By Maya Tessema / go back to Third Issue

Akhavi, Negar, ed. AIDS Sutra: Untold Stories from India. New York: Anchor Books, 2008. 352 pages. $13.95. ISBN: 978-0307454720.

All of Us. Director: Abt Emily. Producer: Abt Emily and Reva Goldberg. Featuring Mehret Mandefro, Chevelle Wilson, Tara Stanley. DVD. Pureland Pictures, 2008. $24.99.

“Human ordeals thrive on ignorance.”   Amartya Sen, AIDS Sutra Forward

The book AIDS Sutra: Untold Stories from India is a collection of true stories gathered by several Indian novelists, including world famous authors Salman Rushdie and Kiran Desai, who went to various regions in India that are particularly vulnerable to AIDS to speak with those who are directly impacted by the growing rate of HIV infection.  This collection is part of a large scale project created by the Bill and Melinda Gates Foundation to understand the lives of those with AIDS in India through their own stories. The movie All of Us, on the other hand, is a documentary by filmmaker Emily Abt that takes us on journey throughout the Bronx in New York to explore the situation of AIDS in the African-American community, primarily among poor women.

suturaThe book and the film are connected by several recurrent, interrelated themes.  First, both works assert that in order to get a more comprehensive and truthful assessment of the reasons for the widespread infection rates of HIV in communities of color, field testing and statistical analysis (though essential) are not enough.   Instead, individual and collective stories must be told to give flesh to statistical bones.  Secondly, the two works demonstrate that these stories show us something that statistics alone cannot tell us: HIV/AIDS flourishes where there are imbalances in power between two or more parties. Power imbalances can be obvious, such as the neocolonial relationship between Africa the West, but power imbalances can also be subtle, such as the intimate relations between a man and a woman.   Dark people the world over, from the Bronx to Delhi to Borena, experience the very painful consequences of these different kinds of imbalances.  The next theme that both the film and the book share is that those imbalances are further fueled by misinformation and stigmatization by those with very little real information, so by telling stories and speaking truthfully, we can face the disease with knowledge and empathy.   This leads us to the last theme: these works of art show us there is hope when communities come together and address the various issues around AIDS truthfully, openly, and without judgment.  We in the Oromo community have not mastered this openness yet, and these works can help us learn how to deal with the epidemic better.

In AIDS Sutra, the various authors included in this anthology interviewed community leaders, doctors, patients, sex workers, children, and adults who want to provide the best life possible for their families; their goal was to learn more about their lives with HIV/AIDS.  Because of globalization, Indian society is experiencing rapid economic upheaval that allows these diverse groups of people to come into contact with each other, which ultimately increases their exposure to sexually transmitted infections like HIV.  The stories that these people tell about themselves or those they know can shatter stereotypes about who contracts the HIV virus, how they do so, who helps them cope, and their success.  In many of these stories, the narrator speaks of how the subjects were marginalized from their “original” communities because they were either disowned by family members and/or communities, or these people could not face them upon learning their status.  For example, the first story in the book deals with a doctor who is passionate about helping those in his village cope with AIDS.  What he shares with the writer of his story is that he was rejected from that same community for being HIV positive.  At that time, he did not know his own status because of a breach of confidentiality, when his soon-to-be father-in-law was told before he was.  He was ultimately rejected by his community, but courageously came back to treat those who are now in the position he was in – with care, confidence and empathy.  So when their families or communities reject them, they are either lost without a community and left to engage in even riskier behavior, or they join other communities for any kind of support they can get; in the case of the story above, some fight their way back into their communities and do good work.

all of usIn All of Us, we are introduced to Director Emily Abt’s good friend, Dr. Meheret Mandefro, a young, Ethiopian-American resident at a hospital in the Bronx, New York.  She in turn introduces us to two women, Chevelle Wilson and Tara Stanley, who are HIV positive and part of her new study on what economic and cultural factors surround and ultimately determine a medical problem.  She asks why poor, black women in the city are so susceptible to contracting the HIV virus.  The official statistic used in the film is that 68% of new cases of HIV in the U.S. are found in black women, although black people account for only 10% of the nation’s population.  When embarking on this study, Dr. Mandefro does not realize how deeply personal her research was about to become.  As she learns more about these women through her research and hears them tell their stories, she comes to understand that there are imbalances in power in their intimate relationships with their male partners, and this deeply affects the decision-making capacity of these women.   This causes Dr. Mandefro to think about the dynamics of her own relationship with a man that she is seeing.  She has an epiphany when she realizes that she does not always practice what she preaches when it comes to safe sex. She then becomes motivated to research how widespread these imbalances in power relationships are, where typically the woman is disempowered.   To learn more about this, she asks her economically-privileged and well-educated friends about the power dynamics of their intimate relationships and receives surprising answers that mirror the situation of the poor women.  Then, in America and in Ethiopia, she sought experts on HIV transmission about the role of gender, and they told her essentially the same thing—the empowerment of woman is crucial to the prevention of this disease.

Dr. Meheret, as she is also called, is Habesha, and the book AIDS Sutra is about Indians.  What do they have to do with the situation of the Oromo in Oromia and in Diaspora? 

