The HIV Book Project: Artists & Advocates

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Fierce Inspiration
The HIV Book Project Celebrates Australia’s Long-Term HIV Survivors And Those Recently Diagnosed
by Hank Trout

No corner of the planet was spared the ravages of the Plague Years, those horrible fifteen years from 1981 through 1996, when AIDS raged around the globe, uncontrolled, uncontrollable. Australia certainly was not spared. Although abc.net.au News reported on August 20, 2017, that “[t]he number of Australians being diagnosed with AIDS each year is now so small…the Australian Federation of AIDS Organisations have announced the age of the fatal syndrome over,” those folks who lived through the worst of the Plague Years in Australia and are still living with the virus might beg to differ.

Roy Wilkins (left) and Phillip Shipton, creators of THE HIV BOOK PROJECT

Such folks as writer Phillip Shipton and photographer Roy Wilkins, and all the women and men who contributed to The HIV Book Project, a 140-page collaborative work documenting the lives of twenty HIV-positive people from a diverse range of backgrounds, using interviews by Shipton and photography by Wilkins to explore the realities of their living with the HIV virus since the 1980s. Completely peer-driven, the project was “conceived, coordinated, photographed and documented by HIV positive people,” a point of pride for Mr. Shipton.

“I tested HIV-positive on the 5th of June 1987, I was eighteen years old,” the writer told A&U. “HIV was devastating the gay community in Sydney and many people were scared to death of it, mainly because of a sensationalist government public service campaign called the ‘Grim Reaper’ campaign…I’d only had a few sexual encounters at this stage, one of which was not consensual, and I believe it was this instance in 1986 that I became infected as it involved blood….The reaper campaign and friends convinced me to have a test and to my surprise and dismay it came back HIV-positive.”

Zainab Alig Kahiye, diagnosed 1998, Botanical Gardens

As did many young men newly diagnosed, Shipton began a downward spiral of “depression, shame, worthlessness and multiple suicide attempts.” Fortunately, he began volunteering with several volunteer groups in the HIV community, including the Bobby Goldsmith Foundation, the Gay and Lesbian Counselling Service, Support of Positive Youth and others; in 2016 he started volunteering with The Ankali Project, a publicly funded group that, since 1985, has trained and supported volunteers who provide emotional and social support for people living with HIV, many of whom are isolated in the community, subsist on welfare benefits, and in some cases have suffered multiple chronic illnesses or mental health issues. The name “Ankali” comes from an Aboriginal word for “friend.”

It was at The Ankali Project that Shipton met Roy Wilkins in 2016.

“Roy is an avid, enthusiastic and talented photographer. I asked him one day if he would be interested in an idea I had floating around in my head of photographing and interviewing HIV-positive people to get a contemporary view of HIV in the context of their experiences, to show people that living with HIV is now very different from the Grim Reaper days of death and illness. He said yes!”

Yasser Ibrahim, 2014, Aubu

Diagnosed as HIV-positive himself in 1984, Wilkins told A&U, “I was studying to be a Naturopath and Medical Herbalist, Homeopath, Clinical Nutritionist. I was specializing in HIV and was using myself to experiment on. I had broken out in a really bad red acne rash all over my face but still I studied on. I think that it was that fortitude that prolonged my survival. The positive attitude I had.” Unfortunately, Wilkins said, the diagnosis isolated him further from the gay community as “the Other,” leaving him with only a few straight friends and his boyfriend of twenty years. When Phillip mentioned putting together a book of photographs and interviews documenting people’s lives with HIV, “I said yes, we should do it. Suddenly I felt I had drunk rocket fuel because I had so much love and energy to accomplish this project.”

As the thirtieth anniversary of the World AIDS Day commemoration and the fortieth anniversary of the Sydney Mardi Gras both occur in 2018, to Shipton and Wilkins the book seemed like a timely artistic representation of the social history highlighting the significant changes that have occurred since the early days of HIV, its impact on their communities, and where they are today. They were right.

