In the middle of a health emergency, such as the current Ebola epidemic, or faced with more sustained health crises such as HIV and Aids, it is easy to forget that health crises have histories.
Although the pathogens responsible for some health crises may appear to be new, or evolve between bouts of infection, the responses of people and societies to large-scale disease (and dis-ease) very rarely change.
To paraphrase eminent health historian Professor Howard Phillips of the University of Cape Town’s department of historical studies, once you start reading the news reports you start seeing a familiar pattern, a familiar series of responses.
These responses always reveal the worst of humanity —stigma, fear, political wrangling, inequalities, sexism, racism, blame and disparity in healthcare access because of global social injustice.
They also reveal the best of humanity — efforts to provide more access to treatment, ceaseless caring, commitment to healing and collaboration between and across sociogeographic boundaries.
Sometimes the worst aspects of humanity seem to outweigh the best, and it is at these times that historical awareness and the potential opportunities in a new field such as medical humanities becomes important.
The eerie familiarity of responses to epidemics arises, in part, because we forget about history and what it tries to teach us. We forget that an individual, a community, a geographic area did not spring from the earth, fully formed and untainted.
Context
Spaces we inhabit have been shaped by environmental and human factors that influence how we are able to respond to health crises. The particular context of the exact time at which an epidemic arises shapes moral, legal, political, social and economic responses to it by individuals, communities and countries. The particular context of an exact time, however, is created from the particular context of many times — the near and distant past, the present and the hoped-for future.
When the syndrome that would eventually be called Aids was first being discussed in newspapers and medical journals in South Africa at the beginning of the 1980s, much of the public hysteria and constrained medical research focused on people defined as “white”, “male” and “homosexual”.
The narrative of Aids at the time drew on a handy set of Aids avatars including “gay men”, “sex workers”, “black heterosexuals”, and “infected outsiders” that was built on understandings about Aids, which came from the United States and the United Kingdom but was shaped and refined by the particular political context of 1980s apartheid South Africa.
Sometimes these avatars were deliberately evoked for political expedience or as a way to expound particular brands of morality or judgment. Far less frequently, they were challenged and used as a way to open up discussions about respect and equality.
They were also followed because of research methodologies that were not historicised, or a lack of critical engagement with problematic disciplinary practices, or a lack of self-reflexivity among those with the power to produce knowledge that shaped official responses to people’s lives and deaths.
Narratives changed
As with any hegemonic narrative, there were challenges and articulations of outrage or efforts at altering the nature of the narrative, and over time the Aids avatars and the narratives around Aids changed. There were moments of medical scientists, activists and humanities academics coming together (or being forced together) to address what had been said and written, about whom, when, where and with what intention.
In South Africa in 2014, with numerous health crises to address and multiple modes of healthcare provision being sought, do we have sufficient knowledge of the complicated interactions around health crises that have shaped our current context to critically evaluate the situation and make informed decisions about a way forward? Are we sensitive enough to the histories that have shaped our “dis-ease” to recognise the repeated patterns and alter them — individually, in our communities, in our geographic spaces?
I would argue no — not if we maintain historical amnesia and do not seek new spaces for meaningful conversation. Medical and health humanities, reconceived and reconfigured for the South African context, may be able to provide those spaces.
The Body Knowledge conference held at the University of the Witwatersrand last year started shaping this new space, and the recent Medical Humanities in Africa conference organised by the University of Cape Town continued by providing forums and provocations for these conversations.
As a speaker at the latter conference noted, we need to develop “epistemic modesty” to further these discussions. I would argue that we also need to encourage epistemic empathy and invoke the imagination of the intellect.
The opportunities for collaboration between a brain surgeon and a historian allow for all sorts of expectations and imaginative innovations. Imagine a conversation in which the historian tracked the problematic developments in brain surgery and highlighted exclusionary and inclusionary factors that have allowed brain surgeons to become brain surgeons, whereas the brain surgeon explained in greater detail the process of the surgery or the challenges of working on someone’s brain.
First-hand experience
Now imagine that conversation expanding to include the experiences of the person who underwent the brain surgery, or the experiences of those who could not undergo it because of socioeconomic exclusion.
Imagine the potential for new understandings about health crises if there was a space to which people could turn for robust research and reminders of the histories that have shaped how we experience health and disease.
Medical humanities could provide interesting opportunities for researchers, academics, health practitioners, communities, activists and other individuals to apply their disciplinary rigour, professional experiences and personal and political consciousnesses to nuanced understandings of health.
These understandings, combined with historical consciousness, may better prepare us to evaluate and engage with current and future epidemics in such a way that we hear the echoes of the past, but generate new sounds that allow for (r)evolutionary new echoes.
Dr Carla Tsampiras is a historian whose recent doctorate examined the early responses to HIV and Aids in South Africa, 1980 to 1995. She is a National Research Foundation postdoctoral research fellow in the department of historical studies at the University of Cape Town, and will soon take up a senior lectureship in medical humanities in the university’s Primary Health Care Directorate