Helene D. Gayle, M.D., M.P.H.
Director, National Center for HIV, STD, and TB Prevention
Centers for Disease Control and Prevention
"HIV/AIDS: Discrimination, Stigma and Shame"
January 31, 2001

Helene Gayle: Throughout my work in AIDS, one of the most frequently asked questions I get on the subject of HIV/AIDS in the African American community is why has it taken so long for the African American community to respond to AIDS? More recently, with the publicity around President Mbeki’s comments about HIV/AIDS and my role on his advisory panel, I am frequently asked the same question regarding the South African response to AIDS. When I was first pondering what I could discuss in this presentation that relates to some of the themes of this series, Phil Nieburg and I got into a discussion about President Mbeki’s response to the epidemic in his country. During our discussion, I started to explain why his response was in fact very understandable, despite what I might think about its correctness. In the course of talking, it struck us that this was in fact an issue that raised several important and interesting public health and broadly speaking ethical issues and thus, this presentation theme was born.

So in the next 30 minutes or so, I will try to lay out an argument for how racism, stigma, shame and marginalization have had a unique role in shaping the societal and individuals responses to the HIV/AIDS epidemic and hopefully how this understanding can lead the way to a more effective response in the future.

I will try to cover:

• Overview of the epidemic in African Americans and South Africans
• Parallels in the experience of racism for African Americans (slavery and segregation) and South Africans (apartheid)
• The impact of racism on population self-esteem, stigma and marginalization
• How self-esteem, stigma and marginalization influence population and individual response to outside threats such as AIDS, and finally
• How that understanding work to develop more effective responses to the HIV/AIDS epidemic

To begin with there are clear similarities and parallels between the African American and South African experiences of institutionalized racism.

Slavery and segregation in the United States and apartheid in South African stand out as two of the most extreme forms of long-term systematic, racism.

In both instances, for the purpose of economic advantage, an entire belief system, that of black inferiority, and reinforcing social structures, apartheid and slavery and segregation were developed to maintain economic advantage of one group over another. Although there are many definitions of racism, for the purposes of this talk, the one I find most useful is:

• Beliefs, attitudes, institutional arrangements and acts that tend to denigrate individuals or groups because of phenotypic characteristics or ethnic group affiliation.
• The hallmark of this definition is human degradation and the destruction of self-esteem.
• What is essential to racism is the lower of one group’s self-image and self-esteem generally for the purpose of domination by another.

The intent of racism and the long-term impact has been well described by many. Once such description is by psychologist Na’im Akbar who wrote "The shrewd slave masters were fully aware that people who still respected themselves as human beings would resist to the death the dehumanizing process of slavery. Therefore, a systematic process of creating a sense of inferiority in the proud African was necessary in order to maintain them as slaves. This was done by humiliating and dehumanizing acts such as public beatings, parading them on slave blocks unclothed and inspecting them as cattle or horses. ……Many historians and slave narratives report how young children were separated from their mothers because the mother’s love might cultivate some self-respect in the child. ….These things, combined with the insults, the loss of cultural traditions, rituals, family life, religion and even names, served to cement the loss of self-respect. As the slave master exalted himself and enforced respect of himself, he was increasingly viewed as superior to the slaves.

Succinctly put by historian, Carter G. Woodson in his book, Miseducation of the Negro, wrote "…..to handicap a student for life by teaching him that his black face is a curse and that his struggle to change his condition is hopeless, is the worse kind of lynching. It kills one’s aspirations and dooms him to vagabondage and crime."

This dehumanizing treatment had the desired impact to a great extent, stripping the Africans imported to America of a sense of self-worth, instilled a sense of inferiority relative to whites and develop for whites a privileged existence and a sense of superiority. This social order came to be viewed by the bearers of the American tradition as a truism. Hence the words of the founding fathers and politic greats like Thomas Jefferson and Abraham Lincoln who wrote the following words at that same time that they were talking about liberty and equality for all.

• In the words of Thomas Jefferson: "Comparing them by their faculties of memory, reason, and imagination, it appears to me that in memory they are equal to the whites, in reason much inferior, as I think one could scarcely be found capable of tracing and comprehending the investigations of Euclid: and that in imagination they are dull, tasteless, and anomalous.
• He went on further to say: They secrete less by kidneys, and more by glands of the skin, which gives them a very strong and disagreeable odour…They are at least as brave, and more adventuresome. But that may perhaps proceed from a want of forethough, which prevents them seeing a danger till it be present….Their griefs are transient. I advance it therefore as a suspicion, that the blacks, whether originally a distinct race, or made distinct by time and circumstances, are inferior to the whites in the endowments both of body and mind.

