This is a two-part post. Click to read the first part, Strategies to tackle stigma.
Part 1 sets up the challenges for anti-stigma project work:
- for attitudes to change you have to make people think
- getting from a message to a movement
- finding a theme that’s relevant to very diverse groups
This post is about finding that cross-cutting theme. I have one in mind, but since this is a blog about prevention strategy, I don’t want to present it like some grand auteurish insight; I want to show how it fits together with findings from the various disciplines a good educational practitioner works across.
There’s an anti-stigma campaign targeting gay men in the federal pipeline, and it’s based on unusually thorough market research into the experience and practice of HIV stigma among gay men – pos and neg, young and old, in different cities around Australia.
But the prospects of research and campaign work addressing HIV stigma in all the other communities and groups affected by it are pretty slim, unless the issue is taken up at a state level. That’s not unreasonable, either — the smaller groups are so diverse it’s essential to craft interventions with local knowledge, rather than picking up strategies defined elsewhere.
Research with migrant communities in Victoria has shown HIV stigma is both prevalent and highly influential. It often takes the form of ‘extra knowledge’, layered on top of otherwise accurate knowledge of HIV transmission routes, associating HIV infection with immoral behaviour (Lemoh, 2006).
In African, Middle Eastern and South-East Asian communities, people have used stigma to avoid feeling personally vulnerable to infection (McNally & Dutertre, 2006). In other words, they ‘other’ infection risk, and perceive low personal relevance in HIV prevention materials.
At the same time, on becoming aware that someone in their community is HIV-positive, they may ‘play up’ fears of contamination through casual contact such as sharing food, hugging and kissing. In focus groups I have conducted, participants — riled up by learning that immigration health screening doesn’t exclude all HIV-positive applicants — called for public identification and/or quarantine of PLHIV for their protection.
So stigma is practiced in both gay white men and culturally diverse heterosexuals. Shouldn’t be too much of a problem to frame a message that discourages stigma in both groups, right?
When writers, advocates and activists talk about ‘stigma’, they often don’t give a definition of it, assuming instead there’s a single phenomenon called stigma and we all understand what they are referring to.
This is a big problem, because it turns ‘stigma’ into a buzzword — a concept loaded with political force but lacking in analytical power. When you use it that way, you express an evaluation or judgment, but it doesn’t convey anything specific or detailed about the situation.
And the specific detail matters enormously because stigma comes in many different shapes and forms.
Let me give an example. A research study in Tanzania used interviews to investigate the experience and practice of HIV stigma around the time that ART was being rolled out.
As PLHIV got access to lifesaving medication, the story of stigma changed, from shame (e.g. ‘slowly dying PLHIV are a burden on their families’) to blame (e.g. ‘PLHIV are a threat to our safety and should be quarantined’).
This shows that stigma is not a homogeneous practice, and knowing the specific details of how stigma works in a particular community or setting is essential for effectively reducing it.
A generic appeal (e.g. ‘be nice to PLHIV’) might have been effective in reducing shame stigma, but it would fail against blame stigma, and apart from simply restating the problem, the common formulation ‘HIV doesn’t discriminate, people do’ might have increased the fear of infection that underpinned the blame story of stigma.
This narrative shift, from a dying/victim/shame story to a surviving/threat/blame story, in my view explains the resurgent interest in punitive strategies for regulating HIV-positive sexuality that we’ve seen around the world since 2000. These strategies have included criminal prosecution and the moral panic against barebacking and its mythical variants in gay community and the mainstream media.
So I have another challenge:
- define stigma (and identify the local ‘stories of stigma’)
Here’s my definition:
Stigma involves (1) selection and labelling of a difference, (2) stereotyping people who are different in that way, (3) us-and-them thinking, (4) status loss and discrimination, enabled by (5) power relations (Link & Phelan, 2001). Stigma reproduces the social structure that marginalises minority groups (Parker & Aggleton, 2004).
Link & Phelan (2001) set out to provide an exclusive definition, so if some social practice doesn’t embody all five components, it’s probably not stigma.
- Poz men serosorting so they can bareback safely? Not stigma, because it’s based on prevention objectives rather than nasty stereotypes of neg men.
- A neg man rejecting a poz guy because he’s afraid of HIV infection? Not necessarily stigma, either, if he takes responsibility for his fears and he’s not basing his decision on stereotypes of poz men.
