Thank You Susan Sontag

Notes on Photography and AIDS (But Not Camp)

Our son, Ariel, loves Rap.

Last month Rachel and I took him to Fotografiska, a photography museum in the Flatiron District, to see a show titled, Hip Hop: Conscious, Unconscious. Spanning 50 years of history, the show was an amazing compendium of portraiture – both artistic and photojournalistic – covering the trajectory of Hip Hop culture from its origins in the Bronx to the present day.

One photograph, in particular, struck me – a shot of Wyclef Jean and Lauryn Hill on a rooftop. The sky is gray. Housing projects loom in the background. Wyclef is playing his guitar, with Lauryn squatting on the asphalt. They are both wearing sheepskin coats, Wyclef in a brimmed cap, and Lauryn with beige Timberlands and gold, hoop earrings.

Hung among other photographs of rappers in their youth – Eminem at his first show in New York; Jay-Z lounging in a deck chair in the back lot of a housing project – it felt like a find, a peek at Wyclef Jean and Lauryn Hill before they were The Fugees when they were still regular people – talented but unknown.

Like a baby picture you scrutinize for hints of what would become, I saw the photograph as poignant and meaningful, full of innocence and glimmers of as-yet unrealized potential.

Except that it wasn’t.

I later learned that the photograph was taken in 1993, after their first record deal, as part of a publicity shoot while making a video. Like an Airbnb posting, what the photographer left out was as significant as what she put in: apparently, behind her were over fifty production staff, hairdressers, makeup artists, musicians, and other members of the cast and crew.

I hadn’t realized how much I projected onto the photograph, how active I was in the seemingly passive experience of viewing an image, and how that could lead me so far off base.

At the time the photograph was taken, back in 1993, I was finishing my second year of medical school. The first year and a half were all classroom learning – textbooks, lectures, and labs. Halfway through the second year, we started our clinical rotations – taking care of real patients as the lowly medical student on a team of doctors in the hospital.

It was an exciting moment that we had all been eagerly looking forward to, but also a scary one.

The beginning of our clinical rotations coincided with the height of the AIDS epidemic. As the death rate soared, the true impact of HIV finally came into focus for most Americans. The Tom Hanks movie, Philadelphia, was released. Tony Kushner’s play, Angels in America won the Tony Award for Best Play and the 1993 Pulitzer Prize for Drama.

And yet, the disease became increasingly stigmatized.

In 1993, President Clinton signed the HIV immigration exclusion policy into law. A year later, AIDS would become the leading cause of death for all Americans ages 25 to 44, with no cure, or even real treatment, in sight. The diagnosis was viewed as a death sentence – it would be two more years before the first protease inhibitor, AZT, was approved by the FDA.

One day, on my internal medicine rotation, I was told by my resident to go draw blood from a patient on our service. She was a 39-year-old woman with a history of intravenous drug use and HIV. Actually, not HIV but end-stage AIDS, with cerebral Toxoplasmosis – an opportunistic brain infection that was a common complication in those days.

I still remember how she looked – cachectic and confused, with sunken temples and thinning hair. She couldn’t have weighed more than 90 pounds. I was very green at the time – still learning the steps and proper technique of drawing blood – and no one was around to help me.

Maybe my hands shook, or maybe she jerked, I don’t remember exactly, but the needle pricked my finger through my glove, deep enough to draw a drop of blood.

I went to the bathroom and irrigated the wound. I didn’t tell my supervisors – or anyone else, for that matter – what had happened to me. Anyway, there was nothing to do about it – this was way before the post-exposure prophylaxis protocols that we have today. Later that evening I got an HIV test to establish a negative baseline. Then began a three-month wait to see if I would convert to positive.

It’s hard to describe my state of mind during that time except to say that it was not good.

All sorts of crazy ideas swirled through my head, keeping me up at night. It was only after I tested negative for the second time, and felt like I was able to breathe again, that I fully realized the immense weight I had been carrying around.

When I was in college, Susan Sontag, the writer, novelist, cultural critic, political activist, and philosopher, was very much in vogue.

In addition to being a great read – provocative and bold – Sontag was also a glamorous personality, with a shock of white running through her long black hair, and a romantic relationship with the famous fashion photographer Annie Liebowitz.

Sontag was a wide-ranging thinker, one of those writers who liked to apply her insights broadly. She is the only writer I know who has written books on both photography and illness.

In On Photography, published in 1977, Sontag examined the history of photography and the role it plays in our culture. She argued that photography fosters a voyeuristic approach to the world, diminishing the significance of events and discouraging more meaningful actions and interventions.

Contrary to what most photographers like to think, witnessing alone is not a moral act. And while you might think that photography would at least have the secondary effect of inspiring action by raising awareness, according to Sontag the opposite is true: it pacifies the viewer by enabling them to play the role of righteous witness instead.

You don’t do anyone any good, Sontag maintained, by simply witnessing their pain.

In Illness as Metaphor, published in 1978, followed by AIDS and Its Metaphors, published in 1989, Sontag analyzed the way our attitudes influence our actions from a different angle. She dissected the language used to describe diseases like cancer, tuberculosis, and later, AIDS. She showed how the metaphors we use when we talk about patients and diseases can both reflect and amplify victim-blaming, shame, and bias.

By the time Sontag died, in 2004, her star had fallen. There were accusations of plagiarism; her Left-wing politics and activism fell out of fashion; and her supposedly autocratic personality tarnished her reputation.

But I will always be grateful for her work.

How much of the way I felt during those dark three months was due to the stigma of AIDS as opposed to my true medical risk? More to the point, in what ways did that stigma seep into my treatment of patients, whether consciously or unconsciously?

Or take Covid. Was it the “great equalizer” as Madonna called it, from her milky bath sprinkled with rose petals, on social media? Or did such language only serve to obfuscate disparities between who lived and who died?

Did mask-averse anti-vaxxers really “deserve” to get Covid, as I so often heard? Or was that just another example – from the other side of the political spectrum – of the kind of victim-blaming that Sontag identified with AIDS?

Reading Susan Sontag gave me the tools to ask those kinds of questions.

Doctors like to think of medicine as an objective science. Like a photograph, clinical jargon purports to depict reality without interpretation or bias – just the facts. But as with photographs, so with patients – it’s a two-way street: what we bring to them turns out to matter just as much as what they present to us.

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Full Stack Family Medicine

Dr. Bertie Bregman
Dr. Bertie Bregman
Full Stack Family Medicine is a newsletter about what it’s really like to practice medicine and run a medical practice in New York City.
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