The UK theme of this World AIDS Day is ‘HIV: Reality’, building on last year’s theme of ‘Respect and Protect’. The reality is that HIV status continues to mark people down as second-class citizens worldwide. Gus Cairns looks at a community-led initiative that documents HIV-positive people’s experience of stigma and helps them combat it.
HIV is a stigmatised condition, it’s agreed. To reveal one’s HIV status risks disapproval, rejection or worse. People may also stigmatise themselves, blaming themselves for having the virus.
How to reduce stigma is less clear. While we can legislate against discrimination, tackling attitudes is much harder.
Anti-stigma initiatives are useless unless we understand exactly what we are trying to combat and how we can.
Stigma describes something we attach to people perceived as having offended against the way we think people ought to be.
The US sociologist Erving Goffman, in his seminal book,1 described it as an intensification of the normal expectations we have of people.
“We lean on these anticipations we have,” he said, “transforming them into […] righteously presented demands.”
Who’s this ‘we’? Well, it’s unlikely anyone is free of stigmatising attitudes towards others. What do you think of bonus-grabbing bankers? Of AIDS denialists? Even members of a stigmatised group can stigmatise others, and quite often we do to those nearest us. In June, HTU looked at how having HIV is stigmatised by gay men (see Stigma Begins at Home, issue 187).
Yusef Azad is Director of Policy and Campaigns for the National AIDS Trust (NAT), which has campaigned against both stigma and discrimination in the past. Azad now makes a careful distinction between three concepts.
“Discrimination is the simplest of the three to tackle,” he says. “It is a legal concept, a concrete and identifiable way of doing harm to someone by treating them differently. It may be the result of prejudice or stigma but you don’t have to look at motivations or reasons to prove discrimination.”
“Prejudice consists of unfair, stereotypical and usually negative assumptions about someone else based on the group they are seen to belong to.”
Prejudices may still not be stigma. “Stigma is different because it has a concept of shame attached to it,” says Azad.
“In stigma, a belief system is actually shared by the stigmatiser and the stigmatised. The stigmatiser fears becoming the type of person they hate, and the stigmatised person feels [that] shame... Stigma has a grip on people: that’s what’s so toxic and unfair about it.”
“Stigma is absolutely dependent on the stigmatised person actually giving a damn, in terms of feeling ashamed,” says Azad. “Organisations like NAT can combat discrimination, and we can even help to make public expression of stigma unacceptable. But the only thing that stops stigma is for people with HIV to refuse to feel the stigma. Why should they have to do this? Because only they can.”
When the nurse put on two gloves I was so humiliated, I mean who taught her to do that?
A response from the 2009 Stigma Index
Conscious of this, a group of HIV-positive activists have developed an ambitious project to measure, describe, codify and combat stigma against people with HIV: the People Living with HIV Stigma Index, a joint project of the International Planned Parenthood Foundation (IPPF), the Global Network of People Living with HIV and AIDS (GNP+), the International Community of Women Living with HIV (ICW), and UNAIDS.
The Stigma Index is both a stigma-measuring and a community development tool. It recruits HIV-positive people to be community researchers, conducting interviews with other HIV-positive people and asking about every aspect of the experience of stigma.
The Index asks about experiences only over the last year, so that people’s memories are fresh and so that later years’ results can be compared. Areas covered include:
- Basic demographics, access to healthcare and medication; reason for HIV testing
- Disclosure to others and their reactions
- Experience of exclusion from family gatherings, religious activities, social groups and so on, or sexual rejection by partners
- Whether people had been gossiped about, harassed, threatened or insulted
- Discrimination: in employment, education, housing and health services
- Self-stigma: feelings of shame, guilt, self-blame, being suicidal etc.
- Self-exclusion: voluntarily opting out or avoiding jobs, social groups, relationships and so on
- Whether people knew that people with HIV were protected by laws such as, in the UK, the Disability Discrimination Act
- Whether the respondent had ever helped another person with HIV, joined a voluntary organisation, or been an HIV campaigner themselves.
Individual countries are allowed to ask supplementary questions; for instance, in the UK, there was a supplementary section on criminalisation of HIV transmission.
The Stigma Index relies entirely on people coming forward. Participants are guided by trained facilitators and fill in the 24-page questionnaire individually. Open-ended discussions and phone follow-up interviews are then used to gather more qualitative data. In the UK 867 people, recruited through community groups, were interviewed.
“More than we were expecting,” says the IPPF’s Lucy Stackpool-Moore, who has co-ordinated the Index here.
Small pilot studies tested the types of questions in 2006 and last year the Dominican Republic became the first country to conduct a full Stigma Index study, with 1000 people interviewed.
Headline results found that fear of being gossiped about was one of the most all-pervasive fears, but it also found that one in ten people had been assaulted because of their HIV status, and nearly a third of women, usually by their partners. Self-stigma was more common in men than women, with 40% blaming themselves for their own status. Only one in 44 respondents had used the law to combat discrimination, but three-quarters had helped other people with HIV and over a third had confronted or educated people who had stigmatised them. About three-quarters had disclosed to at least one person close to them but in a quarter of these cases they were ‘outed’ as HIV-positive by a third party.
In 2009 the Stigma Index gained real traction. The UK is one of about 20 countries to have conducted a full study this year, and results will be announced at a launch in the House of Commons on 30 November. Preliminary findings suggest lower levels of gossip, harassment and violence in the UK, but quite high levels of stigmatisation by healthcare workers and educational institutions, and higher levels of self-stigmatisation, shared equally between men and women.
Some previewed quotations from the interviews bring to life these themes:
“When the nurse put on two gloves I was so humiliated, I mean who taught her to do that?”
“I am an asylum seeker and people don’t want people who have nothing. I am HIV positive. If I could get rid of just one of these things…”
Other countries to report around World AIDS Day include China, Thailand and Bangladesh, and the process is underway in the Philippines, Pakistan, Mexico, El Salvador, Columbia, Argentina, Zambia, Kenya, Nigeria, Fiji and Ethiopia.
In the UK the Index was funded by the MAC AIDS Foundation and the Scottish Government; more money will be needed for a detailed analysis and report next year, which will include the stories from participants to bring the data alive.
Are the self-selected Stigma Index interviewees representative of people with HIV?
“Sampling is word of mouth,” agrees Lucy Stackpool-Moore. “So they had to be linked into some sort of network. But many people had never disclosed to anyone in their family, for instance”.
The main aim of the Stigma Index is to establish a baseline for the future. The idea is to repeat the exercise every few years to see how HIV stigma, or people’s experience of it, changes. The UK survey is big enough to get some really specific results: “We could see, for instance, if people in London had different issues from people in Manchester, or asylum seekers from gay men,” Lucy says.
The other aim is to influence policy. Some prevention interventions, for instance, may fail because they are ill-informed about feelings on issues like testing or disclosure.
The Stigma Index won’t ascribe a stigma rating to countries. To do so, given the complex nature of stigma, would be impossible.
“We don’t want to reduce experience to numbers,” says Lucy. “But we do want to capture it in the most scientific and quantitative way we can, and to ensure that the experience of people living with HIV informs future developments that are supposed to benefit them.”
1. Goffman, Erving Stigma: notes on the management of spoiled identity. Prentice-Hall, 1963. Latest issue Penguin Books 1990.