore, since the introduction of combination antiretroviral therapy in 1996, those infected with HIV who are receiving effective treatment can often live for many years, even decades, without developing AIDS. Thus current AIDS surveillance numbers reflect a time-lagged mixing of two dynamics: who got infected with HIV in the past, and who has not been receiving effective treatment.

Recognizing these limitations, the CDC has encouraged states to report not only AIDS diagnoses but also all positive HIV tests in order to have a more accurate picture of current dynamics in HIV infection. As of April 2008, all fifty states and the District of Columbia had implemented HIV test reporting. This will make a major contribution to our ability to monitor trends in HIV infection moving forward. However, since the mix of states with HIV test reporting has changed dramatically over the past twenty years, direct retrospective comparisons of HIV infection reports is not possible.

Additionally, in 2008 the CDC changed its reporting practice in the annual HIV Surveillance Report (http://www.cdc.gov/hiv/topics/surveillance/resources/qa/summary_changes.htm). Prior to 2008, the CDC listed the number of new diagnoses reported in a calendar year regardless of when they were diagnosed, whereas in 2008 and 2009 the CDC listed diagnoses according to the year of diagnosis. This shift complicates comparisons of surveillance data from before and after 2008.

For these reasons, in our discussion of time trends in this chapter, we focus on comparisons of AIDS diagnoses through 2007, recognizing that these numbers reflect both a time delay and a mixing of transmission dynamics and treatment dynamics. The observations we make about trends over time in the gender, racial, transmission mode, and geographic distribution of the HIV/AIDS epidemic have been substantiated by more sophisticated analyses that have used the available data on new HIV infections to generate national estimates over time (Hall et al. 2008).

As dramatic as this increase is, it may reflect an underestimate of the burden of HIV/AIDS in the South. CDC surveillance data reflect the state where a diagnosis was made and do not track where people move after diagnosis. Studies including HIV-infected people in the South find that a substantial proportion of individuals migrated to these states after being diagnosed with HIV elsewhere (Cohn et al. 1994; Lansky et al. 2000). Studies from other rural areas have found similar patterns of inward migration and spread (Davis and Stapleton 1991; Graham et al. 1995; Lam and Liu 1994). These migration patterns have important implications for the matching of federal funding to need. Federal HIV-related funding allocations are based on the number of HIV/AIDS cases diagnosed in a state. When cases are consistently diagnosed in states and counties other than where the person lives, resources are misdirected; monies flow to the state and county of diagnosis rather than the place of residence, which limits the ability of those states with substantial in-migration to provide the necessary care for their HIV-infected residents. The topic of funding allocations will be discussed in more detail in chapter 6.

Figure 1.1. AIDS Cases in the South as a Percentage of All U.S. AIDS Cases, 1983–2007.

The increase in AIDS cases in the South is particularly concentrated in a band of six southeastern states referred to as the Deep South: Louisiana, Mississippi, Alabama, Georgia, South Carolina, and North Carolina (map 1.1). The Deep South is traditionally defined as the states that share a common history of having an agricultural base in cotton and tobacco and that actively promoted slavery (Merriam Webster’s Collegiate Dictionary, 2005; web ref. 2011). In these six states, the number of new AIDS cases increased 23 percent from 2000 to 2007; over the same time period, new AIDS cases decreased by 9 percent in the rest of the Southern states and decreased 12 percent in the rest of the United States. Even accounting for uneven population growth, AIDS incidence rates per 100,000 population increased over this period in the Deep South while decreasing in other areas of the United States (figure 1.2). These states share demographically similar HIV epidemics, with higher-than-average proportions of new cases among blacks, women, and those acquiring HIV through heterosexual contact (Pence, Reif et al. 2007).

Map 1-1. Southern States.

Deep South—Louisiana, Mississippi, Alabama, Georgia, South Carolina, North Carolina. Rest of South—Texas, Oklahoma, Arkansas, Tennessee, Kentucky, Florida, Virginia, West Virginia, Maryland, Delaware. From 2000 to 2007, the number of new AIDS cases increased 23 percent in the Deep South states, decreased by 9 percent in the rest of the Southern states, and decreased by 12 percent in the rest of the United States.