- Prosecuting someone who deliberately sets out to pass on HIV? Not an expression of stigma if it intends to give redress to someone who was deliberately or deceptively injured, but it will almost certainly contribute to the stereotyping component of stigma.
This definition is not perfect — there will be times when we want a more inclusive and broad-ranging definition, such as the one offered by Parker & Aggleton (2004) that I normally include as a supplement.
And Link & Phelan are trained as social psychologists, a discipline that tends to assume its concepts are universally valid across cultures. (Dun dun DUN!)
It also assumes that ‘what can’t be measured doesn’t exist’. As a statement of materialism, that’s unobjectionable, but in the social sciences it sometimes turns into ‘what we don’t yet know how to measure doesn’t exist’. And when people assume their concepts are universally valid, it becomes ‘differences we haven’t even bothered to look for don’t exist’. And that’s kind of the case with social psychological research into HIV stigma; it generally hasn’t considered whether and how it might be cross-culturally variable.
Research into moral reasoning has shown empirically that it is cross-culturally variable (Haidt, Koller & Dias, 1993). Across cultures, however, it tends to combine — in different proportions — the same five foundational intuitions:
- Purity/Sanctity (Haidt & Joseph, 2004).
The nice thing about this research is that it’s not a philosophical argument about how people should reason morally; it describes how they do. I’ve never seen it applied to stigma before; morality is one of those topics that social psychologists have dismissed as unmeasurable, and some bleeding hearts have argued that judgment in general is problematic and stigmatising.
Recasting Link & Phelan’s stigma definition in terms of Haidt’s moral theory, it seems that:
- Purity norms trigger Ingroup norms: stereotyping PLHIV as unclean leads to othering (us-and-them thinking);
- Harm prevention is offered as a socially-acceptable ‘cover story’;
- Disease is Fair consequence for not following Authority (social norms).
For me as a practitioner, this reframing gets me a lot closer to understanding what’s actually happening when CALD communities practice disease stigma:
If someone was a carrier of such disease it would mean: be careful when you come near me as I am an outlaw. Therefore no one would want to be in such situation and deprived of all protection and rights. (Vietnamese married man, quoted in McNally & Dutertre, 2006, p158).
In this way of practicing stigma, the stakes are a lot higher. It goes right to your moral status as a person, and it’s permanent.
The Vietnamese IDU interviewed in that study didn’t seem to care about their health, and that sounded to me like they felt their own moral worth was forfeit now they could no longer hide their use of illicit drugs.
By contrast, in the West, it is often assumed and argued that coming out is both the central strategy and key objective of our community politics and stigma reduction work.
That just isn’t going to fly for a single, African man living with HIV and TB, who’s afraid to leave his council housing flat to see a doctor or go to the supermarket in case somebody figures out he’s ill. He thinks his life is over, and he’s afraid (to the point of paranoia) of social contact, which is what we need to make us feel human. Stigma for him means solitary confinement.
We can do two things here. One is trying to reduce the practice of stigma. The other is supporting the people who experience stigma to deal with it.
For both things, I think the place to start is step (1) above — challenging the invocation of Purity norms against people living with blood-borne viruses.
‘Unclean’ is a cross-culturally relevant metaphor for stigma. Off the top of my head, here’s a not very systematic list of examples:
- PLHIV talk about how a positive diagnosis made them feel dirty
- Gay men ask ‘are you clean?’
- Erving Goffman talked about stigma as ‘spoiled’ identity
- IDU and BBV educators alike talk about ‘clean’ needles
- Hand-washing supposedly gives you a ‘clean(er) conscience‘ and it seems to have worked for Pontius Pilate
- Someone who is corrupt is called ‘dirty’, while someone with no criminal record is called a ‘cleanskin’
- In Islam and Judaism, food prohibitions is based on symbolic cleanliness, and cleaning is an essential ritual in most religions
- In the Indian caste system, contact with the untouchable casts contaminates the holier castes and must be cleansed
- Even in gay culture, sex onsite venues are frequently set up as bath-houses, enabling immediate cleanup after sex.
So that’s my thinking. If you want a core theme for multi-issue/multi-group stigma work, critiquing the categorisation of people as clean/unclean — however you tackle it — is the place to start.