Internalised Stigma

A contribution to the Learning  Positive site:  an amazing resource for students and teachers to learn about HIV in the UK . The website will be launched on the 27th of February.

What Does Stigma Mean to You?

1. Labelling – dirty

2. Name calling – Prostitute

3. Looked down upon

4. Discriminated against

5. Disapproving

6. Shame

7. Indifference

8. Blame culture

9. Unworthy

10. Held-back

11. Anger

12. Taboo

13. Judgemental

14. Second-class citizen

15. Disclosure

16. Harassment

17. Fearful-ostracised

18. Stress

19. Isolation

20. Anxiety

21. Unfair treatment

22. Seen last during appointments

23. Rejection

24. Lack of confidence

25. Bullied-victimised

26. Ongoing suffering

27. Powerlessness-no voice

28. Marginalised-invisible

29. Worthless

30. Dehumanised-sub-human

31. Unloved

From POZFEM-UK flipcharts. Northern Meeting, Newcastle 6-7 June 2009

Edwin Cameron on Stigma

Edwin Cameron is one of my heroes. He is a judge at the Supreme Court in  South Africa,  openly gay and living with HIV. Edwin Cameron is probably the only person openly living with HIV in a high profile public position in Africa (and as far as I know the world).

In his autobiography, ‘Witness to AIDS’, he speaks eloquently about stigma.  Here is an excerpt:

“…Why is there such stigma? Stigma often accompanies those diseases that are seen as incurable, deadly, transmissible and disfiguring. But it seems to mark most severely those conditions when the affected person is seen as responsible for getting the disease.

AIDS fits all those categories. As the new drugs become increasingly available, the stigma from incurability will surely wane. [...] As more and more people are diagnosed and speak out, the stigma from silence will also wane.

But there remains something even harder to grapple with. The most inaccessible, the most intractable element of stigma is the disfiguring sense of shame  that emanates from the internal world of some with HIV or AIDS. This sense colludes with external stigma, overcoming efforts to deal with the disease rationally, keeping those with AIDS or HIV in involuntary self-imposed isolation, casting a pall of contamination and silence over the disease.

What causes this shame? I don’t know. Without special expertise in behaviorism, psychology or the human soul, I can only cast within myself for some inkling of the truth. And my conjecture, neither novel, nor dramatically revealing, is that it is to do with HIV and sex. HIV is a sexually transmitted infection. Perhaps other sexually transmitted infections leave similar feelings. I do not know, since (perhaps ironically) the only one I have ever had is HIV. That has been my fortune, where life’s forces have taken me.

Why does sex leave shame? Perhaps it lies in the embarrassment that arises from exposure of what one thought was utterly private and intimate. Perhaps to admit to having a sexually transmitted infection is to be caught out in an act of sexual intimacy, with all its attendant embarrassment – and shame. Pregnancy, too is a sexually transmitted condition. Women made to wear the scarlet letter in the darker days of sexual oppression might have experienced a comparable sense of shame. But pregnancy is a condition, not an infection. A pregnancy, even one unwanted, even one deemed illicit, holds life and hope and the possibility of growth and fullness. Infection with HIV offers none.

Certainly for me some of the internal shame seemed to come from the fact that my HIV came from a sexual act. In my case it was male to male penetrative sex. When my doctor told me that I had HIV that Friday afternoon in 1986, I was a gay man recently come out. Though always in my practice and social and political life, I expressed myself as resolutely open and proudly gay, perhaps my sense of shame derived from the fact that my virus was homosexually transmitted. Or so I thought.

But this was wrong. As the African epidemic took hold and spread, it became clear that I was not alone. For millions of heterosexuals Africans with AIDS or HIV it is no different. Their shame about HIV is as intense. Even women who say that they married as virgins and remained celibate within their marriages express shame at their condition, and experience the difficulty of speaking out about having HIV.

Perhaps therefore the internal stigma is connected with the merely sexual – not homo- or heterosexual. Perhaps in our deepest selves we feel that a sexually transmitted infection shows other that we have been ‘caught out’.  The infection leaves a mark, a stain, a print, linking us back to an act so private, so intimate, so sacrosanct, so emotionally and spiritually unguarded – the moment of sexual coupling – that its external manifestation in an illness, its exposure to the world, is deeply embarrassing and therefore shameful.

Perhaps we still regard ourselves as guilty of some sort of sin of sexual contamination, as marked by moral inferiority, by an uncleanness or exposure of body, and hence a sense of moral inferiority. Some religious moralists inflame all this. They forget that AIDS is a disease. We all do.

The Stigma Index

I spent the past weekend in London facilitating with Fiona from ICW the PozFem  Eastern Meeting.

Once I got over the fact that I was working during the most sunny weekend of the year (and knowing England it may as well be the last!) it was a really intense and moving couple of days. We were only a small group, around 15 women. A few of us from London and the rest from places around London like Southend and Brighton. We were an amazing mix of nationalities from South Africa to Romania via Kenya, Zimbabwe, Spain and more countries that I can remember.

One of the best part of the meeting was spent taking part in the People Living With HIV Stigma Index. This is a fantastic project which will be run globally. It is set to measure in an ‘objective’ way levels of stigma in several countries. The UK is one of the first countries to take part.

One of the most exciting things about the Stigma Index is that the researchers themselves are HIV postive people who have been trained to carry out the interviews. In this way we hope that the whole process of gathering information and sharing experiences of stigma will be an empowering one. This is extremely important because talking about stigma is so painful and difficult.

Stigma manifests itself in subtle ways. So often people with HIV are still portrayed as dangerous, vectors of infections, dirty, deviant and contaminated. There is this image in the collective mind that we are a threat. I believe that the global trend of criminalizing HIV transmission is a concrete manifestation of those negative attitudes regarding HIV. For many HIV is not just a virus: HIV is a crime, HIV is a moral judgment.

I really hope that by creating  more solid evidence around stigma we will be on the right path to eliminate it.

After we completed the questionnaire we spent time discussing how stigma had affected us. We felt that the questionnaire maybe couldn’t capture the longer lasting scars of having experienced stigma. Once that sense of shame and worthlessness is installed in you, it takes a long time to heal and get the strength and the courage to really believe in ourselves. How do you measure internalized stigma and the destruction it brings to our lives?

I was very tired last night…Not just for having worked for 7 days without a break, but also because of the intensity of the emotions shared. However, I was also hopeful that what us, a small group of women, had done by shutting ourselves in a room during a sunny weekend, will make a difference.

At the end of yesterday, when  we were doing our closing round, commenting on the the lessons we  learnt, one of the women said ‘ I take away…that if Silvia can…so can I!’ It is words like this that help me overcoming me the sadness and sense of worthlessness that I have been fighting within me for so long. I have learnt that the support and feedback we give to each other are one of the greatest tool we have to overcome internalized stigma, and the chronic low self-esteem that goes with it.