Despite his role in ending slavery, Lincoln was evidently not motivated by a commitment to equality of the races:

• Among other things Lincoln stated: "I can conceive of no greater calamity than the assimilation of the Negro into our social and political life as our equal…..
• And in case anyone didn’t get the point, he said: "I agree with Judge Douglas that he (Negroes) is not my equal in many respects, certainly not in color, and perhaps not in moral or intellectual endowment.

• And finally : "I have not purpose to introduce political and social equality between the white and black races. There is a physical difference between the two, which, in my judgement, will forever forbid living together in perfect equality: and inasmuch as it becomes a necessity that there should be a difference, I, as well as Judge Douglas, am in favor of the race to which I belong having the supremacy.

All of this must be taken into context, given the times, but nonetheless, this is part of the historical legacy and the historical wound.

Images that reinforce black inferiority-such as little black Sambo, Tarzan, etc.- continued through the history of this country and have only recently been vigorously challenged.

The legacy or apartheid was equally cruel and destructive. Contrary to the simplistic classification of race in the United States (one drop of black blood classified one as black), South Africans had a race structure that included 10 different races, all in a hierarchy that clearly spelled out ones social order relative to whites.

The Boers or Afrikaners advanced an ideology of racial inferiority that laid the foundation for apartheid. According to the Boer idea, the kaffir (Afrikan word for nigger), the Hottentot and the Bushman belong to a lower race than the Whites. They carry, as people once rightly called it the mark of Cain: God , the Lord, destined them to be the "drawers of water and the hewers of wood", as presses[servants] subject to the white race….People can only control a Kaffir or a Hottentot through fear; he must always be kept in his place; he was not to be trusted; give him only a finger and he will take the whole hand. The Boer does not believe in educating him; yes, I do not believe that I go too far when I express my feeling that the Boers as a whole doubt the existence of a Kaffer- or a Hottentot-soul.

Finally, although I have highlighted the experience of African American and South Africans because of very intentional impact on self-esteem and inferiority, African colonialism generally had a similar effect and has probably also influenced the response of other African nations to the HIV/AIDS epidemic. In the book African Perspectives on Colonialism, author A. Adu Boahen says the following about the impact of colonialism:

• "The final and worst psychological impact has been the generation of a deep felling of inferiority as well as the loss of a sense of human dignity among Africans. Both complexes were surely the outcome not only of the wholesale condemnation of everything African, but, above all, of the practice of racial discrimination and the constant humiliation and oppression to which Africans were subjected to throughout the colonial period. The sense of human dignity seems to have been regained, but the feeling of inferiority has not entirely disappeared even after two decades of independence.

The sense of shame and inferiority did take hold. In a classic experiment in the early 1950s, the husband-wife team of psychologists Kenneth and Mamie Clark demonstrated the impact of longstanding racial discrimination and negative imagery. This study was an important part of the foundation for the Brown vs. Board of Education segregation case that ultimately lead to desegregation of schools in this country. They used two different methods of measuring self-esteem and racial identification, a coloring test and a doll test. Both showed a preference among black children 5-7 years old for white skin or white dolls and that preference was more pronounced for children with darker skin. So for example, when asked whether they would prefer to play with a white doll or a black doll, over half of these black children rejected the black dolls and preferred the white doll. Although, I couldn’t find the citation for this, I know that this study was repeated within the last 15 years and the results we not markedly different.

The literature is full of similar examples of internalized racism and low self-esteem on the part of the recipients of racism.

All of these suggest that racism had it’s desired effect of developing a feeling of inferiority among Blacks and allowing Whites to have a sense of relative superiority.

Let me turn to another consequence of racism, marginalization. In the book, about the AIDS in the African American community, Boundaries of Blackness, author Cathy Cohen, advances the theory that marginalization has had a major impact on shaping the response of African Americans to the AIDS epidemic. Marginalization refers to people who have systematically and continually denied access to dominant resources, barred from full participation in dominant institutions and defined as "others’ living outside the norms and values agreed upon by society. A condition of marginalization is deficiency in economic, political and social resources used to guarantee access to the rights and privileges assumed by the dominant group members. Additionally, marginalizations carries with it the sense of social ostracism and stigmatization and evolves from involuntary vs voluntary separation from dominant society. The shared experience of the marginal group —including their inferior or subordinate identification, reinforces the importance of this identity in determining the common interest and view of reality. Some examples would be African Americans, Native American/American Indians, South African blacks and Untouchables in India.