Dr. Meheret’s work can help us understand the forces within our Oromo communities that are perpetuating the spread of the HIV virus. These forces are not mutually exclusive from the forces outside our communities that also enable transmission.  Through her research, Dr. Meheret helps us understand that women in intimate relationships often experience psychological and physical coercion because of the extreme expectations placed on them: caregiver, instant gratifier, and object.  These expectations are downright demands for women of color in poverty, whose economic disempowerment puts them in positions where they have little say in decisions within their intimate relationships.  This particular type of imbalance of power –  the gender imbalance – is one of many inside of Oromo communities, and one of many that our communities have yet to face directly and honestly.  

In addition to these internal forms of power imbalance within Oromo communities, there are external forces such as migration due to work or resettlement because of political repression that can fuel the spread of HIV by changing power relationships. These geopolitical factors are not discussed in the film, but we can surmise that the upheaval of lives caused by these political forces creates situations that are fertile ground for risky behaviors and a lack of knowledge of one’s own HIV status.  In the situation of the Oromo, it is because of the disarray, withholding of funds and complete inadequacy of the Ethiopian medical establishment set up to treat HIV/AIDS in Oromia.  Also, Oromo political leaders seem not to be fully addressing how to combat the disease head-on; some members of the Oromo community may not understand the reasons why their leaders do not.  All of these factors contribute greatly to the spread and mistreatment of the disease, as Dr. Ibrahim Elemo discusses in his article in this issue of Ogina.  To work through these problems, the Oromo community needs to look at these causes carefully and find ways around the severe political limitations and forms of repression to make sure that their people are taken care of.  This, again, means being honest and strategic about what needs to be done, which includes reevaluating our political structures and how they address their community’s problems, which is detailed in Dr. Elemo’s book HIV/AIDS, Gender and Reproductive Health Promotion: The Role of Traditional Institutions among the Borena Oromo, Southern Ethiopia.

As for the stories found in AIDS Sutra, a reader might be tempted to say that they deal with “Indian issues” exclusively and they have no bearing on the situation of the Oromo; this is not necessarily so. Sure, there are cultural differences, but the bottom line is that developing nations are facing similar challenges – in this case, the prevention of the HIV virus.  In his forward to AIDS Sutra, the world-renowned Indian economist Amartya Sen, author of the groundbreaking book Development as Freedom, wrote, ““Human ordeals thrive on ignorance.”    This quoteencapsulates more than just the Indian response to the disease; it also underscores the way that many other groups, including the Oromo in Oromia and in Diaspora, have been confronting, or rather, have been avoiding dealing with AIDS.  While the wide cross-section of regions in India highlighted in this collection of stories were chosen because their  residents represent different groups that are at risk, similar groups of people could easily be found in areas of Oromia, whether we would like to acknowledge it or not.  Additionally, those Oromos afflicted with the disease face similar situations that are described in this book, like complete or partial rejection by their families or communities once their status is learned. Conversely, many people also renew their relationships and find strength in their loved ones and their communities. Because of these similarities, this book ultimately gives us some guidance on what approaches to prevention and treatment work and do not work, as well as suggesting how we might grasp the complicated emotional response.  For this, we owe a debt of gratitude to those individuals and organizations that were brave enough to tell their stories.   

It is easy for communities to turn a blind eye to AIDS, even when it is so close to them, as it is shown so heartbreakingly well in both AIDS Sutra and All of Us.  We can pretend that it is not there, and if it is there we can blame it on “irresponsibility” and “immorality” or as a punishment for sins committed. But if we did that – if we allowed ourselves to believe such easy explanations and to avoid the hard truth by condemning others – what we would be failing to understand is that it is we who are the ones being irresponsible and immoral.  We become overly concerned with keeping up appearances while those of us that need the most help are being ostracized.  If AIDS Sutra and All of Us can teach the Oromo anything, it is that communities cannot continue to alienate those who are affected by AIDS, let alone ignore it altogether.  Instead, as the book and the film show, when communities work out solutions with honesty and openness, they can create an environment that can ultimately drive the disease out of community and keep those who are afflicted within it.  Both the film and the movie provide examples of how to begin bringing those afflicted back in their communities, such as talking about HIV/AIDS in open forums.  The next step is to consider how to reach even more people with accurate information as well as outstretched arms of support, like many of the organizations, churches, and communities did in AIDS Sutra and All of Us.  How to address churches and mosques will be difficult, but it is necessary.  For Oromos, places of worship are where some share their problems, but we need to address that they may be resistant to talking about comprehensive steps to prevent HIV because of their views on premarital sex.  In both works, there are some examples of finding solutions by looking at ways other church communities have worked through the morally challenging issues surrounding prevention.  The people in these communities did not re-invent the wheel as they sought solutions to their problems: ethnic groups and nations all around the world are dealing with similar problems. Perhaps our communities can follow their examples and, as the song in this issue of Ogina says, “find a way.”

Maya Tessema is a legal assistant working and living in the Washington, DC metropolitan area.  She began participating in the creation of Ogina ‘zine through work in the Arts and Culture Committee of IOYA.