New York: Penguin Press, 2004. 244 pp. $19.95.
Xolani Nkosi was born in a squatter’s camp in 1989, already infected with the human immunodeficiency virus (HIV), and was orphaned when his infected mother died two years later. Having lived those first two years of his life in a corrugated tin shack among hundreds of other Zulus, Nkosi became a national advocate for the rights of people with HIV/AIDS in just ten years. His life became a symbol of all that could be accomplished with the overwhelming challenge of living with HIV/AIDS, poverty, and racism. His short life was wrought with agonizing physical symptoms, painful racial discrimination in postapartheid South Africa, and a rigid national political stance that distorted and essentially invalidated the medical definition of HIV. Nkosi fervently fought for the rights of those living with HIV/AIDS, including his own right to a formal education. In partnership with his White adoptive mother Gail Johnson, he traveled through South Africa and the world on AIDS-awareness campaigns, gave the keynote address at the 13th International AIDS Conference in Durban, South Africa, and lobbied successfully to open Nkosi’s Haven, a home for HIV/AIDS-infected mothers and their children. After his death, Nkosi received the World’s Children’s Prize for the Rights of the Child and the Global Friends’ Award for his unparalleled achievements in educating and spreading awareness of HIV/AIDS.
Why do some youth, like Nkosi, prevail and succeed in the face of adversity? The proven strength of Nkosi’s vision and resilience, though inspiring, should not be surprising. Young people’s capacity for success and strength despite adverse circumstances is at the core of We Are All the Same: A Story of a Boy’s Courage and a Mother’s Love. Appropriately, author Jim Wooten does not speak explicitly in terms of risk and resilience; his inspiration to document Nkosi’s story came from watching the boy overcome a kind of hardship many of us can only imagine. In writing the book, Wooten hoped to “put a [human] face on the disease.”1 His story instead focuses on Nkosi’s daily life: the people he held close, his sense of humor, his quirks, his virtues, his challenges. In this review, I situate Wooten’s observations of Nkosi’s life in the larger intellectual framework of risk and resilience by examining the likely effects of risk on development, combined with the possible mechanisms by which Nkosi developed a unique and individual sense of resilience. Ultimately, I will show how, despite the presence of multiple risk factors, well-being can be achieved through close personal relationships and internal and external assets, characteristics that promote resilience in the developing adolescent.
South Africa and the Pandemic
In 2002, 108 million children were orphaned by AIDS globally, 11 million in sub-Saharan Africa alone. Yet, just twelve years earlier, fewer than one million children in that region had lost one or both parents to the disease (UNICEF, 2005). Even with all the ethnic, sociocultural, and economic diversities that exist within the African diaspora, South Africa remains a distinct paradox. One palpable irony is the history of hostile oppression under the apartheid regime that dwells alongside modern national economic development, making it “sub-Saharan Africa’s most prosperous country.” Furthermore, the current government’s fundamental and distinct views on the spread of HIV/AIDS necessarily politicize the pandemic.2 In a population of about 45 million, 250,000 South African children are living with HIV/AIDS, and 660,000 children have been identified as “AIDS orphans.”3
In South Africa, the pandemic continues to grow rapidly despite — or perhaps in conjunction with — the now-blurred lines between disease and politics, racism and tolerance, family and institution, all in the context of poverty. The pandemic distorts the artificial boundary that once separated adulthood and childhood, as changing demographics force more children to float between foster homes or to serve as caregivers for themselves and younger siblings. These responsibilities and risks — the old and new alike — question the meaning and expression of optimal mental health among these very children. While the statistics and context of the pandemic in South Africa paint a clear image of the destruction caused by AIDS, what remain shadowy are the faces, daily lives, and personalities of the children charged with these added responsibilities and risks. In We Are All the Same: A Story of a Boy’s Courage and a Mother’s Love, Jim Wooten fills this gap with a portrait of one exceptional child, 12-year-old Nkosi Johnson.
