Desiree Edghill M.S., continues to wage war against HIV using the Arts

Nov 24, 2019 News, Special Person

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“We have moved from where people were fearful to come and get tested, to people now coming and announcing ‘I come to know meh status’. People are coming with their partners before they start having sexual intercourse to ensure that they know each other’s status.”

By Sharmain Grainger

Guyana, like many other countries around the world, has long been waging war against the dreaded Human Immunodeficiency Virus (HIV). If left unchecked, HIV can develop into Acquired Immune Deficiency Syndrome (AIDS) with the potential of wreaking immense havoc on a nation.

While the battle has been unrelenting here on the part of government, its technical partners and other stakeholders, to the point where many have been tested and placed on treatment, it wasn’t always an easy task to raise awareness about the disease. This is in light of the fact that many people had a strong aversion to talking about this disease that they were convinced was also transmitted by those who were especially promiscuous.
Many people were unwilling to give a listening ear to the fact that the disease could even be transmitted through other means such as breast milk, and by using needles used by an infected person. Some even conjured up the myth that the disease could be spread through the bites of mosquitoes or by breathing the same air as an infected person.
However, a novel but tactical move was introduced some years ago which succeeded in grabbing the attention of many people, causing them to surrender to HIV/AIDS awareness efforts.
A MASSIVE MOVEMENT
This instrumental shift was allowed to blossom over the years into a massive movement which has helped many persons to accept that HIV doesn’t have to be met with stigma and discrimination.
Among those who helped to unleash this movement was Ms. Desiree Edghill M.S., the Executive Director of Artistes in Direct Support (AIDS), a Non-Governmental Organisation (NGO). Since 2001, Edghill has sat at the helm of the NGO which was named by deliberately playing on the acronym AIDS to raise awareness about the disease which, at the time, was seen as a deadly affliction.
Edghill, whose passion was and still is the Arts, was thrust into HIV Awareness work after one of her colleagues and best friends, Keith Andre Sobryan, fell victim to the disease 30 years ago. Sobryan, an openly gay man who was also a prominent artiste, was diagnosed in 1989, and, as the story has been told many times, at the time there was no treatment to prevent his condition from escalating to AIDS.
But according to Edghill, even in the face of brutal stigma and discrimination, Sobryan wanted the public to know that the disease was here in Guyana and that there was need to take precautions against it. He saw using the Arts as an avenue through which awareness could be most effective.

“He brought a group of us together in the Arts, because we were already doing drama and people were listening to us, and so we would be the best people to start addressing HIV,” Edghill recounted.
Many artistes were taking the disease especially serious since, according to Edghill, “a number of the people who were being diagnosed were people in the Arts. Our first three cases were gay men in the arts – dancers all three of them – and then him [Sobryan]. He wanted people to know right away that we were dealing with AIDS, but the stigma was horrible at that time.”
COMMITTING TO THE FIGHT
Through drama, the artistes started in 1992 to raise awareness. Their first production, ‘One of our Sons is missing’, was staged at the National Cultural Centre on December 1, 1992 [World AIDS Day of that year].
Although their dramatic performances were known to draw large crowds, that show, Edghill recalled, barely attracted an audience of about 50. “People didn’t want to go near any place that was testing for HIV or anywhere near people who were doing HIV work; they were fearful that people might say that they too were HIV positive,” Edghill recalled.
But this wasn’t going to put a damper on the work that needed to be done. With some support and a percentage of their proceeds from their plays, Edghill recalled how she and her colleagues would travel to various parts of the country just to raise awareness about HIV through drama.

All this time, Sobryan was valiantly fighting for his life. But then one day, there was no more fight left in him. Sobryan passed away in the year 2000 due to complications caused by AIDS. But before passing, Edghill remembered how he pleaded with her to continue the HIV work.
“He made me promise to continue the work while he was on his dying bed and I promised that I would. We were not registered all those years as an organisation; we use to fund productions from our own pockets…when we did plays, we would put aside an amount and we would go and do awareness. Some people started to take us to the regions, sponsor us, put us up, feed us, and we would go and do awareness work. At that time, we were just dramatists performing, and we used to take someone from the GUM (genitourinary medicine) Clinic, which is now the National Care and Treatment Centre, to answer questions about HIV,” Edghill shared.
After becoming a registered organisation in 2001, the NGO trained its first batch of Peer Educators to advance its work. “At that time, you could have seen AIDS; even people who had HIV said they had AIDS because we weren’t educated enough to understand the difference between the two,” Edghill added.

