Activism is “keeping your feet on the ground”

Loon Gangte

Loon Gangte, co-founder of the Delhi Network of Positive People (DNP+), ITPC coordinator for South Asia, and winner of 2020 Elizabeth Taylor Human Rights Award, talks about how DNP+ was formed over cups of chai; providing a lifeline during lockdown; and how true leadership is about really listening to what a community needs.

Interviewed by Gemma Taylor.

“I am from a traditional family in Manipur. The way we were brought up was to respect our elders, irrespective of their income or education. If someone is even just six or 12 months older than us, we refer to him as ‘brother’.”

“My principles have remained true to my upbringing, but I won’t bow down when it comes to treatment,” says Loon. “Our goal is very simple – to get medicines into peoples hands.”

Loon is known for his no-nonsense approach, and memorable, impassioned pleas which he makes on behalf of communities he’s elected to represent: “You can trade whatever you want – my belt, my pants, my shoes –“ he said during one speech, while starting to remove his belt and shoes, “but you cannot trade with our lives”.

During a protest, attended by treatment activists from all around the word, demanding access to affordable medicines. AIDS 2018, Amsterdam.

“Dignity in leadership is important,” says Loon. “But we ourselves can become a barrier. I am not here to preserve my tradition or any religion. I am elected by my community to be their voice, their mouth. It is not about what I, Loon Gangte, think. Whether we like it or not we need to listen and hear, without modifying.”

“If the national AIDS programme (NACO) director gets get pissed off, I’m not concerned, so long as my community gets what they need.”

“I will kick you or kiss you to get what the community needs. If there’s no treatment, I will kick you. If the community gets treatment, I will kiss you.”

The only treatment was a hug

Loon moved to Delhi in 1997 to attend the Sahara Rehab Centre. The demand for services was great. “There was meant to be 25 people, but there were more like 100-120 people at any given time. At night, every floorspace, every stairway, every terrace was packed.”

Loon also worked at the Sahara Michael’s care home for HIV positive people, first as a volunteer for a year, then as a staff member for seven.

A couple of months after arriving in the city, Loon himself tested positive for HIV. There were occasions when he was admitted to hospital. “Each time, above my hospital bed there would be a big ‘HIV’ sign in red letters. If you complained they changed it to ‘BIO HAZARD’,” he laughs.

Not that Loon was ever in hospital for long. “They kicked me out eight times. There were no HIV medicines, so they’d either kick you out or call for other doctors to come and look at you like a rare baboon!”

Back at the Sahara Michael’s care home, Loon and other colleagues were caring for the people that hospitals refused to admit. “We provided care 24/7 for 30 people.”

Sahara Michaels care home, Delhi, where Loon volunteered and then worked from 1997 onwards.

“There were no ARVs, no treatment, no cure. We’d play guitar, share a smoke. The only treatment was a hug.”

“We’d advised people to eat well, exercise, pray. But, all these things, the virus doesn’t understand – and so we continued to die like flies.”

“This was the ‘pre-ART era’. During this time I would be at the cemetery four, five, six times a month.”

Loon with his wife and two young boys.

The Sahara director (for both the rehab centre and care home) was Neville Selhore. “He was the greatest human being on earth,” says Loon, reflecting on Selhore’s legacy.  “We all talk about empowerment, yet others cannot be in your place, but with him it was true empowerment. He made people better than him.”

“When I started at Sahara were no doctors, no nurses, we learned to do everything ourselves. By the time I left there were 11 nurses, two doctors, and 40 care workers.”

During Loon’s time at Sahara a homeless child moved in. “No-one was turned away. I ended up adopting him.” The child Loon took care is still very much part of his family. “He visits every Christmas and holiday, and he worked with DNP+ for four years”. Loon and his wife have two younger sons, aged 13 and eight.

DNP+ origins

“I still remember the afternoon. It was around 3pm when the four of us would go walking. There was small park just behind the clinic.”

