AIDS SUTRA: Untold Stories from India edited by Negar Akhavi, foreword by Amartya Sen, with an introduction by Bill and Melinda Gates. Anchor Books: New York, October 2008. 352 pages. $13.95
Drugs can neutralize a virus or ward off a disease, but they can’t cure ignorance. For the millions in India infected with HIV, the discrimination they face can rival the pain of any medical symptoms. Unfortunately, AIDS remains a moral judgment in the eyes of many Indians, a punishment invited by impure lifestyles, dealt to society’s outcasts, the unwanted and the forgotten. Such misconceptions are the topic of many narratives in AIDS Sutra, a collection of essays highlighting the challenges and human scope of India’s AIDS epidemic. Contributors include luminaries Salman Rushdie, Kiran Desai, Vikram Seth, and William Dalrymple.
In a lucid introduction, Nobel Laureate Amartya Sen argues against the simplistic prejudices often associated with the disease, illustrating the many cultural forces obscuring the true magnitude and diversity of those infected—forces which, consequently, facilitate the virus’ spread. Foremost, Sen writes that heightened awareness must be accompanied by more inclusive notions of responsibility: “… we have to stop blaming the victims,” he writes, “and stop leaving them to look after themselves. We are in it together.”
The need for societal responsibility is further emphasized by the varying geographical and socio-economic demographics of the individuals discussed in AIDS Sutra. Though many stories concern sex workers, for whom the virus is an occupational hazard, the collection is not confined to them. From wives infected by unfaithful husbands to truckers cruising India’s national highways, from the river banks of Andra Pradesh to the remote communities of Manipur and the upper echelons of Bombay society, the stories of India’s AIDS epidemic are as diverse as its people. Unchanging, though, are the barriers of shame preventing the afflicted from seeking proper medical care and preventing others from protecting themselves from infection. Ultimately it is this silence, the taboo surrounding the virus and its victims, whichAIDS Sutra seeks to break, ushering in greater awareness of the cultural, economic, and medical impact of this hidden killer.
The opening tale, “Mr. X Versus Hospital Y” by Nikita Lalwani, particularly upsets the stereotypic image of the HIV-positive in India, relating the legal troubles of Nagaland physician Dr. Tokugha. His infection, revealed by a test prior to a blood donation to a family member, leads to a broken engagement and a new stigma. Lalwani is sensitive to the totalizing nature of Dr. Toku’s infection: “Whenever he uses the word ‘status’ to refer to the result of the blood test,” she writes, “it feels so collapsible as a word … I have an idea of his ‘status’ in society before he found out that his blood was marked in this way … After the revelation of the blood test … he becomes a man whose whole status is HIV positive, nothing else.” Like many others inAIDS Sutra, Dr. Toku discovers new inspiration and a second life in advocacy work, particularly in his personal struggle to overturn a legal decision denying the HIV-positive the right to marry. In the same vein, he begins a matchmaking service for his patients, illustrating that love—like life—mustn’t end with infection.
This marital aspiration is uniquely realized by the subjects of Kiran Desai’s “Night Claims the Godavari.” Among the Kalavanthalu of Andhra Pradesh—who trace their lineage to temple courtesans, the erotic consorts of kings—the mangalsutra wedding necklace is a sign of independence. Formerly the brides of Shiva, the modern Kalavanthalu are ritually wed to their aunts, leaving them free agents to earn a living in the oft-lucrative sex trade. The mystique of old, however, is replaced by the tawdry modern world, in which a deadly virus and the decay of tradition mark the Kalavanthalu trade. Even less fortunate are their professional sisters, the common street prostitutes for whom sex with migrant workers and long-distance truckers supplies their children a roof and food. Nevertheless, Desai ultimately denies the title of her piece, for even such hardship cannot entirely extinguish these women: “The emotions of love and friendship, you’d assume would be missing or rotten, in these communities—,” she writes, “existing even more so for their being sought amidst illegality, fragmentation and betrayal.”
With tradition like the Kalavanthalu, but in an entirely different vein, are the transgender hijras of Salman Rushdie’s “The Half-Woman God.” Rushdie’s story, along with Mukul Kesavan’s “Nowhere to Call Home,” illuminates the diverse plights of male sex workers in India, who face the double stigma of both their profession itself and its manner. As noted in Sen’s introduction, Section 377 of the Indian Penal Code, a holdover from British imperialism, continues to criminalize homosexual acts, leaving male prostitutes on the fringes of society. Despite such marginal status, Rushdie’s hijra sisterhoods draw strength from their community, just as Kesavan’s subjects, united in their advocacy work for a local NGO, find support among others dispossessed by society. These stories, too, highlight the complexity of AIDS epidemiology indicated by health care research, in which a husband’s congress with male sex workers can lead to a wife and child’s infection.
The consequences of these diverse routes of infection are demonstrated in Jaspreet Singh’s “Ghost Stories,” which recounts the challenges faced by AIDS orphans and children, infected by maternal transmission, who are often expelled from school systems if their status is revealed. Repercussions from disclosure might explain why, according to the World Bank and UNICEF, India is home to the most AIDS orphans worldwide, and effective health care measures will clearly require the stigma associated with these children to be lifted. Similar sentiments confront Jayanthi in Nalini Jones’ “Love in the Time of Positives.” Infected by a dishonest husband, Jayanthi finds herself shunned by her in-laws and society, but she discovers new hope and even a new husband through her association with an NGO. Jayanthi’s story underscores the powerful ways in which community organizations can both help slow the spread of HIV, as well as offer inspiring purpose for those already afflicted.
Other stories in this collection travel far geographically: Aman Sethi’s “The Last of the Ustaads” follows a veteran trucker and his understudy along National Highway 31, revealing a transient lifestyle in which wayside brothels are a common feature. Here, too, is demonstrated the economic aspects of the epidemic referenced in Sen’s introduction: highways and their truckers form a main artery of infection, lending government decisions to support rail or highway routes an additional point of consideration. When the cost of AIDS is factored in—the human cost, healthcare expenses and others—a fiscally responsible highway expansion can become a monetary sinkhole made worse by insufficient national understanding of the disease.
This economic cost is further expounded in Siddhartha Deb’s “The Lost Generation of Manipur,” which describes the depressed northeastern province’s culture of troubled, drug-addicted young men. Here, the burden of the disease is amplified, with lack of economic opportunities lending themselves to despair and intravenous drug use, spreading the virus and depriving Manipur of the development opportunities represented by its youth. Here, again, the AIDS epidemic is complex, with effective action requiring an understanding of reverberating effects both on individuals and society.
Within the tapestry of stories in AIDS Sutra emerges an image that, while often marked by hardship and fear, is nevertheless hopeful. The collections’ many infected and un-infected subjects reveal an India coming to terms with a health epidemic, replacing ignorance with greater knowledge, and eschewing the stigmatization of the individual for communal action. While the HIV-positive of India may not yet have a cure, they now have a voice.
Proceeds from this anthology from Avahan, an initiative of the Bill & Melinda Gates Foundation, will go to support children affected by HIV/AIDS in India.
Joseph Babcock is a PhD student in the Cellular and Molecular Medicine program at the Johns Hopkins University School of Medicine.