The Deep South states are notable not only for their particularly intense HIV epidemic but also for other adverse health indicators, high poverty rates, and long distances to specialty care. Low birth-weight rates, often used as a sensitive predictor of the health of a population, are among the highest in this region as are syphilis rates and age-adjusted mortality rates (Ricketts 1999). These high mortality rates include such chronic conditions as heart disease, stroke, diabetes, and even asthma. Between 16 and 22 percent of the population in the Deep South states live below the poverty threshold as defined by the U.S. Census Bureau (CPS ASEC 2010). And HIV specialty medical care in the Deep South is primarily located in large hospitals in the states’ urban centers; one study conducted in three of the six Deep South states found that 76 percent of the HIV-positive, poor patients receiving care at academic medical centers were rural residents who traveled an average of forty-five miles to reach care (Whetten-Goldstein, Nguyen, and Kim 2001).

Those demographically representing the new HIV epidemic in the South—people who are rural living, female, African American, and poor—represent people who face extensive barriers to care. In fact, they face barriers regardless of the condition for which they seek treatment, be it diabetes, cancer, or HIV. However, HIV creates unique barriers, such as serious stigma and confidentiality concerns, demanding medical treatment protocols, and behavioral changes, that can be difficult to make under the best of life circumstances.

Figure 1.2. New AIDS Cases per 100,000 Population.

Book Goals

This book is dedicated to telling the life stories of twenty-five HIV-infected individuals reflecting the new face of the HIV epidemic in the Deep South, framed within the context of current research about HIV. The book had its genesis in the late 1990s, after new and powerful medications had transformed HIV from a death sentence to a serious chronic illness. Despite this medical advance, physicians were increasingly challenged by their new patients’ difficulties remaining engaged in their own life-saving medical care. In order to understand these difficulties, we undertook a series of extensive interviews with these twenty-five individuals. These interviews explored issues ranging from their childhood experiences and trust in the medical system to their perceptions, beliefs, and behaviors related to their HIV medical care.

The life histories served as the foundation for a large quantitative study of 611 HIV-positive persons consecutively sampled from infectious diseases clinics in North Carolina, South Carolina, Louisiana, Alabama, and Georgia. This revised second edition includes the lessons learned from the larger study, Coping with HIV in the Southeast (CHASE), as well as information from other studies conducted after the first edition was published that advance our understanding of the HIV epidemic in this region.

While those who tell their stories in these pages are all infected with HIV, the common themes their histories evoke are much broader. Indeed, HIV can be seen as a lens through which to view and understand the social systems and structures, from family units to communities, to regional and national policies, that lead to poor health. The South is a region of high morbidity and mortality for diseases considered to be caused by a complex array of genetic, behavioral, and environmental factors, including both the physical environment and the social environment. As we discuss throughout this book, persons who represent the new face of HIV present complex challenges to health and social service providers. However, these very care structures also present their own unique challenges to persons infected with HIV.

2

Voices of the Past

I used to think we were living in hell. I said, It can’t get no worse than here because what I was going through with the resentment my mama had toward me, the beatings that I had, I just knew I was living in hell, and I used to say it. I say, This hell where I’m living.

All four of them … I never told nobody but you, … I was young, it was a dirt road down low and all four of them.…

For clinicians, the disease usually defines the patient. The task at hand is to address the clinical presentation in as effective and efficient a manner as possible. The person with HIV, for example, enters a system of HIV-related health care and social services because of her disease; health and social service providers then work with the patient to respond to her immediate clinical presentation and develop treatment plans to optimize her long-term health. Good clinicians assess their new patient’s health history, while social workers and case managers evaluate a new client’s current life necessities (for example, food, housing, and electricity), home life, and even social support systems. Rarely, however, does this process involve obtaining a true life history of the patient—the childhood, adolescent, and adult experiences that have made her who she is.

But diseases do not independently enter people’s lives in isolation from those individuals’ life histories; for the individual, the disease is simply one more thread in the complex tapestry of his life. Each individual is the product of a unique combination of childhood, adolescent, familial, school, and community experiences as well as environmental influences. These influences and experiences fundamentally shape the manner in which the individual perceives his HIV infection, prioritizes its management in relation to other life needs, seeks and engages in medical care, takes recommended medications, or changes dietary, exercise, or sexual behaviors. A patient’s disease is shaped by his complex past experiences and present circumstances. Yet all too often, providers lack a complete understanding of their patients’ life histories when trying to arrange medical and social services.

