Experiences In Erasure

This collection of essays, supported by the Bill and Melinda Gates Foundation, brings together 16 writers, young and old, starry and less well-known, to explore the subterranean and often suppressed worlds of Indian HIV and AIDS sufferers—worlds that are sometimes quite closely linked to the realms that ‘normal, healthy’ Indians believe themselves to inhabit.

Data on the prevalence of HIV/AIDS is imprecise, and Amartya Sen, in an illuminating Foreword to the book, does his best to construe the available data into something like working figures. As Sen notes, factual claims about HIV/AIDS have resembled an "elephant’s burial ground", and even the most credible current figure of around 2.5 million affected Indians—a figure Sen endorses—is reasoned guesswork. That number might initially appear to be consoling, given India’s population of one billion. But there are at least two important considerations here. Socially, HIV/AIDS has highly disproportionate effects—certain groups of men, women and children are massively over-represented among those afflicted; spatially, it has affected certain regions—particularly the states of Maharashtra, Karnataka, Andhra Pradesh, Manipur—far more than others. In one-fifth of India’s districts, HIV/AIDS affects more than 1 per cent of the population—epidemic proportions.

Scattered between the catastrophist predictions and the ostrich-and-sand denials are the individual lives and deaths of those affected—each one a story to be told. Yet this experience exists largely in its erasure. People with HIV/AIDS suffer not just the physical condition, but social invisibility and stigma born of poor information and bad law. Consider that absurd relic of colonial moralism, Section 377 of the Penal Code, which seeks to criminalise homosexuality. This is a law which no decent society should tolerate, and we should abolish it immediately.

The commission of the writers assembled is to humanise the HIV/AIDS crisis, and they fulfil that charge with grace. If many of the tales have a staged air to them ("My three days with an NGO that initiated me into a new subculture"), almost all help to open our eyes, stretch our imagination, and throw us into unknown worlds, from the intricately hierarchical clans of Bombay eunuchs (Salman Rushdie) to the seedy domesticity of the Godavari sex workers and their clients (Kiran Desai), and to the truckers’ cabins on the UP-Bihar highways (Aman Sethi)—worlds we glimpse too through Prashant Panjiar’s photographs.

A prevalent view about HIV/AIDS is that it is caused by the sufferers’ own choices, yet what we see repeatedly in these stories is how few the choices are. Most of the people in these pages acquire the disease while trying to survive by doing whatever necessary, including hiring out their own bodies. Some were forced into high-risk professions as children. The word "options" barely applies. It is perhaps inevitable that this book is weighted toward the most innocent sufferers—the wife of the driver of the truck route, not the driver himself. But for a fuller picture of HIV/AIDS in India, it’s important to include in our social generosity precisely those whose sexuality, and personal volitions, make us uncomfortable.

The intense international and philanthropic focus on HIV/AIDS, of which this book is a creative instance, is not without its ambiguities. In villages and urban jhoparpattis, resources are now being diverted from other at least equally important concerns of public health and social fairness: chronic attritional conditions like malaria and tuberculosis, and the low-intensity ill-health experienced by those with access to only poor quality water. In the face of these less-publicised conditions—which affect a vast number of the world’s poor—it remains unclear to me that AIDS is in fact "one of the major problems facing the developing world", as a blurb for this book asserts. But there are many important public health lessons to be drawn from the AIDS epidemic and responses to it. Although governments across the world were initially slow to recognise its threat, subsequent mobilisations of the scientific and philanthropic communities have been impressive. Once an untreatable disease, it is now a manageable condition, and some nations, India included, are devising affordable and accessible treatment options that should be models for the management of other diseases.

Among the major work still to be done on HIV/AIDS, especially in India, is addressing the stigma. The abiding idea of HIV/AIDS as a moral stain is an extreme example of a national tendency: we mire our attitudes to illness in moral self-regard, social prejudice and intellectual confusion. Our impulse to ostracise should remind us how narrow is the extent to which we are willing to defend the ultimate value of a civilised society: the commitment to allow all individuals to exercise their own judgement in choosing who they want to be and how they want to live—especially when it comes to some of the most intimate of human activities.