The Portrait of Nkosi
Though Wooten, a journalist by profession, does not name his methodology as portraiture, his capacity to “combine systematic, empirical description with aesthetic expression, blending art and science, humanistic sensibilities and scientific rigor” (Lawrence-Lightfoot & Davis, 2002, p. 3) is characteristic of this social science method.4 Wooten’s relationships, indeed friendships, with Nkosi and Gail were founded upon years of interviewing, participant observation, document analysis, and a consistent degree of empathy and curiosity that began in 1989. As is characteristic of the method, Wooten’s voice is alive and present in the portrait; while the story is about Nkosi’s duel with HIV/AIDS and his strong character, the writing is symptomatic of a compassionate and inquisitive observer. The method is perfectly appropriate for Nkosi’s story; its power is in conveying themes to an audience through artistry, while weaving journalistic expression through historical fact, people’s stories and impressions, and contextual details (Lawrence-Lightfoot & Davis, 2002). Wooten does this masterfully by sharing his own experiences of living and working in Africa, revealing insights from noteworthy conversations and anecdotes, and directly quoting his protagonists. Wooten presents paradoxes, secrets, and ironies that emerge from his wonderful exchanges and observations. His book is a thoughtful, true, and respectful interpretation of one boy’s life, and the contextual details make Nkosi come alive.5
Incidentally, Wooten’s title choice for Nkosi’s portrait is layered and in itself a paradox. Perhaps most importantly, the title speaks to the stigma that continues to serve as a vehicle of discrimination against people living with HIV/AIDS in South Africa. “We are all the same” alludes to the poignant wording in Nkosi’s invited speech at the 13th International AIDS Conference in Durban. In his speech, Nkosi, speaking on behalf of AIDS patients worldwide, appealed to his audience by reminding them, “We are normal. We have hands. We have feet. We can walk, we can talk, we have needs just like everyone else — don’t be afraid of us — we are all the same!”6 Furthermore, a book centering on the South African context cannot stand alone without weaving in the dynamics and history of race. Considering the context of postapartheid South Africa and Nkosi’s situation as a Black Zulu child adopted by a White South African mother, “we are all the same” also rings of antiracism and racial equality.7 The speech’s title refers not only to equality for humans with and without the disease, but also to equality along racial lines — an especially weighted concept in the South African context. And, though Wooten fairly casts his portrait under these conditions, the postapartheid context is but the situational sociopolitical backdrop to the resilience of the young protagonist, Nkosi Johnson. The book speaks best to Nkosi’s persistence and feisty activism despite the political and racial barriers he continually faces in this postapartheid context. In the face of risk and adversity, humans exhibit psychological adaptations that can range from pathological traumata to expressions of psychological strength and hardiness. Paradoxically, We Are All the Same is perhaps a more apt example of the individual differences humans exhibit in the psychological development of resilience.
Concepts of Risk and Resilience
The historical underpinnings of human development and child psychology have centered on “normal” development and the kinds of factors, or risks, that could thwart “normal” development and potentially lead to psychopathology. Consequently, research focused on adverse environments and their negative influences on psychological development. This paradigm implicitly afforded the child’s context and environment more agency in psychological development than the child’s own capacities; the environment was held accountable for poor mental health in children (Harvey & Delfabbro, 2004). This model seemed insufficient to explain the variation in child functioning and adaptation, however. Some children, even in the face of substantial adversity, would prevail, adapt, and achieve well beyond the expected limits imposed by their environments (Cowan, 1991; Harvey & Delfabbro, 2004; Luthar, 2003; Luthar & Cicchetti, 2000; Werner, 2000). These children showed that individual differences exist in how people respond to disadvantage and risk, and that children need not inevitably succumb to the negative pressures of their environments (Harvey & Delfabbro, 2004). Thus, the language of resilience emerged to answer the psychopathology framework’s criticisms and to study and recognize children’s agency in adapting successfully to unstable environments.
The construct of resilience, then, could be described and often predicted by the ways in which risk, individual characteristics, and environmental factors communicate with one another. “Protective factors,” also known as “assets” (Scales & Leffert, 1999), are the characteristics of an individual child and her or his environment that can support and strengthen a child’s resilience. Both external assets (i.e., characteristics in the child’s environment) and internal assets (i.e., characteristics of the child) contribute to the child’s positive level of functioning. For example, solid social supports, particularly positive family connections, are often the basis of resilience and competence in children (Coatsworth, 1991; Scales & Leffert, 1999; Schoeny, 2001).
Examining Resilience in the Face of Multiple Risk: Parental Support and the Individual Child
How did Nkosi come to be an internationally recognized symbol of hope and optimism as “the public face of AIDS”?8 Wooten suggests that Nkosi’s resilience is largely an effect of consistently strong parental support. When Nkosi was an infant, his biological mother, Daphne, learned that Nkosi (like his mother) had HIV/AIDS. After a harrowing trip to Johannesburg to flee poor conditions in the squatter’s camp, Daphne came to know of the Guest House, a home — “half haven, half hospice” (p. 95) — where gay men infected with HIV/AIDS could live. After getting to know the staff at the Guest House, Daphne brought her baby there, secure in the notion that these men and staff could provide a family for her sick son. Gail Johnson, the founder of the Guest House, instantly fell in love with the boy. The hospice residents played and joked with the boy as he grew, and the boy gradually became comfortable with his new family. While Daphne visited when her health allowed it, Nkosi developed his own independence and place with this new hospice family, and grew close to Gail and her family. Gail would take him to her home on the days when his health was particularly bad, and he came to know her family too. Eventually, Gail became his strongest source of support, particularly when Daphne eventually surrendered to the disease.