“We bought two cups of chai and two extra cups so we could share between four.
And DNP+ was born there, over a chat. It was about being there for each other.”

It is a story you know that Loon has told many times before, and there’s a good reason for that – his immense pride.

It was 1999 and this was symbolic. It was a time when many people were afraid to share cups or plates with people living with HIV. Here were four equal friends, and DNP+ founding members. There was no hierarchy, not then and not now.

“We just wanted to be able to share, to listen to each other without judgement. That was why we formed. We didn’t know about funding or projects.”

Loon recalls getting the first large project up and running after some help was offered by an NGO outside of India. “We got lots of funding, and suddenly we were up, but just as quickly we nose-dived. After this we decided to restrict ourselves. Slowly, slowly we grew, this time we had less but then, we are never f***** again either.”

DNP+ just celebrated its 20th year.

Feet on the ground

“Activism can be very far from the ground. Masses of donor paperwork, for example – this will keep your head in the clouds – I prefer to keep my feet on the ground.”

“DNP+ was offered funding one time but not for the outreach workers – they are my eyes, my ears, my hands, and literally my feet.  You can’t do community work from your office under a fan. We turned the funding down.”

The first time DNP+ hit the streets.

Lockdown lifeline

During the repeated lockdowns of 2020, DNP+ became the hands and feet for the community, getting on motorbikes to deliver people’s medicines to them.

DNP+ deliveries of essential meds were a lifeline for people living with HIV, Hep C and other illnesses, during Indias lockdowns.

“The ARV hospital stayed open but the problem for people was how to reach it. We delivered regularly for 50 days, and as lockdown restrictions eased up, we continued for people who couldn’t rely on neighbours or family.”

In DNP+’s classic style of being preoccupied with the job at hand, and less concerned about data and documenting, Loon says: “We recorded about 400 deliveries, but it was probably more like 700.”

Loon, along with his DNP+ peers, are matter-of-fact about their work. They are simply doing what they see needs to be done. DNP+ are determined to reach who they need to reach, to change what needs to changed, with or without external support.

DNP+ is focused on access to treatment beyond India also. Loon personally has taken essential treatment to Thailand, where the same drugs were prohibitively expensive. He recalls one time when he got stopped and searched: “I told the official, this is not my first time. But it is not business.” He explained: “The pills are sold to people in Thailand for the same price as I bought them in India, because people can’t afford to buy them to save their lives in Thailand. If saving lives is a crime, then I’m ready to confess.”

“If saving lives is a crime, then I’m ready to confess.”

He was fined 1000 Thai baht. This was roughly equivalent to the price of just one pill in each of the 86 bottles he was carrying – and which he walked out of airport with. “So it was worth the risk. It’s not that breaking the law is my favourite thing, but if obeying the law means that people die then, well, I guess it is my cup of tea.”

Loon’s activism was globally recognised last year, becoming the 2020 recipient of the Elizabeth Taylor Human Rights Award at the 23rd International AIDS Conference, AIDS 2020 (6-10 July 2020). The biennial award recognizes the efforts of individuals who have achieved major breakthroughs or shown exceptional courage in their efforts to advocate for human rights in the field of HIV. Loon was recognised for his contribution to increasing access to treatment and fighting for the rights of people living with HIV and related illnesses.

“I’m happy, but I’m not so affected by things like this. The best award is that people are alive today.”

Treatment is everything

“A human being’s needs are many. However, for a person living with HIV, their one main concern is suppressing the virus.”

“That’s why I’m focused on treatment. I was before I became ITPC’s coordinator for South Asia, and ITPC has helped me to refine.”

“Focusing on stigma and discrimination, or politics, be it Trump, or Modi or Brexit – this can’t suppress the virus – only ARVS can. I no longer visit the mortuary or cemetery 5 or 6 times a month, it is more like once every 5 to 6 years. We’ve come a long way.”