#REVISITED: AIDS and the most vulnerable in India

Photojournalist Nick Danziger is traveling with author Rory Maclean to eight countries as part of the #REVISITED project – where they are documenting the impact of the Millennium Development Goals (MDGs), and how progress, or lack of progress, can inform the post-2015 development agenda.

Jeeva

When I first met Jeeva – from Chennai, India – in 2005 she described her anger that, as a transsexual, she wasn’t recognized by the authorities. Jeeva explained transsexuals were denied identity papers, so she self-published her own documents stating she was a ‘third gender’. Jeeva, like many transsexuals, had migrated from a rural village to live in a slum community in the city.

Jeeva explained, “We are forced to either beg or take up sex work. We have no alternative as no one will give us a job.” Casual sex work puts them in danger of contracting HIV/AIDS and transmitting the virus to multiple partners. According to Jeeva, in the northern part of Chennai there were 2000 third gender sex workers, most of who had unprotected sex and had not been tested for HIV/AIDS. She said even if they had been tested, no one would admit to being HIV positive.

By 2010 Jeeva’s dreams were being realised, the state, one of the few in India, had recognised transgender people, granting them offical papers as a result. This had opened many doors to mainstream life for them, including starting businesses, qualifying for loans and access to tertiary education. Jeeva explained that changes had also resulted in removing many obstacles to having stable partners, therefore reducing sexually risky behaviour and the spread of HIV/AIDS. Jeeva was not only running a transgender website, but had gained a BA in sociology and wanted to get a degree in law.

In 2014 India became the first country in the world to recognise transgender people as a legal third gender. This year the country’s first openly transgender mayor was elected in Raigarh, a district in the central Indian state of Chhattisgarh.  In 2015, Jeeva continues to advocate for transgender rights as well as give advice on safe sex, venturing out to the city’s railway station and along Marina Beach. To ensure that the local government take her seriously, she has formed the Transgender Rights Association to support and protect her community.

Mumtaj, Ayaz, Aftab and Mehak

When I first met Ayaz – also from Chennai – in 2005 he had left school to support his family. A year prior to our meeting, Ayaz’s father had developed a fever and chronic cough. He was admitted to hospital where he developed mouth ulcers so severe he couldn’t eat. He grew weak and died after a few days. At the time, Mumtaj, Ayaz’s mother, didn’t know he had died of AIDS – she didn’t even know about the illness. Both she and Ayaz’s six-year-old brother have tested HIV positive, but Ayaz and his two-year-old sister tested negative. 

Ayaz was earning money by sorting second hand clothes for his uncle’s business – a 10-hour shift brought home 10 rupees (US$0.22). Ayaz’s mother was searching for work, and wanted more than anything for Ayaz to study, but couldn’t live without his income. Ayaz’s mother founds it difficult to accept her status, “Being a woman of faith, I wondered, ‘why me?’” she said. “I was very angry with my husband as my younger son was also infected. I want to provide my children with a good life for as long as I can.”

Five years later in 2010, thanks to a neighbour and teacher who had tutored Ayaz and supported the family, they had overcome some of their worst hardships. Ayaz, like his younger brother, had been sent to spend time in an orphanage. However, he was back home during my visit to look after his younger sister while his mother received antiretroviral treatments.

Although Ayaz had missed four years of schooling, he was now one of the top students in his class. Ayaz missed his family, and his mother admitted she found life very challenging without the extra income.

On my most recent visit in 2015, I found Ayaz had once again dropped out of school to work fulltime. Mumtaj had just spent 21,000 Rupees – about five months’ wages – to pay for the celebration of Meheq's coming of age. It was far far more than she could afford but she was determined to show that she and her family were well, and not victims.

Selvi, Ajid Kumar and Kousalya

Selvi had contracted AIDS from her husband Mohan and was terminally ill when we first in 2005. She had two children: Ajid Kumar an eight-year-old boy and Kousalya a six-year-old girl. In early 2004, Selvi gave birth to a male baby, who died from undernutrition at just four months old. Mohan was a daily wage labourer and her son ran errands for a teashop. 

