My first encounter with the AIDS Quilt was in July this year.
The UK sections of the AIDS Quilt were part of a global project to commemorate lives lost to AIDS. I was at an event in the Houses of Parliament organised by Positive East, London’s largest HIV charity. Positive East offer a range of vital services to HIV positive people, have celebrated their twenty-fifth anniversary this year, and are also a part of the UK AIDS Memorial Quilt partnership.
The partnership consists of a number of charities which are seeking to preserve and display the AIDS Quilt. The Positive East event was in one of the large glass panelled rooms, which overlook the Thames. Doors open out onto the river and guests were thronging on the balconies. Meanwhile, I was transfixed by the AIDS Quilt panels inside.
A group of panels was laid out in the middle of the room. They are not easy to display. Each panel is, typically, just under two metres by one metre. The panels are sown together in groups of approximately eight or nine. The names of patients, their dates of birth and when they died, many harrowingly young, are picked out. Some panels are simply designed, whilst others feature complex embroidery and even photos. The quilt panels were roped off, at about knee level. More so than a marvellous Renaissance tapestry or antique Iranian carpet, they tell us about the age in which they were made. At one point, the lives of gay and HIV positive people were not just threatened, there was a fear we might be driven to extinction. HIV gripped our community, tearing lives apart.
This year, the weekend following World AIDS Day, the AIDS Quilt was on display at a number of venues on the AIDS Quilt Trail. The trail featured thirteen different venues and temporarily showcased the UK panels of the AIDS Quilt. Two groups of panels were on display at St Anne’s Church in Soho. There was one panel commemorating a young man named Mark William Tyack. Mark was born on 10 August 1964 and died on 7 June 1991, at the age of 27. His panel is simple, but beautiful. Monochrome, it includes a portrait, as well as a poem written by his sister.
The panel commemorating John Phillips, who was born on 1 July 1948 and died on 9 February 1990, was equally moving, but very different in style. This panel is densely populated with symbols representative of John’s life, which explode outwards in a riot of colour. Amongst other things, John loved cricket, chemistry, his motorcycle and Coco the Clown. He was great to be around, as attested on the panel by his friend Hugh. Elaine’s name is silhouetted against a bright pink background. She was born in March 1969 and died in March 1991, when she was roughly 22 years old. Jamie died when he was just a baby. He was born on 4 March 1993 and died 83 days later on 25 May 1993.
I was born in May 1985 and was diagnosed as HIV positive in January 2010, when I was 24 years old. I am now 31 years old and, like most HIV positive people living in the UK, I will have a normal lifespan. The revolution came in 1996, with the introduction of antiretroviral medication. The medication I take is now so sophisticated that it is virtually side effect free. Now, five per cent of people accessing antiretroviral medication in the UK are over 65 and one third are over 50.
The demographic around HIV is changing. One of the challenges we face is how to best support people ageing with HIV. It is wonderful that HIV positive people can now lead long and happy lives. World AIDS Day, on 1 December, is a day of remembrance, as well as hope. The AIDS Quilt sums this up perfectly. The panels seek to celebrate the lives of those represented, drawing out the characteristics which gave them their individuality. Every panel is different, a celebration of human life, individuality and of hope.
This was the first time in years that the panels have been on display. Some panels are in need of conservation. Positive East were able to show a number of the panels very effectively at their centre in East London. They are as fragile, as they are precious. We need to find a permanent solution for the display of the panels. They are an important part of our history.
During the festive period, we must not forget people living with HIV. At Christmas time we celebrate the birth of Jesus, who changed the world, over 2000 years ago. As an HIV positive gay man, I am fortunate to lead the life that I do now. If Jamie, the baby commemorated on the AIDS Quilt had lived, he would now be 23 years old. How would he have spent Christmas this year? HIV/AIDS has created voids in the lives of many families. Over Christmas, I will be thinking and praying for those families, in the UK and globally, who have lost loved ones to AIDS and for those living with HIV.
To learn more about the AIDS Quilt, check out aidsquiltuk.org, or search #AIDSQuiltUK on social media. Please also check out positiveeast.org.uk, where you can learn more about the great work Positive East are doing to fight HIV.