PIF 11th June 2019
Professor Jeffrey Grierson introduced his discomfort over the years around “researching the margins” and how HIV research can maintain those margins as there is a need for that rhetoric of marginality in order to leverage funding for the community sector and researchers. However it raises some questions: Whose margins are they anyway? Who is looking at who and in what way?
So what do we mean when we talk about marginalised communities?
- Statistical minorities – For example 3% of the population in Australia are indigenous. But there are also groups who are minorities but not necessarily economically deprived e.g. women with young children, so statistical minority doesn’t create a marginality in itself.
- Differential quality of life – Comparative disadvantage by identifying which groups are doing worse in comparison to others. People who are poor have a different experience living next to people who are wealthy compared to living with people who are also poor.
- Power differential – The power that communities have to make decisions for example. In research this includes whether the topic has emerged from the community rather than imposed by the funder or researcher.
- Representation – Who is represented and how are they represented in media, imagery, discourse, language, etc. Marginalised communities are often represented as alternative from the mainstream.
- Ineffectively serviced – Marginalisation as service oriented, so when a group is underserved and don’t receive adequate support, rather than incorporating sense of their identity.
- Othered – The way in which groups are placed as the exception to the norm and how this plays out in society, for example celebrating black history month.
And how can we work from within the margins?
- Insider research – The researcher can identify with the marginalised community and build a sense of friendship, making engagement easier.
- Outsider research – The researcher by definition has a different perspective and asks people to respond to questions, which is not the way people live and experience something.
- Liminal positionality – The position of the researcher is multidimensional: there are bits that you are inside and bits that you are outside.
- Complex margins – There is a coalition of communities so the researcher is always an outsider and there is often a lot of internal politics.
- Your margins or mine – The sense of identification between the researcher and the marginalised community can be really complex as to how far their experience is shared.
With this in mind, Jeffrey shared his personal reflections around HIV positivity research in Australia. Though HIV is seen by the mainstream as a marginal experience, for someone living with HIV, it is their entire world. HIV research and advocacy emerged from community identified need, drawing on gay liberation and feminism, and in some ways an example of organic participation and activism.
This was a horrible time for many people, with a sense of hopelessness for people inside the margins of the gay community and a toxic atmosphere towards them from outside the margins; but in this sense, the community had nothing to lose and so took action to try and improve people’s lives.
Inside the margins: There was terror including enforced imprisonment, shame and guilt, a great sense of loss and anger, but also activism and a common purpose to fight for.
Outside the margins: There was hatred, fear, discrimination and stigma towards the gay community, but also cross-party collaboration in response to HIV, so some positive political aspects.
HIV research: Community based research that was focused on rapidly documenting what was happening. It involved people across all classes and cultures, as so many people were affected by HIV – for some they had nothing to lose while others were risking everything.
There was consolidation around the HIV response including the need for activism to galvanise money, services, political commitment and changes in law. Campaigns were bold and shocking for the time, but pushback against campaigns gave opportunities for further activism.
Inside the margins: The community built alliances around hope, grief, pride and resistance, and they became more professional in order to be strategic in establishing evidence.
Outside the margins: There was a move to international concordance, scepticism rather than optimism, medicalisation of HIV, and distrust of activist based evidence due to issues of objectivity.
HIV research: Consolidation of research that was well resourced and so had the space to be ambitious and creative as well as strategically developing research agendas that were grounded in the community. For example the HIV Futures Project included an Advisory Committee; though disparate positions of members needed to be managed, alongside avoiding further marginalisation of the community or fuelling the media.
With the collective structures in place, campaign work centred on representing different identities and intersecting experiences of people affected by HIV; however money began to diminish.
Inside the margins: Increasing differentiation – not just people with HIV but those at the margins of the margins, which meant a rush to the margins and competition undermining the alliance. There was a sense of failure of the gay liberation movement, with gay marriage seen as the goal of equal rights and nostalgia becoming problematic as “young people don’t know what it was like”.
Outside the margins: HIV and gay liberation slowly disappeared from public discourse and there was a backlash of normalisation, while science became weaponised.
HIV research: There was an emphasis on innovation over consolidation in new initiatives, with surveillance and strategy dominating funding. There were also challenges in representation of all the experiences from the margins of the margins, and the “everyone is a researcher” conundrum.
Specific campaigns with particular communities (e.g. indigenous communities) who are involved in the development of these campaign; but this is set in the context of hugely diminished resources.
Inside the margins: Increased individualisation of HIV experience, but normalisation of this and integration into mainstream services. There is also a loss of elders impacting on leadership for HIV community engagement and research.
Outside the margins: Perception that AIDS epidemic is “over” so specific funding is completely diminished and absorbed into mainstreaming of funding. There is a re-emergence of the individual blame discourse, and the margins are somewhat erased as experiences of HIV are very different now and not necessarily marginalised or stigmatised.
HIV research: Severely diminishing resources and a loss of critical mass. Various shifts from social research to intervention science, from national concern to international aid, and from HIV focus to integration into mainstream.
The discussion included a consideration of how to represent a diverse but distinct community in a positive way and without perpetuating the issues. The emergence of HIV positive researchers changed the way in which HIV research was viewed. Managing the media was also important and at times in the past this meant keeping the media away from HIV research. The participation of the Advisory Committee was also useful in guiding how to represent the community and the wider field of HIV research e.g. peer reviewing reports. They received training on research so that they were able to engage in the research in an informed way; but it was noted that this training may have influenced them in terms of becoming part of the research community, rather than the lay community. Overall, Jeffrey suggested that the term marginalisation is still useful for mobilising funding and that is what made the research work and led to people being able to see themselves represented in participatory research. It can give people a voice and a purpose which is important for engagement, but it is essential to keep being critical.