HIV stigma

Will just start by reiterating: It was not my "fault" that I got HIV. I am not to blame. My sexuality, my mentality, is all part of who I am. The events that led up to me being infected, including the reason why I was reckless and didn't care, were all part of the random chance that is what living in this universe involves. I did not deserve to get HIV. Nobody does. But it happens. That's life.

I've been over the last few days been considering the continuing attitudes in the community towards HIV. I think what triggered it was the other week when I was refused income insurance after filling out an online form with the HIV disease singled out against all other human diseases, given it's very own question in fact. Why weren't other diseases given the same importance? Diabetes, cancer, or any number of other things that have a tremendous impact on a person's health.

Recently someone mentioned to me that if they had cancer they'd be able to tell everyone, but because their disease is HIV there is a whole issue of disclosure and fear surrounding the subject. A concern that people may recoil in horror instead of offering support and love. 

So I've asked myself, why is HIV so stigmatised? Given how treatable it is now, why is there still this social discrimination existing in the community?

I consider myself lucky in a sense that I'm the sort of person now who just doesn't give a fuck what people think. Have been through so much shit I just am over worrying about things like that. People can judge me if they want, I just don't care. They have no idea what I've been through to be where I am today, and I can't be bothered explaining it to them. I just think that those who judge HIV+ people are ignorant and small minded, with a lot of growing up to do. Stigma for me then almost becomes a non-issue.

But that doesn't change the fact that there are a lot of HIV+ people who are deeply affected by HIV stigma. Until recently I had no idea really just how far reaching this can be. Why should we have to fear if someone finds out about our status? Obviously that's a very complex subject. but in the end HIV is simply a disease. There is no moral imperative attached to it. HIV doesn't discriminate. People do.

In a now classic statement, the sociologist Erving Goffman (1963) defined stigma as a “significantly discrediting” attribute possessed by a person with an “undesired difference”. Stigma is a powerful means of social control applied by marginalizing, excluding and exercising power over individuals who display certain traits. It is a common response to perceived threat when escape from, or the destruction of, this threat is impossible.

While the societal rejection of certain social groups (e.g. “homosexuals”, injecting drug users, sex workers and migrants) may predate HIV/AIDS, the disease has, in many cases, reinforced this stigmatization. By attributing blame to specific individuals and groups, society can absolve itself from the responsibility of caring for and looking after such populations (McGrath, 1992). This is seen not only in the manner in which “outsider” groups are blamed for having brought HIV into a country or neighbourhood, but also in how such groups are subsequently denied access to the services and treatment they need.
.......................
An historical and sociocultural perspective may be helpful in understanding the negative reactions triggered by HIV/AIDS. In previous epidemics, the real or supposed contagiousness of disease has resulted in the isolation and exclusion of infected people (Volinn, 1989; Gilmore & Somerville, 1994). Sexually transmitted diseases in particular are notorious for triggering such socially divisive responses and reactions (Carrara, 1994; Goldin, 1994).

From early in the AIDS epidemic, a series of powerful metaphors were mobilized which serve to reinforce and legitimate stigmatization. These include HIV/AIDS as death (e.g. through imagery such as the Grim Reaper); HIV/AIDS as punishment (e.g. for immoral behaviour); HIV/AIDS as a crime (e.g. in relation to innocent and guilty victims); HIV/AIDS as war (e.g. in relation to a virus which needs to be fought); HIV/AIDS as horror (in which infected people are demonized and feared); and HIV/AIDS as “otherness” (in which the disease is an affliction of those set apart). Together with the widespread belief that HIV/AIDS is shameful (Omangi, 1997), these metaphors constitute a series of “ready-made” but highly inaccurate explanations that provide a powerful basis for both stigmatizing and discriminatory responses. These stereotypes also enable some people to deny that they personally are likely to be infected or affected.

People living with HIV/AIDS are seen as ignominious in many societies. Where the infection is associated with minority groups and behaviours (for example, homosexuality), HIV/AIDS may be linked to “perversion” and those infected punished (Mejia, 1988). In individualistic societies, HIV/AIDS may be seen as the result of personal irresponsibility (Kegeles et al., 1989). In yet other circumstances, HIV/AIDS is seen as bringing shame upon the family and community (Panos, 1990; Warwick et al., 1998). The manner in which people respond to HIV/AIDS therefore varies with the ideas and resources that society makes available to them. While negative responses to HIV/AIDS are by no means inevitable, they not infrequently feed upon and reinforce dominant ideologies of good and bad with respect to sex and illness, and proper and improper behaviours (Warwick et al., 1998).

De Bruyn (1999) has recently identified five factors as contributing to HIV/AIDS-related stigma:

the fact that HIV/AIDS is a life-threatening disease;

the fact that people are afraid of contracting HIV; 

the disease’s association with behaviours (such as sex between men and injecting drug use) that are already stigmatized in many societies; 

the fact that people living with HIV/AIDS are often thought of as being responsible for having contracted the disease; 

religious or moral beliefs that lead some people to conclude that having HIV/AIDS is the result of a moral fault (such as promiscuity or “deviant” sex) that deserves punishment. 

HIV/AIDS-related stigmatization causes resources essential to preventing infection to be displaced. People are victimized and blamed, social divisions are reinforced and reproduced, and new infections continue to emerge as long as people misread the nature of the epidemic and its causes. More importantly, while negative responses of stigmatization and discrimination seemingly give cohesion to societies and communities, they lead to greater instability in the long term. The social categories and barriers that have been constructed around it cannot contain HIV/AIDS. It requires a more effective means of prevention than this.
Link

There's been some research done into this here in Australia, with support strategies suggested. I don't know how far they've gone with this, although I have seen some focus on the stigma thing lately by ACON.

Support strategies 

HIV positive men all had experienced and strongly endorsed the use of professional advice and social networks as a means of support in living with HIV. However, few men identified specific support that was aimed at building resilience to discrimination. It was felt that agencies tended to focus on ensuring all basic physical and mental needs were met (and had to due to limited funding), rather than on providing ‘tools’ to enable men to live more confidently in the community. It was identified that there is a need for support strategies to include practical ‘skills’ to assist men in dealing with issues such as disclosure, living with limited funds, taking care of general health, and the building of social support systems with other HIV positive men with whom experiences can be shared.

Link