CRUCIAL SUPPORT
Even though it evolved to incorporate other HIV/AIDS-related work such as pre- and post-counselling, as well as testing, the NGO continued to use the Arts to raise awareness. In fact, it has come a long way in this regard, whereby it is now able to have a capacity audience at the National Cultural Centre to stage what has become an annual World AIDS Day production.
“We have to give credit to USAIDS, which started the first major HIV project in Guyana. In 1999, USAIDS wanted to do a project in Guyana on HIV and AIDS, and they went to the government which told them go to civil society. So they chose six organisations, including us. Even though we were not yet registered, because we were doing work through the arts and people were listening, they wanted us to be a part of that project, and that was the HIV/STI youth project. This was owing to the fact that a research was done and revealed that the majority of those infected were young people, and so the first set of people we targeted were young people. We used to call it the ‘Ready Body Project’ and the theme was ‘Ready body, is it really ready?’”
The theme for that project was created by Sobryan, and it certainly helped to gain traction among the youthful population – the target audience. The passionate contributions of the artistes involved, including the likes of Edghill, whose roles were well recognised, perhaps was instrumental in ensuring that Artistes in Director Support, to this day is a recipient of funding from USAIDS. In fact, the services of the NGO is currently being contracted by government for an ongoing pilot project aimed at continuing the fight against HIV/AIDS.
REAL LIFE STORIES
“We have moved from where people were fearful to come and get tested, to people now coming and announcing, ‘I come to know meh status’. People are coming with their partners before they start having sexual intercourse to ensure that they know each other’s status. People are coming to get tested before they get married to ensure that they are safe for each other. Before, people used to call us the ‘AIDS people’ when they saw us… If I go to a funeral, people would think the person who died, died from AIDS because there was this stigma. I still have that stigma attached to me up until this day, even with all the education we have done…but we have come a long way,” Edghill said with pride. She is the proud recipient of a national award [Medal of Service] for her contributions to the fight against HIV/AIDS.
While productions premised on fictional stories have helped over the years to amplify the reality of HIV and AIDS, Edghill noted that it is usually those drawn from real life issues that can be the most impacting. Although some of her plays have been based on the lives of persons infected or affected by HIV and AIDS over the years, she confessed that none compared to the one that was based on her own experience.
It was shortly after the passing of Sobryan, Edghill said, that she decided to visit her husband, who resided abroad, to seek comfort. Instead, she was confronted with evidence of infidelity and for a period of her life feared that she too could have become a victim of the dreaded disease. Although she was cleared of any sexually transmitted diseases, the experience, Edghill recalled, was a “…wake up call. I wasn’t willing to take any more chances with my life and so I left my marriage.”
As part of her coping with that experience, Edghill wrote a play, ‘What did I do wrong”, which was based on her own story. “It was about having a relationship and trusting, being faithful, and still you can contract HIV… I made the wife in that play contract HIV and I was in such a state to direct it…the actress was asking, ‘Why is she so passionate?’, ‘Why is she so angry?’ I was telling her ‘you are not giving me what I want’…that was because I was seeing my story play out in front of me. In a way, I think it was a way of me dealing with it and healing from it too,” Edghill reflected.
Although still etched in her memory, that phase of her life is no longer a burden, rather it has helped to make her an even more ardent activist who will continue to use the Arts to demonstrate just how impacting the sting of HIV and AIDS can be.
Moreover, to mark World AIDS Day 2019,  persons will be treated to yet another epic play at the National Cultural Centre, which Edghill will ensure fully embraces this year’s theme: ‘Communities make the difference’.

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