In his observations of Nkosi’s life, Wooten attributes much of the boy’s strength to his external assets, particularly to his relationship with his adoptive mother. In the close and sustaining personal friendships he developed with Gail and Nkosi, Wooten observed the strength of a positive and secure parent-child relationship. Though Wooten builds Nkosi’s story on this relationship, it simultaneously serves as a framework from which to describe Nkosi’s resilience. Wooten devotes a significant piece of Nkosi’s portrait to illustrating Gail’s own vision and drive for her son’s success, intensified by a deep and unyielding love for him. Gail’s willingness to do and try anything for her son to have an education, be seen as a “normal” child, and be cared for in a way that celebrates his spirit accents and explains Nkosi’s own resilience. Reflecting on Nkosi’s life, Wooten shares a conversation with Gail:
“This will sound a bit odd, I’m sure,” she would recall, “but there were times when I thought I believed I could somehow do what no one else had ever done, which was to change the outcome of his infection.” She thought she believed: an interesting if illogical paradigm, constructed as much for her own benefit as for the boy’s. She understood that ahead of both of them lay mountains of considerable pain and anguish, yet by persuading herself that there was a worthwhile objective, she thought she believed she could bear it herself, thought she believed she could help him endure it as well. “The truth, of course, is that I was never really and truly convinced that in the long run I could save him or cure him,” she said. “I only acted as though I could, and that kept me going.” (p. 108)
Indeed, theorists have assumed that family and family dynamics are, ecologically, in closest proximity to the child (see Berlin, Brooks-Gunn, & Aber, 2001; Bronfenbrenner, 1986); thus, family is thought to have the greatest influence on the child’s development, including his or her development of resilience. Moreover, in a study on trauma in adolescence, Mishne (2001) found that the single most outstanding predictor of future positive adjustment and resilience was the nature of the parent-child tie. Human ecology refers to the interrelationships that exist between humans and their environment — social, physical, biological, cultural, and human. Individual humans and groups of humans can be situated at differing levels of proximity to the child, representing their influence on child development; closer levels are theorized to have more influence (Bronfenbrenner, 1973). Given this context, the nature of a child’s closest relationship ought to contribute powerfully to the development of resilience. Wooten interprets Gail’s drive to protect her child to be as much a benefit to her own well-being as it is for Nkosi’s; this suggestion attests to the potency of interactions between parent and child, in fact, between “ecological levels” (Bronfenbrenner, 1986).
Supporting these external assets were Nkosi’s internal assets; his own character, “courageous” and “strong,” was perhaps the greatest tribute to his resilience. Evidence of his character is plentiful in the narratives of family and friends. Nkosi was described as a “brave warrior” who gave “a human face to HIV/AIDS” (p. 231); at his funeral, it was said that “Nkosi lived only a dozen years . . . but his influence is infinite” (p. 233). Yet, Nkosi’s own actions are most poignant in conveying his real capacity to endure and prevail. For example, at a time when Nkosi came to grasp the reality and nearness of his own death, he became “deeply depressed” (p. 177). Still, he had promised himself to educate the world about his condition, and he felt his obligation was strong and significant. Though taking his medications was one of the most wretched experiences for Nkosi, even the slight possibility that taking them would allow him to keep his promise to himself inspired him to continue living.9 In a particularly moving excerpt, Wooten observes a conversation between the boy and his mother, following the boy’s reluctance to swallow his pills:
Gail asked bluntly if that meant he had decided he wanted to die. . . . “Well, all right, then,” Gail said. “We’ve had this discussion before, haven’t we?” Nkosi said, “Yes, we have a deal. I take my medicine, and . . .” “And,” Gail finished his sentence, “we fight together. That’s our deal. You take your medicine, and both of us fight — and then, if you decide you want to cop out and give up . . .” Nkosi interrupted her. “I don’t want to cop out,” he said. “I don’t want to give up.” “Well, then don’t. Be as strong as you possibly can.” He was crying again by now. “I can’t help it, ” he said. (p. 177)
Among the multiple environmental risks Nkosi faced, the physical disease was certainly his greatest nemesis. Nkosi’s desire to overcome the disease, despite his understanding of its real consequences, is expressly indicative of the resilience that developed over the course of his short life. What is most impressive is his belief in his own abilities to succeed: “Never mind,” he announced. “I’m going to make my life matter” (p. 244).
