Stigma and HIV. The face-to-face relationship between these two things has been known to me since before I "had HIV". I remember a DJ, M. who had contracted HIV and discovered it in its most devastating stage, AIDS. He told me he had AIDS, “the bug caught me”, he said, in reference to the “bug of aham” in a certain publicity. His phrase:
I can't work, the tiredness is so much that I end up so tired that I sleep in the sound booth. Then they found out why and no one lets me work anymore.
I tried to gather “my professional category” to guarantee him some livelihood. Everyone promised, no one came. Except the Love Story DJ. We did what we could. But, as a couple ... interesting was that he said to me:
-Don't tell anyone that I helped, I don't want to have anything to do with it!
When I needed help… Well, just go to this text:
And I believed that things were bad in 2017
🙄 Although old, the text is also old and perennial the stigma; I found the text, read it, considered it appropriate, translated it, made one or another intervention, which is almost impossible for me, not to do, and there it is. To read and reflect, especially with regard to self-stigma and in the absence of our country, formerly a protagonist in the fight against AIDS and today viscerally against the rise of new cases, growth of deaths, structural ruptures between the public power that has left the social protagonists of the third sector, of many and so many achievements practically to the minimum, with Non-Governmental Organizations literally in the ICU and the Country itself, also absent in initiatives like this.
It makes me fear for the future, since even Bolsonaro ran for president and ranks second in voting intentions, with Lula in first. Well, there are others who want to “run after the PRESIDENT'S RANGE OF THE REPUBLIC and that have, for a long time and nowadays, public fame and notorious types (sic) that, in fact, are more for bandits, pustules, swindlers…
Prejudice and people living with HIV
Symbiosis or parasitosis?
“In stigma, a belief system is really shared by the stigmatizer and the stigmatized. The stigmatizer fears to become the type of person he hates, and the stigmatized person feels [that] [in] shame… Stigma has control over people: it is what is so toxic and unfair in all of this “.
"Stigma is absolutely dependent on whether the stigmatized person really feels condemned, in terms of being ashamed," says Azad. “Organizations like NAT can fight discrimination, and we can even help to 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 that? Because only they can. “
When the nurse put on two gloves, I was so humiliated, I mean, who taught her to do that?
Aware of this, a group of HIV positive activists developed an ambitious project to measure, describe, code and combat stigma against people 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 that the results of 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 interviewee has already helped someone else with HIV, if he or she 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 work found that the fear of being a “motto to gossip” was one of the most comprehensive fears, but also found that one in ten people had been mugged 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 44 respondents used the law to combat discrimination, but three quarters helped others with HIV and more than a third confronted or educated people who stigmatized them. About three quarters revealed to at least one person close to them, but in one quarter of these cases they were “Expelled” as HIV-positive by a “third party” [who often plays the role of bouncer in the “group or family.
In 2009, the Stigma Index gained real strength. The United Kingdom is one of about 20 countries to have completed a full study this year, and the results will be announced at a launch in the House of Commons on 30 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 got so humiliated, I mean, who taught her 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 that have reported 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. '
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 HIV status. ”
The main objective of the Stigma Index is to establish a basis for the future. The idea is to repeat the exercise every few years to see how the stigma of HIV, or people's experience, changes.
The UK survey is big enough to get really specific results: "We can see, for example, if people in London had different problems than 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.
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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.
If you liked this text, you might like this: Stigma, HIV and AIDS
Or this: AIDS and Legality Withheld.
Translated on 16/06/2017 by Cláudio Souza, from the original in Punching fog - how people with HIV are tackling stigma worldwide, published on November 1, 2009 by Gus Cairns in Aidsmap