Why study stigma?

Just before the December break, I asked my Facebook Brains Trust (FBT) what questions they have about stigma. As always, the answers were exceptionally thoughtful — I’m lucky to be friends with intellectually and emotionally generous people. Here are some of their questions:

  • I want to know if HIV stigma can be eliminated, or even significantly reduced. I want to know this so that I can see clearly whether we should be trying to eliminate it or learning how to live better with it.
  • I want to know how we can effectively measure stigma in a meaningfully qualitative and quantitative way, so that we can assess the impact of both our work and the impact of other changes in the broader social environment.
  • The question of untangling HIV stigma from all the associated stigmas (drug use, sex, homosexuality, race, etc etc) – how intersectionality plays into it; what other stigmas inform HIV stigma & what can be done about that.
  • Is the educational investment required to de-stigmatise the opinions of one average person with no understanding of the stigmatised issue so great that it could never be scaled up to the population level and/or expanded across all stigmatised issues?
  • What is the cost benefit threshold at which someone who benefits from stigma begins to feel compelled to divest from it?
  • Why 30 years of effort addressing HIV stigma seems to have had so little impact.

Thanks to Paul Kidd, Jason Appleby, Jed Barnum, Aaron Cogle and Bernard Gardiner for these questions. I’ll be keeping them in mind.

So why study stigma? In part, it’s to answer questions like these. They concern human suffering and the scope of our potential to end it. That’s my starting point. But I’m also coming from a decade as a practitioner in a genuinely community-based response to a public health concern — the Australian response to HIV. That experience, and my work with Dr Graham Brown, has posed some thorny questions about how public health decision-makers think about the complex social systems this work is engaging with.

If this thinking is simplistic, the interventions that get funded may not take advantage of the full capabilities of the networks, cultures and communities they take place within. Or they might take an overly rosy view of ‘community’ and miss out on some of the harmful dynamics that can exist in a close-knit network of people.

Although stigma is a horrible thing, it has one helpful property: the minute you are thinking about stigma, you are immediately thinking about ‘sociality’ as well — the whole complex of ways of living in relationship with others. Thus, studying stigma is a ‘can-opener’ that lets me explore how public health thinks about ‘the social’.

Why do I want to do that?

Currently, we have a case study of effective community-based prevention in the Australian response to HIV — but it is very much an exception to the norm in the wider health system, and as the meaning of HIV changes, this places pressure on funding and policy support for the exception to continue.

In order for the HIV model to survive, we need to understand it, theorise it, and promote it as a model (with appropriate adaptations) for other public health issues. The foundational stories that we told to get it started are based in political movements from the 70s and 80s that are no longer salient to politicians and policy-makers, so we need to articulate it in the language that resonates with contemporary public health in the 21st century.

My comparison case is the policy response to obesity. In case this seems odd, remember that the social movement that underpinned Australia’s community-based response to HIV came out of a movement created to challenge anti-homosexual stigma. I think we are seeing the same thing happening with obesity, with the emergence of the Health At Every Size (HAES) movement.

Very often the target of fat activism is public health messaging about healthy eating and body size, and I’m aware of clinicians who are frustrated by the challenge fat activism poses to their authority over what they see as the medical problem of obesity. The same battles were fought in HIV activism.

These battles obscure the potential for the HAES movement, via its crystallisation in myriad blogs, twitter networks, on tumblr and in Facebook groups, to become the social substrate for community-based health promotion. The essential challenge here is the same: it is the need to support public health decision-makers in thinking about these social systems as having capabilities — and developing practices that engage them effectively.

My proposed study involves observing the development of interventions in HIV and obesity, in Australia and overseas, and paying attention to how the stakeholders at each site talk about the task of engaging with complex social systems (such as networks, cultures and communities). I will analyse the policy context and project documentation in order to tell the story of how a particular campaign message slowly crystallises out of a cloud of talk and text. By collecting and analysing this data, and comparing it across health issues, countries, and established/emerging responses, I aim to develop a theory of engagement for researchers in public health as well as practical guidelines for funders, policy-makers and practitioners.

In the longer term, however, I would like to end up researching public health from an academic department focused on culture and communications, rather than being the ‘culture guy’ in a public health department. In my first year of the PhD, I already had the bones of the project in place, and I did a lot of reading across the different disciplines to locate my project and a possible career path.

My provisional location — basecamp, if you like — is communications ethnography. I’m located for now in a centre focused on regulation and governance, which is a great fit for my perspective on public health. I’m drawing on linguistic and visual anthropology to ground my analysis of campaign documents and images. But all of that is subject to change: my task for this year is to take my pockets full of preconceptions and go and get mugged by reality.