It’s World AIDS Day and the time to revisit the sirens of Mumbai — the sex workers, bar dancers, trans men and women who walk the shadowy alleys of the maximum city, or provide pleasure in corners of packed rooms. They inhabit a subterranean world acknowledged by few, yet frequented by many.
For most, they are unmentionable, but for me they were wise friends, tenacious, brimming with beauty and resilience. These women and men lived their lives and met challenges lightly, scarred but dignified, lighting up conversations with their stories. Some danced gracefully in the city’s now closed dance bars. And all were experts at the sexual game that humans love to play.
Our first meeting was in a small room in Dharavi, under the impartial gaze of a Ganesha idol. I was keen to hear their stories and they were anxious to be heard. Their lives could pale any script into insignificance. Except this was no television series, but their fight to survive.
As India’s HIV infections declined, their stories have been forgotten. Yet, they imparted invaluable lessons about public health, human behaviour and ending epidemics, as well as compassion and hope.
Working alongside them revealed a critical truth: Even the best strategies falter without grassroots engagement. Top-down approaches failed to resonate with diverse high-risk communities. The key to ending an epidemic lay in uniting diverse high-risk groups, combating stigma and discrimination, and enhancing the quality of life for these communities. People’s lived experiences must define strategies.
Attempting to address a disease without acknowledging its social, economic, and cultural contexts is futile. Conversations with these communities illuminated the multidimensional aspects of human sexuality, desire, and behaviour change. Every issue had human, economic, and social dimensions. Educating sex workers about condom use, for instance, proved ineffective without engaging with other stakeholders.
Each of them had a story. Someone needed health services, another needed a child admitted to a school, a third needed protection from an exploitative family. People lived complex lives that demanded holistic solutions.
What did we learn about public awareness and information? Our efforts were sub-standard. When we don’t provide sufficient information that is engaging, culturally sensitive, and localised, misinformation grows and guides behaviours.
It is widely believed that the poor and vulnerable do not care about their health and well-being. In fact, poor or at risk populations are deeply invested in their health. They value health information that is relevant, localised, integrates well with current cultural and social situations and is entertaining.
While science provides solutions, collective action and will are equally critical. As we witnessed with HIV — but also with Covid-19 — people have to become stakeholders and partners in developing, designing and implementing health strategies. We can develop robust treatments and even vaccines, but until we build public trust that generates collective support and action, epidemics can persist.
For effective health strategies, the most vulnerable must come first. Vulnerable communities have a harder time accessing health services, their care is often inferior. Also, they are more likely to face discrimination. So health strategies that don’t work for them rarely work at all.
Activism is the kernel around which change can grow. In India, even today, marginalised groups face mistreatment and it is activism that can make care equitable and accessible.
Finally, these communities taught me that nothing works like dignity and equity in public health. Strategies guided by these values build trust, respect and ownership. Before they want diagnosis and treatment, marginalised communities want dignity. They were insightful about what constitutes well-being and prevention. Free health services or drugs weren’t enough, health must come with dignity, and empowerment. “It’s my body. Tell me what to do. Don’t dismiss me because of what I do,” a male sex worker told me.
Every day I spent with them taught me something. Ours was a shared vulnerability — we were all at the margins of this world. Our walks aka “business trips” at night, where they promised to find me a “top class” man, were instructive. The men who dished them abuse during the day, flocked to them in the dark. To the world, they traded their pleasure for money. In truth, they offered healing, satisfaction and affection for very little.
They could teach so much to those in health policy or disease experts in TB, Covid-19 or other disease areas about respect, dignity, and human behaviour. They certainly gave me life lessons in self-respect, desire and love. One told me, “Death and disease come to everyone but it’s the hate that kills you first.” I wonder where they are now, perhaps lost to the endless grind of an urban metropolis. Perhaps, they are in a corner of Dharavi, laughing and telling the story of the absurdity of life itself. If only we would listen.
The writer is a public health expert
