Responses to HIV & AIDS
An international photo-led project 1993 ~ 2018
We knew we were struggling through momentous times, but understanding exactly what the moment meant was difficult as we drowned in the crescendo of anger and protest that was almost the only political (and in some instances, the only clinical) tool available to us until the mid 1990’s. So it is with tremendous pride that I look again at the narratives and messages that were so carefully sculpted by the photographers of the Network agency with such subtlety, insight and power between1991~1993 in the miserable heart of the epidemic.
At that time in the early 1990’s the narrative of “planet AIDS” was told mainly in 80-point headlines which severely limited information, carried little nuance, and drowned compassion in a sea of populist cant. And yet as soon as one scratched the surface it was hard to find anyone without some connection to the epidemic. For some it was the solitary terror of nights alone in hospital, or the bewilderment of parents, the courage of carers, the ripped-out-hearts of partners, befuddled educators, or confusion caused by the cruel rhetoric of ignorant politicians. For millions the epidemic was understood as an entertainment enjoyed with callous glee in the writings of tabloid journalists who created a bête noir and stuck it daily with manufactured outrage, pitiless wit and hateful slander. Everyone was touched by the epidemic. While busily disclaiming involvement and accountability, all of society had a finger on the pulse and everyone contributed to the sickness that ravaged society. In 1993 I wrote in the forward to the first book,
“A medical condition has become a social condition, and we are all required to form a response and to accept a responsibility – whether by action, thought, or by simply trying to understand.”
So it was that the photographers chose to investigate the deep penumbra of pain beyond the wretched experience of the then unmanageable condition. “Positive Lives – Responses to HIV” became the core of the investigation, which over 15 years spread beyond the UK to over 50 venues on six continents. In each new territory work was commissioned to reflect the local conditions – always fear and stigma were key in the distribution of services and information, but expressed in so many different ways. Curiously the first time the project seriously stubbed it’s toe on an unseen hazard was in its first home, the UK, dealing with what appeared to be the least ambiguous subject. For the section on intolerance, portrait photographer Steve Pyke (MBE[i]) made simple unembellished portraits of several prominent figures who had delighted in making obnoxious observations about the epidemic, each portrait accompanied by their own words of record. Sir John Junor[ii] sat for his portrait that was accompanied by his words,
“It is said that by shaking hands with patients in an AIDS ward, Princess Diana showed that that the disease need not make them into social outcasts. But since each had only his homosexual promiscuity to blame for the disease, isn’t that exactly what they should be?”
Others came forward with equally repugnant and unhelpful observations, all exactly quoted. And yet this was the section that was challenged with a defamation suit. It seems that the great and powerful felt uncomfortable rubbing shoulders (curatorially at least) with those they condemned. But linked they were, although fearfully reluctant to be judged by those they judged. The chapter “Another View” ran but in a somewhat shrunken condition. It was a life lesson that sometimes those that seem the strongest can be the weakest.
Once again I feel the anger that fuelled those relentless protests. I fear that the solution is not as simple as remembering; many of us remember the worst of the epidemic and contemporary records abound, as they do for so many humanitarian crises. Memory is not at issue. Rather it is our own psychology that will cause this and other catastrophes to repeat, and against which we must maintain permanent personal vigilance.
A quarter century later I still refer to Gideon Mendel’s work on The Ward, with particular reference to an image of parents Ken & Patsy sitting either side of a hospital bed that couched their son John and his partner Michael. We published the image shortly after John died and the parents had a brick through their window. Pain upon pain, and I immediately withdrew the image from circulation. And so it stayed for a full 30 minutes until Michael called full of fury that I had overridden John’s deliberate wish that his death should not pass in vain and that these images must be seen as widely as possible. He was right of course and the image was published again on the cover of the 1993 book, becoming an icon of the social and emotional struggle faced by the least expected victims: ordinary working class heterosexual parents in East London. I reflect often on this decision in the recurring context of the frequently confusing ethical conflicts thrown up by photojournalism: sometimes the ethical way forward is against the immediate interests of the people in the picture and that the prevention of pain isn’t necessarily the driving consideration. There can never be a rulebook on ethics even though each new generation argues the need for defined clarity. Life can never be that simple and the confusing thing is that now, just as then, life must be lived forwards even though it can only be understood backwards.[iii]
In one of those strange twists of fate we met Patsy again, a quarter of a century later in 2017 when she arrived unannounced at the Middlesex Hospital having seen a report of Gideon’s exhibition on national television, and once again Gideon photographed her standing with pride by her son’s bed.
For those that made it to 2018 I have an intense embrace, and for the many who didn’t, I have too many tears and gratitude for what they taught me about fighting the odds.
[i] Member of the Most Excellent Order of the British Empire, “a British order of chivalry, rewarding contributions to the arts and sciences, work with charitable and welfare organisations, and public service.” (Wikipedia)
[ii] Editor of the Sunday Express, London, 1954 to 1986
[iii] Søren Kierkegaard, philosopher, 1813 to 1855 (in paraphrase)
This essay is dedicated to Robert Grieve who gave us the brilliant title “Positive Lives”. Robert died in 2011 without the recognition he deserved for branding this huge and complex project so succinctly.
An edited version of this essay was printed in The Ward (2017). the latest iteration of the Positive Lives project. The book and associated exhibit featured Gideon Mendel’s photographs made originally in 1993 at the Middlesex Hospital, home to the UK’s first ward dedicated to AIDS care. The exhibition marked the 30th anniversary of the ward’s opening by Princess Diana and was shown in the Fitzrovia Chapel, the only physical presence left remaining.
“Positive Lives” was initiated jointly by Lyndall Stein of the Terrence Higgins Trust with Stephen Mayes and the photographers of the Network agency, London. From its UK inception in 1991 and its initial launch in 1993 the project evolved with exhibits in over 30 countries on six continents with new work created specific to each territory. The project was in active production for over 15 years, creating an extraordinary document of the epidemic around the world and across time
Extraordinary appreciation is due to the Levi Strauss Foundation whose vision and commitment sustained the project from its inception, and to the Elton John Foundation for their relentless support and generosity. Special recognition is due for all the photographers of the Network agency and the many other remarkable photographers who worked tirelessly and with little reward, and to Kevin Ryan who drove the international expansion of the project. Most importantly we pay tribute to the hundreds of individuals around the world who risked everything at a time of ultimate vulnerability to share their stories in the photographs that now form a lasting testimony to their suffering and courage.