To help us understand more about the life histories of persons living with HIV in North Carolina and how these life histories relate to their HIV care, in 1998 we conducted extensive interviews with a sample of twenty-five people. We randomly selected individuals from lists of HIV clients recommended by case managers as likely to be willing to participate in the study. In total, thirteen women and twelve men were interviewed; eighteen of the clients were African American (table 2.1). Nineteen participants lived in rural areas, and six lived in mid-sized cities. Fifteen of the twenty-five interviewees were born and spent most of their childhood years in rural North Carolina; the other ten moved to North Carolina when they were either very young or in their early teens. By their own account, ten clients contracted the virus from heterosexual relations, and six reported their mode of transmission as IV drug use. Five men said that they contracted HIV through homosexual relations, while four clients could have been infected from either heterosexual contact or IV drug use but were not sure which.

Our purpose in this chapter is to introduce the twenty-five case study participants by allowing them to tell their own stories with as little filter or interpretation as possible. For that reason, the chapter moves from the life history of one participant to the next with no interpretive or explanatory commentary. Presenting the participants in this way allows the reader to get a sense of each person as an individual with a story to tell. Having completed approximately eight hours of interviews per person, we could have presented a chapter on each person, but we believe it is more powerful to place common themes from all the participants side by side. The presentations are not equal in length because participants differed in the amount of information on a given topic that they shared with us. All names have been changed to protect the identities of the respondents.

The Women

Amy

Amy, who was adopted and raised by her aunt and uncle, stated that her biological mother did not want her because she was too black. Amy’s biological sister was able to stay with their mother because she had light skin like their mother. Amy never met her biological father, although she was still looking for him at the time of the interview.

Amy’s biological mother did not want her sister (Amy’s aunt) to adopt Amy and instead left Amy with another woman; however, the aunt fought in court for and was awarded custody of Amy. Amy became the oldest child in her aunt’s family of three other girls, and she was treated as a servant. Her adoptive parents (her aunt and uncle), hereafter referred to as her mother and father, did not work outside the home; her father was a drunk who picked tobacco at times. Amy described her childhood home as a shack that the landlord would not fix. A wood heater supplied warmth, but there was no running hot water, and the house was cold when it rained. Amy states that her mother always made sure that they had enough warm clothes and other necessities that were provided by relatives who lived in the North. Amy’s other aunt and uncle from the North supported her by buying me gifts on Christmas and bringing me gifts to show their love. Before school each day, Amy had to work in either the garden or the house. While at school, Amy was regularly teased because her clothes were old and she smelled. She felt like an outcast from both her family and the schoolchildren.

At home, her father regularly beat her mother. The four girls would hide when the beatings and arguments took place.

I can remember when I was a little girl I played in the mud and made pancakes and stuff, you know right by my little self. You know when you are a little child and growing up you be thinking, and I was thinking. I see how mama and them were doing fighting and fussing, carrying on and fussing and stuff and I would be by myself and they would be fussing and I would be like this [imitating being scared]. I must be in the way or something; you know I couldn’t stand it. Then I would run under the house.

The girls feared for the life of their mother and worried about what would happen to them if the mother were killed. On more than one occasion, Amy used a neighbor’s telephone to call the police on her father.

When asked to recall a happy childhood memory, Amy reported, The only happy memory I can think of is I played with other kids, just playing, shooting marbles … I don’t think I ever had a birthday party because Mama couldn’t afford those things when I was coming up as a kid.

Amy quit high school because she was too embarrassed about always arriving late and the way she looked, both of which she felt powerless to change.

I had stopped [in the tenth grade] because my mama always had me going somewhere. And I got kind of scared walking in the [class] room because I was late all the time. And the teachers are always, they’d say, Amy, you’re late again. And then my mama would have me doing something before I could get to school, and I was shy then, and I’d say Yeah, you know, she’d have me going to places. And I’d say, Mama, I’ve got to be in school. You go where I tell you. You know. Do this and do that. And I would go to school.… Every time I would walk in the classroom, and they’d look at me. You know, I’d try not to look at them but I know they was looking at me.… I quit school because … I didn’t dress like.… [cries] I didn’t have the clothes like, you know, the other children that went. They all would tease me. They was always teasing me about, you know, the way I looked. That’s another reason why I had quit.

When asked about her ambitions as a child, Amy reported that she simply wanted to help other people: You know, be treated not like I had been treated like my mama and daddy treated me. I want to treat somebody nice and, you know, respectful.