In her book, Dr. Cohen goes on to describe consequences of marginalization, two of which I will describe in more detail because of their relevance to this topic:

• First, an altered worldview — a worldview develops from the position as an outsider: one who is fully familiar with the workings of the dominant society but denied access to full participation. When information is processed through this framework, one come to understand the central components of the dominant society, but usually approaches its institutions, organizations and leaders with distrust and skepticism. Life experience tend to reinforce this view since the dominant society generally deals with the marginalized populations in ways only further destroy a sense of trust.

• Second, the development of indigenous institutions, information and leaders. Because dominant society institutions, information and leaders are inaccessible to the marginalized group, these groups tend to turn inward, redirecting their resources, trust, loyalty towards community-based institutions and relationships that directly address their needs. They rely on indigenous organizations, leaders, networks and norms to provide some version of the resources and information unavailable from the dominant society. Through this evolves a political and group consciousness that is derived from these alternative structures. Marginal groups, having been conditioned to view dominant structures with distrust, turn instinctively to the indigenous sources of information for ways to understand and process their experiences.

Given some of this backdrop, let’s examine the responses and reaction to the AIDS epidemic.

• Escape from stigma

• "Once question of blame and responsibility for the disease intruded into the public discussion, it was clear that AIDS would become political in a way that is unprecedented for a disease in modern times. The vehemence with which homosexuals were attacked for the disease… obscured the reality that this was a new and very dangerous epidemic disease for which no on could be held responsible in any real sense… Neither blame nor guilt is a useful response to an epidemic."

• One suggestion was that the African monkeys, possible carriers of AIDS, were imported into Haiti and kept as pets in male brothels."

Statements like these heralded the era of the blaming and shaming. We would soon witness a torrent of theories that all intentionally unintentionally furthered notions of shame and blame of Africans and linked Africans to monkeys and perpetuated ideas of hypersexuality and immoral behavior of Africans.

The book Blaming Others is full of statements from respectable media and journals such as this one from a noted AIDS researcher in the quoted in the New York Times:

• "I think AIDS is an old Black African disease which was introduced somewhere or other into an amplification system–for example the promiscuous segment of the homosexual community"

• "Monkeys are often hunted for food in Africa. It may be that a hunting accident of some sort, or an accident in prepartion for cooking, brought people in contact with infected blood. Once caught, monkeys are often kept in huts for some time before they are eaten. Dead monkeys are sometimes used as toys by African children"

• "Sir: The isolation from monkeys of retroviruses closely related to HIV strongly suggest a simian origin for this virus. He goes on to say that several unlikely hypotheses have been put forward such as in his book on the sexual life of people of the Great Lakes areas of Africa, Kashamura writes (English translation) "to stimulate a man or a woman and induce them to intense sexual activity, monkey blood was directly inoculated in the pubic area and also the thighs and backs. These magical practices would therefore constitute an efficient experimental transmission model and could be responsible for the emergence of AIDS in man.

• Previously we have reported populations difference in sexual restraint such that higher socio-economic status>lower socio-economic status, and Mongoloids>Caucasoids>Negroids. This ordering was predicted from a gene-based evolutionary theory……in which a trade-off occurs between gamete production and social behaviours such as intelligence, law abidingness and parental care. Here we consider the implications of these analyses for sexual dysfunction, including susceptibility to AIDS. We conclude that relative to Caucasians, the populations of Asian ancestry are inclined to a greater frequency of inhibitory disorders such as low sexual excitement and premature ejaculation and to a lower frequency of sexually transmitted diseases including AIDS, while populations of African ancestry are inclined to a greater frequency of uninhibited disorders such as rape and unintended pregnancy and to more sexually transmitted diseases including AIDS.

Perhaps, extreme, but nonetheless, published and considered reasonable by some, that there is in fact a genetic basis for unacceptable social traits.

Okay, let’s turn to the issue of marginalization and it’s impact on the response to the HIV/AIDS epidemic particularly related to belief in alternative views.

• "As an increasing number of African-Americans continue to sicken and die and as no cure for AIDS has been found some of us are beginning to think the unthinkable: Could AIDS be a virus that was manufactured to erase large numbers of us? Are they trying to kill us with this disease?

• A 1990 Survey by the Southern Christian Leadership Conference: 35% of Black church member that responded to the survey believed that AIDS was a form of genocide.
• Another New York Times/WCBS TV News poll done in the same year –10% of Black Americans thought that the AIDS virus had been created in a laboratory in order to infect Black people and another 20% believed that it could be true.

• "We Americans continue to value the live and humanity of some groups more than the lives and humanity of others. That is not paranoia. It is our historical legacy and a present fact; it influences domestic and foreign policy and the daily interaction of million of Americans. It influences the way we spend our public money and explains how we can read the staggering statistics on Black Americans’ infant mortality, youth mortality, mortality in middle and old age and not be moved to action."

