Stigma is about social exclusion

In the conversations we have about HIV at national and global conferences, the word ‘stigma’ is all too often used to mean ‘HIV-positive people having negative experiences’.  When I first began working on stigma as an issue, back in 2008, my goal was to expand our sense of what stigma means.  I wanted the sector to adopt a language for talking about stigma that acknowledges that it has different components and works on multiple levels.

In particular, I wanted the sector to focus on how stigma is implicated in social exclusion — people not being welcome in particular social networks or settings — and social participation — people not being able to play a meaningful role within communities, workplaces, sexual cultures, social movements, arts and culture, policy-making, governance and democracy.

Along the way I’ve noticed parallels between the work I was doing around HIV stigma and anti-racist social movements.  For instance, stigma can be a productive framework for understanding sexual racism as a stereotype driven process for excluding non-white men as potential sexual partners.*

I am absolutely blown away by this article by Hanif Abdurraqib in Pitchfork magazine, looking at the failure to think about racism, and the way violence may be differently experienced by black people, as drivers of his experience of exclusion and alienation from the Midwest punk community.

Not least because the writing is so damn powerful:

I don’t remember the first time I noticed the small group in the back corner of a punk show at the Newport (one of the many venues that I fell in and out of love with in my hometown of Columbus, Ohio), all of them, in some way, pushed out of the frenzied circle of bodies below, and the alleged loving violence that comes with it. I do remember the first time I became one of the members of that group in the back corner of shows. At 18, I hung in the back corner of the Newport and watched NOFX with the rest of the kids who didn’t quite fit, or at least became tired of attempting to fit. I looked around and saw every version of other, as I knew it. The black kids, the girls my age and younger, the kids most fighting with the complexities of identity. We sat back and watched while NOFX tore through an exceptionally loud version of “Don’t Call Me White”, and watched below, as a monochromatic sea crashed against itself.

In a piece evocatively titled ‘The Rice Steamer’, Australian researcher Gilbert Caluya has described something similar on the gay scene:

During one of my trips to a particular club I must have looked confused or perhaps just out of place because a white man came up to me to offer some help. ‘If you’re looking for where the Asians are you can find them over there’, he said pointing to a group of Asian men. Over the course of the fieldwork it became evident that this nightclub seemed to ‘reserve’ this particular space for Asian men and rice queens who huddled around the bottom of the stairs next the stage.

Caluya uses the concept of ‘striated space’ from Deleuze and Guattari (1988) to analyse how gay community venues are partitioned into zones where people of non-white race can experience more or less microaggressive friction — such as the ‘helpful’ direction he recounts in the quote above.

These two quotes can help us think about how stigma is involved in experiences of social exclusion that accumulate and calcify into social structures that are, in turn, implicated in the inequitable distribution of access to life chances — such as opportunities for love, sex, and social connection; and more concretely, health services like counselling and technologies for health like PrEP and HIV testing and treatment.

endnotes

* I wouldn’t go as far as Link, Phelan and Dovidio (2008) in speculating on stigma and racial prejudice being the same things.

Wrap post for @WeMelbourne

I’m writing this with a powerful sense of tweetus interruptus, as I’ve hit the daily tweet limit for the @WeMelbourne account HALFWAY THROUGH A CHAT ABOUT HIV-POSITIVE AND NEGATIVE OBLIGATIONS AROUND STATUS DISCLOSURE.

Lot of people now tweeting at me ‘condoms aren’t 100% effective you know, it would be irresponsible not to disclose’ or variations on that, implying that a positive person who keeps their status private is being dishonest.  And I can’t reply and boy it’s killing me…

READ THIS, please:  HIV scandal on Jack’d: Boy, that escalated quickly!

This is why I don’t believe positive people have an obligation to disclose to random strangers if they’re only talking about having safe casual sex.  There is just no way to predict how someone is going to react, and some people react in vindictive, over-the-top ways that can result in a total loss of control about who knows your status.

Positive people themselves talk about feeling an obligation to tell their partner in an intimate, ongoing relationship, but there are different schools of thought on when to do it.  Some will do it on the first date, so that rejection hurts less if it happens, but that’s going to make first dates even more nerve-wracking than usual.  Others will wait until trust has developed and then disclose, but some negative partners react very badly to this, feeling they have been ‘deceived’.

