Class, queerness and illness in the ‘post-crisis’ era: rewriting the narrative of HIV
- Written by The Conversation
I often read a book’s acknowledgments to see who an author thanks for supporting the creation of their work and how they go about thanking them.
Among those mentioned at the end of Jonathan Bazzi’s autofiction is the award-winning Italian novelist Viola Di Grado. Bazzi thanks Di Grado for “curbing my wild proliferations of thought”, though frankly it’s hard to fathom a version of this memoir that’s even more wild and proliferating.
Review: Fever by Jonathan Bazzi (Scribe Publications)
In Fever, the 37-year-old Milanese author meditates on illness and wellness, sex and death, families and their undoing, class and Italianness, mothers and sons, desire, art, education and more. When they land in a psychiatrist’s office, Bazzi is “a river that’s overflowing. I can’t stop.” Their account of growing up poor and queer in Northern Italy and of coming to terms with HIV in the era of undetectable viral counts is a veritable explosion of ideas.
The story of an illness
Susan Sontag photographed in her home, 1979 ©Lynn Gilbert.
Wikimedia Commons, CC BY
Reflecting on their diagnosis, Bazzi parses the social meanings of HIV: “HIV confirms two things: you’re gay, and you’ve had sex. Maybe too much sex, and in a promiscuous manner.” Another story: HIV is part of a family curse. “Bazzi men are unlucky; they always die young”.
Recalling Susan Sontag’s two famous essays on disease, Illness as Metaphor (1978) and AIDS and its Metaphors (1988), Bazzi contrasts the metaphors used to understand cancer, which his father has, and HIV.
Cancer is a crazed proliferation of cells. HIV is cell death. Cancer is internal revolt, the body wanting too much, growing, expanding. HIV is an attack, an invasion, a capitulation.
The various stories Bazzi tests out reflect the abundance of social meanings produced in response to disease.
Much like COVID-19, HIV has never been a simple collection of virological or biomedical facts. HIV/AIDS was the first global pandemic of the media age and since it first came to public attention in 1981, it has been extremely fertile territory for a wild proliferation of stories.
AIDS as a Communist plot to bring down the United States; AIDS as a virus developed in CIA laboratories to kill homosexuals. While compulsively researching online, Bazzi discovers that many of these outlandish ideas continue to circulate:
HIV is a hoax […] The biggest conspiracy of the twentieth century […] HIV and AIDS were invented by Big Pharma.
The stories we tell about disease, including the supposedly neutral language used by doctors, scientists and public health professionals, give structure and meaning to our understanding of it.
In the case of HIV, the proliferation of stories has been of particular interest to researchers, activists, people living with HIV and many others. Because the way these stories are told – particularly in the public sphere – can influence the way epidemics play out, including who does and doesn’t receive appropriate care.
One of a series of safe sex posters from an Italian ‘Stop AIDS’ campaign by the AIUTO AIDS Svizzero in collaboration with the Federal Office of Public Health.
Wikimedia Commons, CC BY
Performing illness, from the dramatic to mundane
“HIV has its own history, its own traditions”, Bazzi writes.
Destinies, statistics, organisations, clinical cases, media stories. A long sequence of narratives that predate me, that I know very little about.
Despite these claims to ignorance, Fever is particularly illuminating on the social experience of illness – the way a set of rituals and performances play out around the sick body, and how these operate to confer a set of social roles.
At the centre of the plot is the sick body, which provides evidence, clues that propel the narrative of illness along and so must be monitored and traced, described and surveilled. “I am preparing my bodily fluids for examination. My body is invested with new meaning.”
Doctors are the other core protagonists in this drama, and they possess a crucial storytelling role. They are “priest-like”, with the power to assign the sick person “to a community”, allocating them “a narrative, a case study”. And of course, the key setting for such performance is the hospital, “the place where either you’re reborn or you die”.
Despite its urgent pace, Fever is a reminder that the story of sickness isn’t all dramatic climaxes. Chronic illness also involves very mundane and administrative tasks. Appointments, referrals, tests, prescriptions; the keeping and processing of medical records, payments, insurance paperwork. This is the everyday work of being unwell. Bazzi captures it in snatches of conversation overheard in waiting rooms.
“Do you have a health insurance card? Excuse me, have you provided a urine sample?”
“That’ll be 27 euros and 80 cents.”
Importantly, the dramaturgy of illness creates and re-creates interpersonal roles and relationships. For example, Jonathan’s partner Marius tests negative and this powerfully changes their relationship.
The couple are now sero-discordant (where one person is HIV-positive, the other HIV-negative): “An asymmetry is established.” Marius’s blood “has been interrogated, and it tells a different story”.
And what if, in spite of existing narratives and social roles, your own illness disregards the established parameters? For Jonathan, HIV is a “catalyst” and their body an “ampitheatre”, but there will be more to the story of their fever before it’s resolved – if indeed it ever can be.
Read more:
HIV/AIDS on screen: by focusing on history, we ignore the present
The HIV and AIDS memoir
Fever is being hailed as one of the “first contemporary personal narratives of living with HIV”. In spite of the upwards of 37 million people in the world living with the infection, this is a fair description.
During the 1980s and 90s, a large body of HIV/AIDS diaries and memoirs were published. The most famous were written by white gay men living through extreme physical suffering and often social isolation in the early years of the AIDS crisis.
Among them are works by David Wojnarowicz and Paul Monette in the United States, and Derek Jarman in the United Kingdom. In Australia, there was the extraordinary AIDS diary Unbecoming (1990) by Griffith University anthropology lecturer Eric Michaels. Far better known is Timothy Conigrave’s Holding the Man (1995), which was adapted for the stage and eventually the screen.
Ryan Corr and Craig Stott in Holding the Man (2015).
IMDB
HIV/AIDS was – and remains – a carrier of heavily political meanings and these works served a testimonial function. They offered the experience of an individual but also paid witness to experiences of political abandonment and the failure of state institutions to properly respond to HIV/AIDS. Such testimonies enabled the expression of grief and mourning, but also provided a foundation for activism and political action.
These works also developed new experiential and expressive languages for thinking about illness. In so doing, they helped to transform public understandings of HIV. Alongside incendiary activist campaigns and other forms of cultural production, they played an important role in changing phobic and discriminatory narratives about HIV.
Fever is an inheritor of this tradition, but it’s a story about HIV in the “post-crisis” era.
Today, HIV positive people on treatment have a negligible viral load and largely cannot transmit the virus. Treatments are so significantly advanced that they have fewer and fewer side effects; new developments promise drugs that only need to be taken once a month or every two months. And yet, older ideas about HIV cast a lingering shadow. As Bazzi writes, “people living with the condition are still subject to a toxic blend of invisibility and guilt”.
A lack of conversations and stories addressing the contemporary experience of living with HIV may contribute to and exacerbate this stigma.
Bazzi is explicit in their refusal of this state of affairs, “rejecting the tradition of shame and discretion”.
Fever is indeed a landmark in this sense, because while the stories of the crisis era were prolific across genres and forms, very little media and literature has captured the experience of living with HIV now.
“My HIV diagnosis is an incontrovertible fact”, Bazzi concludes.
I have HIV – all that means is I have to see my doctor a lot, and do lots of tests. Like millions of other people in the world, for all kinds of reasons. Everything else is extrinsic. Put there by you, by us.
