Stigma begins at home

The stigma attached to having HIV is one of the most all-pervasive aspects of living with the virus. HTU plans a series of articles addressing this complex subject. In the first, guest writer Michael Ratsey discovers that some of the people who most strongly condemn or shun people with HIV are members of the communities most affected by it. This also has implications for HIV prevention, he finds.

Stigma is more subtle in these post-HAART days and may therefore be even more difficult to tackle – based less on the fear of the illness and more on the disapproval of the type of person who is seen to have HIV. We might expect stigmatising attitudes and behaviour to come entirely from the sections of society that are mostly untouched by the virus, where ignorance could be an attributing factor. Or does stigma also exist within the communities where HIV information is widely available and HIV is an integral part of life? The answer, sadly, is yes.

Stigma and risk within the gay community

In response to an online video on stigma made by Cass Mann, the founder of holistic gay men’s HIV charity Positively Healthy UK, one viewer commented:¹

‘I, as an HIV-positive gay man, have experienced more HIV stigma and discrimination from other gay men than from any other members of human society. These HIV-negative gay men treat me as if I was a piranha in their goldfish bowl and a ghost at their banquet…..’

Some of the findings of a 2009 Sigma Research paper on criminalisation of HIV transmission make for very disturbing reading.² Couched within the responses is an unexpected stigmatisation by gay men towards HIV-positive gay men.

We have to look from within, deal with our own demons, be comfortable in our skins, ask ourselves what we are afraid of, learn not to be apologetic for getting on with our lives and...remain productive members of society and equal citizens. Winne Ssanyu-Sseruma

Overall, 57% of gay men supported the imprisonment of people with HIV who had infected a sexual partner with the virus. One of the factors involved in the support for criminalisation seemed to be an outdated view of the inevitably lethal nature of HIV, with little appreciation of the effectiveness of HIV treatment. Some individuals equated the transmission of HIV with murder. One of the components of stigma is ignorance – ignorance often clung to because it justifies stigmatising views.

“These responses reveal the perception that there is little capacity for living well or longevity among people with diagnosed HIV”, write the researchers, “getting HIV is regarded as utterly disastrous.”

The researchers believe that the findings of the report have important implications for HIV health promotion. They note that “the perception that HIV equals certain death helps to maintain the stigma related to HIV, which in turn, negatively impacts on the environment in which prevention interventions occur.”

Because HIV–positive gay men often fear reaction from disclosure, they may seek out sexual situations where they are not obliged to disclose. Another Sigma Research survey, for instance,^3,4  found that many men used saunas, not just because sex was readily available, but also because they rationalised that almost all other sauna users were HIV-positive. Some men tried to avoid disclosure but maintain their sense of moral integrity by suggesting to sexual partners that it would be a good idea to use a condom, but even this was fraught with the risk of rejection; for instance, one man described how this suggestion prompted one sexual partner to ask directly whether he had HIV. When he said yes, the man became angry and left.

UK Community Advisory Board member Robert James, who is not gay but does have HIV, sees it this way: “I suspect that reduced risk of rejection versus the hard task of disclosure and the likelihood of rejection makes going to saunas feel like a rationally made choice. The fear of being prosecuted may also increase the preference for anonymous venues.”

Understandably, but unfortunately for its impact on HIV prevention, gay men with HIV feel that it is much harder to disclose in sexual situations than in social situations. Gay men recently interviewed for GMFA’s FS Magazine emphasised how difficult this was.⁵

James, a 29-year-old recruitment consultant, said he talked with friends about HIV “almost every day, because a lot of my friends have HIV.” But when asked if he spoke about HIV before having sex, he said: “Never, I just wouldn’t. It’s bad enough trying to get someone to put a condom on, let alone talking about HIV.”

Andy, a 22-year-old art dealer, said he thought that gay men had trouble talking about HIV because “there’s a real stigma attached to being HIV-positive and gay. But,” he acknowledged, “the less people talk about it, the more stigma there is, so not talking about HIV creates a vicious circle.”

Even in the relatively anonymous environment of internet cruising sites, few men explicitly advertise their HIV status on their profile, though more may mention it during private instant messaging. HIV-positive men often report looking for clues in other profiles.

I conducted an ad-hoc survey in late March of the profiles of 200 UK men using the ‘HIV cruising room’ on Gaydar.  Presumably the majority of men using this chat room were looking for an HIV-positive partner and were probably HIV–positive themselves. But nearly 60% gave no clue at all of their HIV status, and only 14% stated it. The remaining quarter couched a possible HIV-positive diagnosis under the sexual preference categories of ‘rather not say’ or by ticking the ‘safer sex needs discussion’ box. The few who did disclose directly in their profiles often took an aggressive slant in a follow-up sentence; “I'm HIV-positive – and if you can't cope with it then look elsewhere!”