Richard Watkins, diagnosed 2016, La Pero

The two began work in earnest in March 2017. Shipton wrote “business, process, marketing, finance and other plans for the idea. I submitted it to my peers at the Ankali Project who reviewed it and generally agreed to support us….I set up a Facebook page, an email address, started printing fliers and distributing them to doctor surgeries, gay businesses and HIV-focused support services and organisations around Sydney. It wasn’t long until we had our first applicant.” Shipton and Wilkins wanted the subjects of the book to come from backgrounds as diverse as possible to represent the broadest spectrum of people living with HIV in Australia, both long-term survivors and the newly diagnosed. At first, HIV-positive women were the most reluctant to come forward, but Shipton “was very lucky to meet two wonderful outgoing and inspiring HIV-positive women who feature prominently in the book, one of whom is on one of our three book covers.” Of the twenty subjects interviewed for the project, “One gentleman wanted to share his story with no photographs or identifying information. We agreed to do this as it represents the fear still evident in today’s society towards HIV-positive people,” Shipton told A&U. Most participants, however, “found the entire experience a cathartic one that helped them on their journey to come to terms with their own HIV diagnosis.”

Dianne Nyoni, 2011, Marrickville

Shipton interviewed all twenty subjects and then transcribed over 100,000 words from the tapes. He whittled that treasure trove down to 60,000 words; another editor cut the text down to its current 41,000 words. “Phill and l contacted each other constantly about the book design, color and whether we should have the images in black and white or color or a mix of color and black and white images, paper type, quality, dust cover design, cover design etc.,” Wilkins told A&U. “I was ecstatic in the realization that I was accomplishing my true heartfelt dream in helping others through my fine art photography and doing it selflessly as not-for-profit to help others.” With a Givenow fundraising campaign and the technical support of Positive Life NSW, an HIV advocacy group established in 1988, Shipton raised the necessary funds to self-publish the book. Although the book was finished and published in August 2018, the official launch date was October 2, 2018, with a concurrent photo exhibit that ran through October 16, 2018, at the Surrey Hills Neighbourhood Centre. Shipton and Wilkins have also finalized a deal to provide images and text for an exhibition displayed in hospital foyers that will showcase the imagery and stories from the book along with other HIV-related information, such as a timeline of HIV history.

For this writer, one of the most striking entries in the book is the interview of Tobin Saunders. With Robert Planter’s good looks, he is a performer, writer, choreographer, dancer, actor, DJ and events coordinator/producer from Ballina. For twenty-plus years he has been involved in theater works, production and performance at Mardi Gras, in fashion parades, and film. He has also choreographed, hosted and performed numerous events in Sydney. Diagnosed as HIV-positive in 1991, Saunders’ trajectory from terror-filled newly diagnosed patient to dedicated advocate is one familiar to many of us. First came the shock and the fear (in 1991, AIDS was still a death sentence for many), then came the shame and being ostracized as “the Other,” then acceptance and the determination to prevail. Saunders has been through that wringer and come out stronger and more determined. “It’s not been a bed of roses. I have lived with acute anxiety driven by being stigmatised as homosexual and then as someone with HIV. I probably had it when I was very young and got bullied by the big yobby boys at school who saw me as a target. But I also have this kind of ‘Fuck you! You’re not going to win!’ attitude. I’m a bit of a fighter.” Like many of us, he has found contentment and happiness in a serodiscordant relationship. Also, like many of us, he proclaims that HIV has made him a stronger man. He brings that fighting spirit to his advocacy.

Tobin Saunders, diagnosed 1991, Darlinghurst

Readers who have read my writing in this magazine know how strongly, how adamantly I feel the urgency for us survivors of HIV to tell our own stories, to record our own history, in our own words and on our own terms. The HIV Book Project has made an important contribution to that history. With photographic images and attention to our own words, Shipton and Wilkins have done an invaluable service to all of us who care about the accurate rendering of our history. I heartily applaud them for it.

If you are interested in purchasing a copy of The HIV Book Project from the Bookshop Darlington, please log on to: www.thebookshop.com.au/new-releases/the-hiv-book-project-note-3-different-covers-to-select-from-see-below/.

For more information on The Ankali Project, please check out http://napwha.org.au/organisation/ankali. Information about Positive Life NWS is available at: www.positivelife.org.au/.

Hank Trout interviewed cabaret artist Russell Deason for the October issue.