In order to make money, Selvi rented out her shanty house for 150 Rupees (US$3.40) per month. This meant the family had to sleep on the street, but were allowed ‘home’ to cook and to store their belongings.

On my second visit in 2006, I discovered Selvi had developed a tumour in her neck. Her husband, who was no longer around, didn’t want to take her to hospital, so she went alone. She confined in me her greatest concern was: “What will happen to my children when I die?”

Only a few weeks after I left, Selvi grew very seriously ill. Her daughter attempted to flag down several rickshaws to take her mother to hospital, but unable to pay, they refused. Selvi died several hours later next to her two children. Mohan returned to look after his children.

In 2010 Mohan was receiving antiretroviral treatment, but as he explained, “I can’t take it as I don’t have enough money to eat regularly. I have to decide whether to feed my children or myself to prolong my life to help them.” Unknown to Mohan, he repeated the same words his wife said to me five years previously, “What will happen to my children when I die?”

Five years on, Mohan is still alive and shares his hovel with Lakshmi, a widow, along with his Ajid Kumar and his son's wife, and her younger brother. Beneath the filthy tarpaulin roof of their home is gathered all they own in the world: bedding, a few clothes, three cooking pots, an electric fan and a television, gifted by Yashoda’s parents. Electricity for their single light bulb is bought from a neighbour who steals it off the grid. At night all five must sleep side-by-side to fit into the house.

Kousalya, now 17, lives 100 kilometres away in Pondicherry. Within two years of Selvi’s death, Mohan had remarried and sent Kousalya to a care home. Her teenage years were spent in care with the expectation that – when she was old enough – she would return to help to support the family. But Kousalya found she was happier living away from home, especially after she was hired as a nanny.

In her new home she began training as a beautician. “I like it better here,” she confessed. “I sleep in a cot, not on the hard earth. I eat paella and butterscotch ice cream. When I go home I am always hungry.” Her choice had estranged her from her brother Ajid Kumar, particularly since his wife Yashoda had become pregnant. 

Orphanage for HIV positive children

Eight children between the ages of three and twelve lived together with their teacher in the last house in a street at the end of the neighbourhood. In 2005 no other orphanage would accept these children because they were HIV positive. Even the neighbours complained about their presence.

The children’s teacher was also HIV positive. She explained to me, “Everyone stays away from us; our families, our neighbours. I hope that society will change so that my daughter can see her father. I am sure it will take time, maybe 10 years. I know where my husband is, but I think my mother-in-law told him I am dead.”

She had difficulty answering the children’s questions, “They go out, eat, study, but they know something is wrong. ‘Why are we here?’ they asked, ‘Why are we outcasts?’ ‘Why can’t we go to school like other children?’”

When I asked the deputy director of the school how long the children will live in this house, he replied, “Until they die.”

When I visited five years later the orphanage had moved – they had been forced out by neighbours. However, the director of the orphanage had found a school that allowed the children to attend class. The orphanage had also grown from 8 to 13 children, but once they’re back from school, they kept to themselves, playing indoor games rather than outdoor games because of the local hostility to them.

Their original teacher had been able to move in with her mother and sister and had found an new job. However, she explained wouldn’t dare to admit that she was HIV positive at her new job for fear of being immediately dismissed.

Conclusion

In India, just as I’ve witnessed around the world, people living in extreme poverty are also those most likely to face numerous forms of discrimination. As I found in Chennai, being transgender or living with HIV/AIDS often results in the ‘ghettoisation’ of these communities, which, alongside limited access to social services and the loss of employment opportunities, results in unrelenting impoverishment.

Issues surrounding discrimination and stigmatisation of vulnerable communities must be addressed by the sustainable development goals. As in the case of transgender people in Tamil Nadu, new laws are a first step towards protecting individuals and communities from discriminatory practices – which can in turn lead to employment, safer practices in health care and economic stability for individuals and their families.