Though much of the portrait focuses on the positive and enduring relationship between Nkosi and Gail, as well as Nkosi’s individual strength, Wooten tempers this rosy representation with real images of grief and pain by way of Nkosi’s disease, the racism that abounds and the harsh stigma that seems to inevitably accompany HIV/AIDS in South Africa. Nkosi’s ability to beat the odds may have come largely in response to the effects of many risks imposed on his development. For example, did the boy’s resilience reflect the number of risks, as opposed to the type of individual risks he faced? “Cumulative risk” refers to the additive effect of multiple risks on a child’s development (Sameroff, Bartko, & Baldwin, 1998; Sameroff, Gutman, & Peck, 2003; Sameroff, Seifer, & Bartko, 1997). Studies examining the effects of cumulative risk on child development suggest that cumulative risk is in fact much more destructive than any individual risk, particularly when the risks dwell across ecological subsystems (e.g., family, school, neighborhood, political climate); this phenomenon has also been referred to as “stressor pile-up” (Sameroff et al., 2003; Smokowski, 1999). There is no doubt that Nkosi had cumulative risks: born in a crowded and unsanitary squatter’s camp, shifted from one family to another in early childhood, orphaned by HIV/AIDS as a baby, the subject of national controversy, and living with the dreadful physical effects of HIV/AIDS. Yet despite the detrimental effects we might expect from Nkosi’s numerous risks, he still accomplished his dreams — to open a shelter for infected mothers and their children, to travel the world spreading awareness of HIV/AIDS, and to go to school so he could read and write. Though Wooten relied principally on family stories and his own observations of Nkosi’s life, empirical evidence exists to support the idea that when the love between parent and child is combined with the child’s individual characteristics, even the effects of “cumulative” risks can be overcome (see Kriebel, 2003; Voegler, 2000). For example, in a mixed-methods study of adopted children, while cumulative risk was a significant and negative predictor of competence in children, parenting quality remained the only significant positive predictor of competence (Kriebel, 2003). Nkosi even prevailed over the expected outcomes of the disease; but, sadly, the effects of HIV/AIDS eventually surmounted all the environmental, political, and contextual risks he would ever have to endure. As Wooten writes:
In fact, the eight-year-old Nkosi had lived longer than any child ever born HIV-positive in South Africa or, as far as anyone knew, anywhere else on the continent. Most died within the first three years. Only a few lived past their fourth birthday and almost none past their fifth. His doctors could not fully explain his remarkable longevity, but they suggested then and later that it was at least partially the product of the loving care and attention he was receiving from Gail and her family, as well as the hygiene of his new home, his healthy diet, and the brace of medications he was taking each day. Not least, they attributed his survival to his stout heart: his emotional and psychological stamina and his steadfast determination to survive. (p. 137)
As we await insistent and progressive movement on the part of governments to curb the wide-ranging effects of HIV/AIDS on global youth development, what seem promising are the stories of affected youth who are forging forward to make their lives matter regardless of the lack of political action. As Nkosi has demonstrated, the potential of these youth to inspire, motivate, and activate people to intentionally create a better outlook for people affected by HIV/AIDS is far-reaching. In particular, when resilience is nurtured, as it was so visibly in Nkosi’s case, a child’s potential for positive influence — both on him- or herself and on his or her environment — can expand and proliferate beyond initial expectations. Still, though many HIV/AIDS affected youth share risks (poverty, racism, physical pain), the ways resilience is expressed and nurtured is less communal. Understanding the pathways to resilience and how youths’ assets can be strengthened is critical if resilience is to be cultivated to serve the purposes of positive youth development and well-being.
In uniting South Africa’s political history with the epidemiological development of HIV/AIDS, Wooten paints Nkosi’s portrait with compassion, truth, and a trace of desperation. Perhaps more so in a personal way, Wooten communicates the emotional result of recognizing strength and courage in the face of overwhelming hardship in a young boy. Journalistically, though the book emphasizes Nkosi’s life, Wooten attends to the parallel stories that influence the world of health and disease, race and family. Ultimately, the death of this young activist confirms the need for governments and individuals alike to acknowledge and take action on the devastating effects on children of the HIV/AIDS epidemic in Africa. Drawing on stories of successful interventions for AIDS orphans throughout sub-Saharan Africa and critically balancing the political will different countries have to support HIV/AIDS treatment and awareness, Wooten shines a realistic and long-awaited light on the face of orphanhood and the eventual impression it can make in the world. Through interactions with Gail, characteristic glimmers of who the boy Nkosi was, and descriptions of the multiple risks in Nkosi’s life, Wooten reflects on the enduring quality of childhood and its ability to triumph even in the bleakest of outlooks.
Priya G. Nalkur