1. First is the challenge of unemployment and poverty
2. Second is our trade opportunity with the European Union
3. Third is the challenge posed by AIDS
4. Fourth is our need to ensure that we are investor friendly
5. Fifth is the role of information in the global economy
6. Sixth is the concern about the speed of delivery
7. Seventh is the work under way within the National Economic Development and Labour Council formulate an accord of growth and development between government and our social partners.
8. Finally, recognize the dangers of fragmentation

• First they start by questioning the status quo and conventional wisdom
• Secondly they raise the issue of the profit motive of the "AIDS establishment"
• Third, they question the sexually transmitted nature of the disease and the issue of hypersexuality or deviant sexuality of those who get the disease
• Fourth they posit that poverty and disease of poverty are truly the cause of so-called AIDS
• Fifth, they highlight some of the flaws in early AIDS research, especially around testing and estimates of numbers of people infected with HIV and
• Sixth, they highlight the imperfection and side-effects of current AID treatments

• "And I immediately had an unworthy thought: Oh boy. After years of covering AIDS in Africa, where millions of children don’t have a prayer of getting the same drugs---not to mention the children dying of curable things like sleeping sickness or malaria–I finally get to write about white kids with AIDS. Now we’ll see what happens."
• He goes on to write "And it did. Offers to help buy drugs for those poor white children have poured in."
• A caption in the article reads: "If you’re a child with AIDS and you live in Europe, the world will feel your pain.

• Here in the wealth West, we have antiretroviral drug cocktails which prolong life, improve quality of life, and serve, as it is, to save life. We have the drugs. We use them. In the developing world, where 95% of the new infections occur, virtually everybody HIV positive is doomed to a gruesome and painful death. The numbers of people who can afford the drug cocktails are so infinitesimal as to be invisible.
• But it’s worse, much worse. Neither the pharmaceutical companies who have the drugs, nor the governments who have the money, nor the governments who could amend their laws to make cheap generic drugs available, are prepared to prolong or to rescue African lives.
• Admittedly, it would be no easy matter to monitor and treat large populations of infected people through health delivery systems that are often in tatters. But you could still reach a significant number. The fact that we’re not prepared to try is a miserable commentary on the human condition. Let me put it as simply and bluntly as possible. The drugs exit and the money is available to prolong and improve the lives of millions. Some would live a full life-span.
• Jeff Sachs, the noted Harvard economist, says that there are generic drugs which could be imported from India to treat the majority of HIV-positive Africans for $350 per person per year. If we have the political will, this is no question that we have the money.
• Then why isn’t it being done. And because it’s not being done, why doesn’t it amount to murder? Mass murder.

First we must see ourselves as allies and partners, albeit, partners that may be coming with different historical baggage.

What must whites do–listen, believe and be open or whites need to get with it. In the book I Heard It Through the Grapevine: Rumor and Resistance in African American Culture-underscores the importance of listening and not ridiculing the theories that may seem far-fetched to those in the mainstream.

• Rumors reveal much about what African Americans believe to be the state of their lives in this country
• Such views reflect Black beliefs that White Americans have historically been and continue to be ambivalent and even hostile to the existence of Black people.

If Whites need to get with it, Blacks need to get on with it. Slavery, segregation, apartheid and colonialism are over. Only Africans and the descendents of Africa can work through the issues of stigma, shame and low self-esteem and move on. This is not easy, the impact is not imagined, the playing field is not even and racism is not over. However, as a world society we are not where we were even 20 years ago. We have to be willing to let go of anger and be willing to drop some baggage. A lot has been written about breaking the chains of mental slavery. That has to be done. We can build on indigenous structures to build greater sense of self-esteem. We can insist that we be treated as whole citizens. Effectively utilizing the indigenous structures that have developed in response to marginalization can be a powerful force for positive change in African American community and in Africa. We have a lot of strength. It is what has helped us withstand the difficulties of an alienating, often hostile environment. We can build on those strengths. For example, one of the most positive developments in our work in HIV prevention has been developing capacity of community-based organizations to work within their own communities. This is helping to empower communities, building important links and greater trust with dominant society structures and builds on relationships of trust already in the communities. More still needs to be done. However, only by setting the goal of addressing past wounds and moving on will this be accomplished. The past is real, but the future can better.

Let me end with a quote from Albert Einstein that aptly characterizes the challenge we are faced with:

• We can’t solve the problems of the world by thinking on the same level that we were thinking when we created them.

It is clearly time to move to another level in our understanding and in our response.