HIV stigma & discrimination
'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, death, sexual practices (e.g. practicing anal sex), gender roles, morality (e.g. whether or not they were a 'good' or 'bad' person), race and mental health. 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 were recent immigrations 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.
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,...
The very first person I told was my sister and I had to tell her because she was working in my hospital then. And she… the midwives that were going to be working with me are people she knew, and they knew me as her sister and all that. So there was no way I could keep it away from her.
So I had to tell her, she was OK with it because she apparently had been working with a lot of women. She had been working with… she knew of a lot of women with HIV coming in, but she was very shocked. She was saying oh because we have a lot of people from Uganda and Zambia, from East Africa, again you know, which is true, it's a higher number from that side you know. And she said not really… she's never come across someone from our country and all that. So she was shocked about my diagnosis.
But she was quite good, she was… And I've never had any problems with going to her home and not… people have had experiences of going to people's homes, and using their cups, and then the cup disappears, yeah. And people have been told not to come out of chairs, when they sit in a chair, they say stay there you know, that kind of thing. But my sister she wasn't, she's not like that, she wasn't like that, and she still isn't like that now. So that was helpful because she wasn't ignorant about it, yeah.
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.)
So there's a problem... don't disclose... don't, don't disclose. No it's a diffic, you've got to keep a balance, sometimes you've got to do it, sometimes, you've got to be careful how you handle it you know… Some employer's understand it, they, they are very sympathetic, they understand HIV issues. They understand that HIV positive people are employable... got... the policy... in place.
A number of people... got public and private jobs, in the mainstream jobs, there are quite a number of HIV positive people there. Because some of these employers they've got HIV policies in place. They are being much more aware about HIV, much more... about it. They are not any more ignorant they... or something. So they employ people. And they get more support you know as an employee.
They give more support to... HIV positive people, but not all of them, not all of them, and that's... that's... thing we are complaining about you know… Employers… should educate themselves about HIV issues… and try to have policy in their place of work to be able to employ HIV positive people. They can work. To contribute to society, pay tax.
The good thing... is that the DDA, you know the Disability Discrimination Act which the government has brought in place, that's really helped because HIV positive people have been included in it.
So if the employers throw HIV positive people out it can be taken to court now. About two, two and a half weeks ago, three weeks ago I think, an HIV positive person was sacked from a job, then he took the employers to court and he won his case… After assessing the situation you might find it is good to disclose. Sometimes it makes it easier then…if they have a policy in place.
Homophobia and racism
People also had to deal with other forms of prejudice. For the gay men homophobia (fear and hatred of homosexuals) 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 Africans 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...
Yeah because at the same time the system is very hostile. Yeah, some people when they get tested, will not access services. Yeah they will not access services because they will look at immigration issues, they will look at that.
But you see, at the same time, when you find helpful people, they will try to work around how to normalise your life by even sorting out the issues that you have. You can get hostile responses and you can also get good responses, yes very helpful… Right, yeah it also depends on how you as an individual relate to them yeah…
But also some, some care... I mean some care trusts would be very hostile to such African communities. And while some definitely are very helpful, they don't look at ethnicity, yeah.
And in fact by demography you find that people, you find blacks will be isolated to a certain specific area. Because the systems supports that. Yeah. For instance, if you've go to East London, you find a lot of black people. Because the system supports them. There is no hostile… you know hostility around them, yeah so.
Argues that diverse African communities need a more unified response to HIV. (Read by an actor.)
And it… unless people wake up and says look, this is a problem for the African community as a whole… And you find that some people can even go to lengths and say well it's, maybe it's racism. I say that's not racism, it's just you as a community, you've got problems yourselves. Once you work out the problems, you know these things, you know, it can work for you.
So, I mean the community's so diverse in itself… So, so for me in the field it's really frustrating... But it's a shame, I mean for me there is a huge potential for me to explore, but it's just that, to help secure support for, you know to get the right things in the right place. It's, that's what's frustrating.
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.'
Appeals to people of 'mixed heritage' to overcome stigma and ignorance for their own surivival.
He belongs to many minorities and has to challenge prejudices.
Last reviewed May 2017.
Last updated January 2013.