Australia’s National HIV Strategy makes it clear that both HIV negative and positive people have a responsibility for prevention.  That means we can’t just talk about what the HIV positive person’s obligations are.  We need to do more for negative people to help them overcome fear of HIV and learn how to manage HIV disclosure when it happens.

Hep C stigma as a pharmaceutical marketing device

A new campaign funded by Janssen-Cilag P/L under the Hepatitis Australia brand uses Hep C stigma to drive users to its product.

Update 31/7/13: Hepatitis Australia has announced they’ve removed the video. Well done all who expressed their concerns to Hep Aust and Janssen-Cilag P/L.

Update 1/8/13: And they’ve uploaded a new version!  See the video below.  Thanks to Lyn Carruthers for pointing this out.  What do you make of it?  Feel free to post your thoughts in the comments.

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Mark McCormack interviewed by Dean Beck & Lauren Rosewarne

I finished high school in 1999. Homophobia was rife, and being gay I took it all personally.  In first year uni I came out as gay, and went back to my old school to coach Year 9 debaters.  Now, 14-15yo teenage boys are pretty awful.  But they quickly figured out my sexuality — the Onion headline ‘Newly Out Gay Man Overdoes It’ could have been written about me — and the gay jokes ceased.  Every now and again they’d slip up, blush and say ‘Sorry’.  Gay was no longer some abstract anti-ideal; it had been personalised.

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A core theme for stigma work

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:

  • Harm/Care
  • Fairness/Reciprocity
  • Ingroup/Loyalty
  • Authority/Respect
  • 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:

  1. Purity norms trigger Ingroup norms: stereotyping PLHIV as unclean leads to othering (us-and-them thinking);
  2. Harm prevention is offered as a socially-acceptable ‘cover story’;
  3. 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.

Strategies to tackle stigma

Recently, I’ve been thinking about how you might tackle HIV stigma across a whole range of different groups, such as gay/bisexual men and heterosexuals, men and women, from White and diverse cultures, sex workers and injecting drug users and white picket fencers.

There have been some generic approaches, often making very broad appeals (“motherhood statements”) for dignity/respect.  I’m not fond of this approach, because it’s easy to agree without thinking to a general sentiment, and changing attitudes takes mental effort.

In other words, if you want social change, you need to get people thinking.  But you need to provoke a particular kind of thoughtful, attentive, seeing-both-sides mental state.

If you get people riled up emotionally, at some point they will shut down, dig in, get tunnel vision, and defend their positions. Tabloid and talkback journalism counts on that reaction. In fact, exposing misinformed people to factual corrections can sometimes make the initial beliefs even stronger.

The literature on stigma reduction is really clear that it’s not about ‘correcting myths’ with accurate information.  You really need people who practice stigma to rethink the social and emotional purposes that underpin their belief in the stereotypes.

Discussion groups are brilliant for this purpose, but you can’t put the entire population through six-week groups, 12 people at a time!

There have been social marketing campaigns against stigma, but I am skeptical about whether this approach can work;  reducing complex issues down to single-minded propositions tends to result in broad appeals (wishy-washy) or shock tactics (which backfire).

Where community-level interventions have worked, they have been multi-strategic and multi-level, using a social marketing campaign headlined by name-and-face personal narratives, backed up by community diffusion activities through opinion leaders and more localised opportunities for debate and discussion, and giving audience members some concrete action they can take to demonstrate their commitment.

All of that calls for time, effort, and resources, and if you take diffusion seriously, your intervention looks less like an ad campaign and more like a social change movement.  Does this sound familiar?  In Australia, think of thisisoz, and worldwide, Dan Savage’s It Gets Better project or the Obama campaign or the recent Egyptian revolution.

But don’t get carried away thinking the technology does the work.  What matters is whether your message makes people think.  You might create the greatest Facebook page in the world, but that’s not much use if people Like-and-forget it.

In Pt 2, I’ll talk about the message content, and a theme I think might work across all those different social groups I listed above.