“HIV the disease is the easy bit. It’s how other people relate to us being positive, that’s the difficult bit.”
Prejudice & stigma
Prejudice means judging somebody without really knowing much about them. Stigma occurs when we ‘label’ somebody in a way that hurts their standing in the community, e.g. as immoral, deviant, or less than human. Stigma can have terrible consequences, including dividing or isolating people and contributing to poor health. Stigmatised people often believe that they are somehow ‘bad’. For instance, one man we talked to thought that his physical pains were punishment for having HIV until his nurse told him this was not true.
The fear of stigma can also affect people even if they do not actually experience stigma in real life. For instance, in the late 1980s, one gay man told no-one his partner was dying from HIV because “there was a stigma attached to it,” yet he “desperately, desperately wanted to tell someone.” He later found that people around him were accepting of HIV when his partner died.
In 2005 gay men seemed to feel less need to be secretive about their HIV status, but many Black African people we talked to often said that they still needed to hide their illness from their communities (see ‘Secrecy and telling people’).
People with HIV faced stigma on a number of fronts because HIV touches on so many social taboos including sexuality and sexual orientation, sexual practices (e.g. practicing anal sex), gender roles, morality (e.g. ideas on whether or not they were a ‘good’ or ‘bad’ person), race, mental health and death. Many thought that HIV is especially stigmatised because it is mainly caught through sex and often thought to affect ‘promiscuous’ people. Some people remarked that the only way to overcome prejudice and stigma was to be more open about the disease and try to listen to people who have HIV.
HIV positive can be judged as having been ‘promiscuous’, which is unfair.
Explains that listening to others can begin to break down prejudices.
Stigma feeds off ignorance, since people tend to fear what they do not understand. People we talked to from African communities said that there is much misinformation about HIV in their communities. African participants in particular admitted that they had been ignorant about HIV before they were diagnosed e.g. “I was one of those people, when I used to go to restaurants, I used not to drink from glasses.”
Accurate information can be a powerful antidote to stigma. Gay men in the UK are relatively well informed, although some gay men who had recently immigrated or who were still at school could know less about HIV. However, gay men with HIV still experience and fear stigma in the gay and wider communities, and this particularly worries men living outside London.
Some of his neighbours in a small English village are still ignorant about HIV.
The number of older people (over 50) who are newly diagnosed with HIV is also increasing which may be because they are also less knowledgeable about HIV and less likely to sexually protect themselves.
In the UK, stigma and fear of HIV have lessened. But some people feared that the recent prosecutions of people for the transmission of HIV in the UK through the Offences Against the Person Act may again stigmatise HIV-positive people.
Argues that prosecutions of people for HIV transmission stigmatises him as a potential criminal.
Africans in the UK could be particularly frightened of HIV: “Africans are very, very scared because back in Africa people are really dying. They don’t realise that here in the UK medication can control it and it’s not that easy to pass on.” African participants also reported being socially excluded more than white gay men: “They (Africans) will avoid people nicely, in a nice way, you know.” African participants also worried that rumours would be spread about them. However, some family members who were highly informed about HIV, e.g. health professionals, could be most helpful and supportive.
While shocked about her HIV status, her sister was a health professional with experience in HIV,…
Health care and employment
Although HIV specialist health staff were often highly valued, many of the people we talked to said that other kinds of health workers did not understand the virus, or discriminated against them. There were also concerns that some, not all, employers still discriminate against people with HIV, despite new anti-discrimination laws (the Equality Act).
Discrimination against HIV positive people can, and should, be challenged.
Some employers have policies that support HIV positive people but others do not. (Read by an actor.)
Homophobia and racism
People also had to deal with other forms of prejudice. For the gay men homophobia (fear and hatred of homosexual people) was more of an issue when they were younger when homosexuality was sometimes considered “dark and shameful”. The impression is that homophobia is much less “in your face” as men get older, and London was seen as being more tolerant, and even positive, about homosexuality than areas outside of the city.
Believes that in the current social climate, young gay men in particular can feel ashamed by HIV.
Racism is the belief that some races are better than others, with people from some racial groups having more advantages in society than others (e.g. financial and political). Some African participants had experienced racism and the lack of opportunities for Black people in the UK. It was also acknowledged that the role of racism, when it comes to Africans with HIV, is difficult to gauge since there is such diversity within, and differences between, African networks. This can make it hard for African communities themselves to respond to HIV.
Argues that the health system can be at once caring and hostile towards Africans, and so Africans…
Argues that diverse African communities need a more unified response to HIV. (Read by an actor.)
Fighting back against stigma
History shows that stigma is not inevitable and many people we talked to were very keen to tackle stigma. This was happening in a number of ways:
- by people educating themselves and others about HIV, and joining forces with other HIV-positive people e.g. in social groups;
- people with HIV talking about HIV more openly in their own lives (“I have learnt in my opinion it is better to talk about it because if we don’t there is always going to be stigma”);
- by confronting those who discriminate;
- by viewing HIV as effectively no different from other chronic conditions;
- using humour to confront people;
- the way that others not infected with HIV reach out and show care and support, which made a big difference to people’s lives;
- by participating in this project;
- finally, by recognising that those who stigmatise are actually the victims of stigma. As one man pointed out, his family, who were not supportive when he was diagnosed HIV positive, were victims of the virus because “the society in which they lived would not allow them to be compassionate and talk and get the support they needed.”