HIV is not the only infection that can stigmatise gay men. An increasing number of HIV-positive men are also becoming infected with hepatitis C (see HTU 185, April 2009). In a small survey of six co-infected men, all said they felt stigmatised by their own community. Furthermore a hepatitis C diagnosis can lead to greater feelings of shame, guilt, and ‘dirtiness’ as it is not ‘owned’ by the gay community in the way HIV used to be, and is therefore even more marginalised and stigmatised.⁶

Stigma within the African and Caribbean communities

Winnie Ssanyu-Sseruma, former chair of the African HIV Policy Network (AHPN), who now combines working for Christian Aid in the UK with running a ‘breakfast club’ for HIV-positive schoolchildren in Uganda, says that many Africans in the UK have multiplelives, maintaining a life in the UK and a life ‘back home’ where their families and often children still reside. People don’t necessarily want to be open in all arenas.

A 2007 study found that although African people account for the greatest number of new HIV diagnoses in the UK, many African people still do not come forward for testing or to access health services.⁷ About 60% of Africans in the UK have never tested for HIV and therefore do not know their status.⁸ A 2008 study⁹ found black heterosexual HIV-positive men and women were the group least likely to tell others about their status, including new partners. A third of HIV-positive African men and 40% of African women had a sexual partner who did not know their HIV status.

What is holding people back from disclosure? Part of the reason may be perceived stigma from within their own communities, rooted in fear of HIV, and at times exacerbated by religion and family culture. Much of the work AHPN does relates to social exclusion, and the organisation reports that in the UK, Africans with HIV are stigmatised not only by the wider UK community, but also within local African communities in the UK. This can lead to low self-esteem, social marginalisation and breakdown of relationships.

The HIV crisis in black African Britain was visible as far back as 1995 but, Winnie comments, the reaction of the government was at best one of inaction or sweeping it under the carpet. At worst, she told The Guardian in 2005, the government left it to Pentecostal churches and lay pastors to deal with the problem.¹⁰

There's a real stigma attached to being HIV-positive and gay. But the less people talk about it, the more stigma there is, so not talking about HIV creates a vicious circle. Andy, 22-year-old gay man

The African community is not the only UK black community that may suffer from actual or perceived stigma. A 2008 study¹¹ found that HIV–positive people of Caribbean descent were keenly aware of HIV-related stigma in their communities. Respondents in the survey often expected to be treated like lepers, and had experiences of enacted stigma such as excessive cleansing of household objects and family exclusion. Similar situations were recorded by the same researchers within the African community a few years earlier:

‘My wife started calling me names. She took the phone, she rang [names an African country], she rang my mom, she rang her parents and she said that she cannot stay with somebody that is AIDS’ - HIV positive African man living in the UK¹²

‘Even now it is very hard to tell somebody I am sick, because like our community they take it as a curse, or like you misbehaved or went out with somebody, like they take you as a prostitute, it is an attitude which is very bad…’ - HIV positive African woman living in the UK.¹³

In the study, HIV was also associated with sexual behaviour regarded as immoral, including promiscuity, prostitution and above all, homosexuality. Religion had a strong influence on the perception that ‘sinners’ contracted HIV as a form of punishment.

What can we do about it?

While a lot of in-community stigma is deeply psychological and hard to eradicate, a lot is simply founded in ignorance.

Various campaigns have attempted to address both the ignorance and the underlying attitudes. The ‘Changing Perspectives’ campaign, for instance, was launched by AHPN¹⁴ to encourage faith communities, the media and the government to address HIV-related stigma and discrimination. A media watchdog group, Press Gang, has also been set up by the National AIDS Trust (NAT),¹⁵ encouraging people with HIV to report and reply to overt or covert stigmatisation in media pieces on HIV. NAT also worked with the National Union of Journalists to produce guidelines on reporting HIV to help journalists ensure the articles they write are not misleading and do not encourage negative perceptions about HIV.¹⁶ Journalists need to be encouraged to report on the human stories behind living positively with HIV rather than always perpetuating the misinformation and myths that exist around it.

An important factor in dealing with stigma is coming to terms with what HIV means to us as individuals. As Winnie Ssanyu-Sseruma wisely says, ‘as individuals we have to look from within, deal with our own demons, be comfortable in our skins, ask ourselves what we are afraid of, learn not to be apologetic for getting on with our livesand as far as possible remain productive members of society and equal citizens.”

For some, a further step will be disclosure. Being positive about being positive is an attractive characteristic and the fear of stigma is often worse than the reality of disclosure. UK African HIV organisations have consistently taken this line in recent years and in campaigns such as Changing Perspectives, have trained-up people with HIV to be community spokespeople, realising that there is nothing that better neutralises stigma than the presence of an authoritative and confident HIV-positive person talking about their status. There’s even a study which shows that disclosure is an independent predictor of higher CD4 counts.¹⁷

It is human nature to seek out support and empathy and being able to be open with friends, family and partners can be an important part of this. But whether or not someone is open about their HIV in their personal life, the support of other people with HIV, through self-help groups composed of kindred spirits can be valuable. HIV–positive people often gain strength from other HIV–positive people and there are various ways of making contact with people - from websites like HIVmatch.co.uk and plus-friends.com to local HIV community organisations. Support also begins at home.

HTU intends to cover other aspects of stigma and discrimination, including stigma within healthcare, anti-discrimination legislation, how we measure stigma, and its effects on mental health, in future issues. If you have been affected by stigma or want to write about it, contact the Editor.

NAM produces a booklet called HIV & stigma, which is available on aidsmap.com. Alternatively contact us for a copy by calling 020 7837 6988 or emailing info@nam.org.uk.