NGO fighting HIV through the arts looks to unusual sources as funding dries up

As HIV became a major epidemic in Guyana, a group of creative minds came together many years ago to use what they do best—the arts—to help to fight the scourge that was becoming a health burden and attacking persons of all ages, genders and status.

The arts community was also seeing some of its own being stricken with the disease and it was in a desperate attempt to make an impact that Artistes In Direct Support was formed. Initially, its major work was based on sensitizing the population about the dangers and the harmful effects of the disease.

Fast forward 24 years later, the non-governmental organization (NGO) is still around and its work over the years has expanded to include counselling and support, with HIV prevention remaining its pillar. Its main founder, theatre personality Andre Sobryan, succumbed to the disease in 2000, but his work in the area has been instrumental.

Desiree Edghill
Desiree Edghill
Artistes in Direct Support using drama for AIDS awareness
Artistes in Direct Support using drama for AIDS awareness

Desiree Edghill is the only founder who is still with the NGO today and she serves as Executive Director.

With international funding for HIV drying up, other means have to be found to sustain the NGO and where better to look than the arts. According to Edghill, since the NGO “came from the arts, we said we would go right back into the arts from where we came.”

The recent staging of the play Brixton Stories was the first official fundraising project for the organisation and while it was not as successful as they would have liked, the first step of the journey was taken.

“We want to bring that kind of theatre back. There is room for it and I am going to grab that opportunity,” Edghill said in a recent conversation with the Sunday Stabroek.

In the next play, a “ticklish” subject would be touched, Edghill said, the sexuality of the over-50 woman.

“It is something that I wanted to address for a long time because we have that culture in Guyana of older men with younger girls. So when our husbands are gone what are we doing? So we got to get with the programme,” Edghill said with an almost wicked smile and a simultaneous click of the fingers.

She wants women to know when they get to 50, it is then that they have the “time, the place and the expertise and so we can do it too.” All of that will be in the adults-only play, with Edghill herself in the lead.

“I want to deal with the double standard of your children accepting their father going out there [while] the mother has to be this old hag in the house with these children and stay with them and they [grow up] … and have their lives and she is left alone,” Edghill said.

Andre Sobryan
Andre Sobryan

Importantly, she wants to address the issue of “throwing yourself down” and how women allow themselves to be “that old hag” when their husbands would have married a “sexy woman.” She, however,  did acknowledge that many times it happens because women have to care for and mother the children as well as work.

Also on the cards in the near future are some Jamaican plays to be directed by Edghill.

‘Ready body’

A significant part of the organisation’s work has over the years focused on men who have sex with men. Sobryan was from that community and Edghill said before he died he begged them not to “give up on the men who have sex with men because eventually the toy soldiers are going to come tumbling down. And I did see that happen because the key population is men who have sex with men and the sex workers.”

She recalled that initially they were not funded and used their own money to continue their sensitization, which sometimes led to them being invited to perform regionally. The organisation was also not registered for years and therefore, when funding from USAID first came through the pipeline, the money had to be funnelled through the Guyana Responsible Parenthood Association. For years, the organization has been funded under the PEPFAR programme and this continues, along with some additional funding from other organisations. However, that funding is now given on a year-to-year basis, unlike when it started and five-year contracts were signed.

‘Ready body; is it really ready?’ was the first event hosted by the NGO after funding was provided and Edghill recalled that the theme was coined by Sobryan as it was felt that it could be used to draw persons, many of whom at that time were hesitant to attend HIV prevention events. “They turned up and found out it was an HIV programme but they did not leave because it had an entertain segment,” Edghill said.

In 1992, Edghill said, “…A lot of people in the arts” were being diagnosed with AIDS. She said Sobryan suggested forming the organisation after he revealed his status to them, reasoning that “people were already listening to us on stage.”

The other founding members were Margaret Lawrence, Dr Paloma Mohamed, Don Profitt and Robert Narain.

The organisation’s first public foray was on December 1, 1992, World AIDS Day. Since then, its now well-known production The Flame and the Ribbon, is always held on December 1.

Speaking about Sobryan still makes Edghill visibly sad. According to her, his friendship was “the greatest relationship” she has ever had. She recalled that when the group’s first funded event was to be held, she was caring for him and had told him to stay home “because he had gotten so small and I did not want people to see him that way.” But just before he programme started he walked in and with crossed arms indicated to her not to approach him. “That was his last progarmme, he died one year later,” Edghill said sadly.

“He was my soul mate. Apart from being someone in the arts, he was my… ‘bestest’ buddy. I have never had a relationship with anyone like I have had with him…,” she said.

‘Infidelity’

For Edghill, the year Sobryan died was one of the hardest she had experienced as she not only lost him but her then husband.

Before he died, she said, Sobryan had discussed the focus of the World’s AIDS Day programme which was on infidelity and how husbands and wives can pass on the virus to each other. He had instructed her to write a play, even though at that time she had never written one. She took up the challenge, but first decided to travel to the US to be with her then husband only to find out that he was being unfaithful.

“It was just ironic that I had this play to write. I knew it was going to be about infidelity and to know what I was going to write about I was experiencing it. And so I wrote my own story…” Edghill said. She recalled, “I was writing and he was typing. It was crazy. We were fighting,” she said; the play was called What did I do wrong?

She said the script was being sent home as she wrote and he typed, so that the actors and actresses could start learning their parts. For her to find out about her husband’s infidelity at that time, she said, was like “pushing the knife into the wound and turning it” and it may be the reason she did not work on saving the marriage, because even though she did return to the US one last time to her husband, she could not continue with the relationship.

“I couldn’t, because every time he touched me I was thinking here I was in Guyana telling women to be careful and there I am going to the US to a man having unprotected sex, putting myself at risk…  and it scared… me,” Edghill said candidly.

Her husband could not understand why she walked away, but Edghill said she could no longer trust him and since she had just lost a friend to AIDS, she did not want to die. “Because I saw what it was… to live to die; to lie on a bed and get bed sores and can’t move and I didn’t want to go there,” she said.

Artistes in Direct Support then became the “place to go” and Edghill said she threw her all into the organisation.

Over the years, her passion has been to groom young people as she confessed that she did not think she did “a lot of grooming with my own children.” As regards the young persons who worked with the organisation, she said, “I am proud of every single one of them and what they have achieved.”

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