It is hardly uncommon to hear horror reports in the news about the next permutation of avian flu or multi-drug resistant bacteria, accompanied by predictions of the dire consequences of these things. But regardless of how often we might hear or read about them, it remains very hard for most us to imagine what the arrival of a deadly, indiscriminating, and largely untreatable disease might actually mean, for each of us as individuals with lives to lead, and as broader societies. While we know such contagions are a threat to our health and wellbeing, it is harder to understand the profound social challenges and threats these would present, as the fear that unfamiliar disease so often brings with it causes people to turn against people.
The rapid spread of HIV/AIDS in the late 1980s can teach us many things, but the lesson which seems in some respects most important, yet least well learnt, is that of how stigma and fear tears apart lives and communities. Gideon Mendel’s new publication The Ward, published by Trolley Books, offers an often painful but invariably moving account of the terminal end point of these things. The Ward was photographed in 1993 for Positive Lives, a pioneering project which brought together thirteen leading photographers including Jenny Matthews, Paul Lowe and Judah Passow, to document different aspects of the emerging HIV/AIDS crisis. The resulting images were exhibited at The Photographers’ Gallery and elsewhere, and also published as a book. For his part of the project Mendel spent weeks photographing four patients and their families on the Broderip and Charles Bell wards at Middlesex Hospital in London, effectively the first dedicated wards for patients in the final stages of AIDS.
The wards had been open for five years when Mendel arrived to photograph on them, at a time when HIV/AIDS was still little understood, both medically and in wider society. Effective management and treatment of the disease with anti-retroviral therapy remained three years ahead in the future, an impossibly long time for many of those living with the virus. Stigma was also rife at virtually all levels of society. Shortly before the wards had opened in 1987 every household in the UK had received a now notorious government leaflet titled AIDS: Don’t Die of Ignorance, accompanied by a terrifying public information film which opens with imagery of an exploding volcano and ends with a tombstone engraved with the name of the disease. As later studies of the epidemic revealed stigma was as much responsible for HIV/AIDS spread as were other causes, with routinely repeated untruths about who was vulnerable meaning that many people were not aware they were at risk, or did not seek treatment for fear of what a diagnosis would mean for their standing and reputation.
What Mendel captures is a relatively safe space in this climate of societal fear and misunderstanding. Part of that climate of safety was the result of the remarkable work done by the staff of the two wards, who themselves faced considerable stigma because of their work. Jane Bruton, a sister on one of the wards, describes having to cover the plaque marking its opening and hiding leaflets on HIV in order to disguise the fact it was an AIDS ward and so protect the patients. In lieu of effective medications some of the staff felt their role to be as much social as palliative, offering friendship and physical contact to patients deprived of these things because of the fear of their disease. Bruton also reflects on her misgivings about allowing a photographer access to such an environment, so protective were her instincts for her patients, but notes two decades on how important this decision was for creating a record of this terrible moment between discovery and treatment.
In this sense then The Ward is a reminder of quite how far things have come, particularly in terms of the treatment and management of HIV/AIDS and in terms of the fight against the stigma still often held against those who live with it. But it is also, darkly, a reminder of how much remains to be done, that even in countries like the United Kingdom with a progressive outlook, misconceptions about the disease and its perceived causes remain. An individual’s openness about living with HIV/AIDS is still not as simple as it should be for what has become a largely manageable chronic disease, akin to conditions like diabetes.
The reduced threat of the disease and the distance of time since the introduction of anti-retroviral therapies also means that it has become all too easy for those of us who weren’t directly touched by these early years to lose the collective memory of them. But to allow these dark times to be forgotten is to sadly forget the remarkable strength of relationships and communities that even across the decades shine bright, perhaps all the more so for the darkness all around them. A cure for HIV/AIDS might even now still be some way ahead in the future, but if there is any cure for stigma it is warmth, compassion, human kindness, and that at its simplest is what Mendel has recorded, and is what his book contains. As Julian Clary notes in his appropriately brief introduction, ‘we can see the love … and as we know, love never dies’.
– Reviewed by Lewis Bush