- Regarding the title of the text dealing with stigma: The original is a typical London idiom: Punching Fog <=> Punching the fog - Incompatible with the reality of more than two-thirds of Brazil and I sought the most similar. Initially, I chose "a knife-edge punch. It seemed good, but it is not. I changed this 14 hours before the publication is already scheduled and I keep the difference in the formatting of the text trying to legitimize what I say after all, in the general statement certain things are nothing more than a "slight twist in my sobriety." :-P. Still, in an African country, people with AIDS are called "Londoners", in their language, it is true, in an allusion to the beginning of the epidemic there, that came "carried by Englishmen" who had presented its first symptoms there same and this generated yet another stigma but, pOn the other hand, in a country where AIDS is treated as AIDS, there is no "Aids" or "AIDS". There are "Sidosos and Sidosas". We, humans (???) are excellent at labels. And when we come to live the risk of being at the other end of the whip, this is what I see, the person who is afraid to hear what they thought of people with HIV until, finally, they understand that to get AIDS Just a vacillus (...), a misstep, or a two-second oral sex session ...
HIV is a stigmatizing condition, this is a peaceful matter (in the sense of undeniable only, for the foolish on duty). "Becoming HIV-positive is almost 100 percent risk of disapproval, rejection, or worse. People can also self-stigmatize themselves by blaming themselves for having the virus.
How to reduce stigma is still obscure. Although we can legislate against discrimination, tackling attitudes is much more difficult. "This publisher has a baseball bat at home and he is like a certain sponge, has a thousand and one utilities (...).
Anti-stigma initiatives are useless unless we understand exactly what we are trying to combat and how we can do it.
Stigma describes something that we attribute to people perceived to offend others (the society itself) against how we think people should be (such common sense), or "morality" and "good manners".
The American sociologist Erving Goffman in his seminal book described this as an intensification of our normal expectations of people.
"We rely on these anticipations that we have," he said, "turning them into [...] demands that are well presented and irrefutable."
Who is this "we"?
Well, it is unlikely that one is free from stigmatizing attitudes toward others.
- What do you think of the bankers who earn bonuses?
- From AIDS denialists?
Even members of a stigmatized group can stigmatize others, and we often do it to those closest to us. In June, HTU looked at how HIV is stigmatized by gay men (see Stigma Begins at Home, issue 187). [Editor's note: I already have the text in hand and I ask only time and patience, the key to everything, to present it indexed here 16 / 06 / 2017]
Yusef Azad is the Director of Policy and Campaigning for the National AIDS Trust (NAT), which campaigned against stigma and discrimination in the past. Azad now makes a careful distinction between three concepts.
"Discrimination is the simplest of the three to face," he says:
"It's a legal concept, a concrete and identifiable way of harming someone by treating them differently. It may be the result of prejudice or stigma, but you do not have to look at motivations or reasons to prove discrimination. "
"Prejudice consists of unjust, stereotyped, and generally negative assumptions about another person based on the group to which they are viewed."
Prejudices still can not be stigmata. "The stigma is different because it has a concept of shame about it," says Azad.
"In stigma, a belief system is actually shared by the stigmatizing and stigmatized. The stigmatist fears becoming the kind of person he hates, and the stigmatized person feels [that] shame ... Stigma has control over people: it's what's so toxic and unfair in all of that. "
"Stigma is absolutely dependent on the stigmatized person to feel really doomed in terms of being ashamed," says Azad. "Organizations like NAT can combat discrimination, and we may even help make public expression of stigma unacceptable. But the only thing that prevents stigma is that people with HIV refuse to feel the stigma. Why should they do this? Because only they can. "
When the nurse put on two gloves, I was so humiliated, I mean, who taught her how to do that?
A response from the 2009 Stigma Index
Aware of this, a group of HIV positive activists have developed an ambitious project to measure, describe, codify and combat stigma against people living with HIV: the Stigma Index of People Living with HIV, a joint project of the International Foundation for Plenary Prevention (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 a stigma assessment tool and a community development tool. He recruits HIV-positive people to be community researchers, conducting interviews with other HIV-positive people, and asking about all aspects of the stigma experience.
The Index asks only about experiences felt and / or lived during the last year, so that people's memories are fresh and the results of the later years can be compared. Covered areas include:
- Basic demography, access to health care and medicines;
- Reason for HIV testing;
- Disclosure to others and their reactions;
- Experience of exclusion from family gatherings, religious activities, social groups, etc., or sexual rejection by partners;
- Whether people had been intimidated, persecuted, threatened or insulted;
- Discrimination: in employment, education, housing and health services;
- Self stigma: feelings of shame, guilt, self-blame, suicide, etc.
- Self exclusion: opting out voluntarily or avoiding jobs, social groups, relationships and so on;
- If people knew that people with HIV were protected by laws such as, in the United Kingdom, the Disability Discrimination Act;
- If the respondent has already helped another person with HIV, has joined a voluntary organization or was an HIV activist.
The countries themselves may ask supplementary questions; For example in the United Kingdom, there was a supplementary section on criminalizing HIV transmission.
The stigma index depends entirely on the people who present themselves. Participants are guided by trained facilitators and fill out a questionnaire of 24 pages individually. Open discussions and telephone follow-up interviews are used to collect more qualitative data. In the UK, 867 people, recruited through community groups, were interviewed.
"More than we expected," says IPPF's Lucy Stackpool-Moore, who coordinated the Index here.
Small pilot studies tested the types of questions in 2006 and, last year (2008), the Dominican Republic became the first country to conduct a full study of the stigma index, with 1000 people interviewed.
The results of the study found that the fear of being "mote to gossip" was one of the broader fears, but also found that one in ten people had been assaulted due to their HIV status and that of this group, almost a third of the victims Were women, usually by their partners.
Self-stigma was more common in men than in women, with 40% blaming themselves for their own status. Only one in every 44 interviewed used the law to combat discrimination, but three quarters have helped other people with HIV and more than a third have confronted or educated people who have stigmatized them. About three quarters revealed the at least one person close to them, but in a quarter of these cases they were "Expelled" As HIV-positive by a "third party" [Which often does the role of bouncer's "group or * family *.
In 2009, the Stigma Index gained real strength. The UK is one of about 20 countries that conducted a full study this year, and the results will be announced in a release in the House of Commons in 30 in November. Preliminary findings suggest lower levels of gossip, harassment and violence in the UK, but rather high levels of stigmatization by health professionals and educational institutions and higher levels of self-stigmatization, shared equally between men and women.
Some previous quotes from interviews bring life to these topics:
"When the nurse put on two gloves, I was so humiliated, I mean, who taught her how to do that?"
"I am an asylum seeker and people do not want people who have nothing. I'm HIV positive. If only I could get rid of one of those things ... "
Other countries reporting similar studies for World AIDS Day include China, Thailand and Bangladesh, while the process is also underway in the Philippines, Pakistan, Mexico, El Salvador, Colombia, Argentina, Zambia, Kenya, Nigeria, Fiji and Ethiopia. [The Editor asks: Brazil? ... (...) (pqp)]
In the United Kingdom, the Index was funded by the MAC AIDS Foundation and the Scottish Government; More money will be needed for a detailed analysis for next year's report which will include the participants' stories to bring the live, vivid and vivid data.
Are self-selected interviewers for the index being representatives of people with HIV?
"Sampling is word of mouth," agrees Lucy Stackpool-Moore. "So they had to be connected to some kind of network. But many people had never revealed to anyone in their family, for example, their serological condition. "
The main purpose of the Stigma Index is to lay a foundation for the future. The idea is to repeat the exercise every few years to see how the stigma of HIV, or the experience of people, changes. The UK survey is large enough to get really specific results: "We can see, for example, if people in London had different problems from people in Manchester, or if there were problems for asylum seekers of gay men," says Lucy .
The other goal is to influence politics. Some prevention interventions, for example, may fail because they are poorly informed about feelings on issues such as testing or disclosure.
The stigma index will not assign a stigma rating to countries. For this, given the complex nature of stigma, it would be impossible to establish an adequate equation."We do not want to reduce experience to numbers," says Lucy. Translated into 16 / 06 / 2017 by Cláudio Macedo, from the original in Punching fog - how people with HIV are tackling stigma worldwide, Published in 1 of November of 2009 by Gus Cairns in the Aidsmap