Us and them

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Post by Jane Costello25 Feb 2011

As someone who has experienced it, Mia Dawson thought she knew what HIV stigma was all about.

Before I sat down to write this, I was pretty sure I knew what I was going to talk about. I mean, most of us living with HIV have experienced stigma at some point? You know... the ‘us and them’ syndrome.

As it turns out, the relationship between HIV and stigma is extraordinarily complex and not easily defined. So, I’d better start with a definition...

"HIV-related stigma refers to all unfavourable attitudes, beliefs, and policies directed toward people perceived to have HIV/AIDS as well as toward their significant others and loved ones, close associates, social groups, and communities. Patterns of prejudice, which include devaluing, discounting, discrediting, and discriminating against these groups of people, play into and strengthen existing social inequalities - especially those of gender, sexuality, and race--that are at the root of HIV-related stigma."1

Part of the problem in defining HIV stigma is that it often occurs in conjunction with other forms of stigma such as misogyny, homophobia or racism.

"The stigma process is entirely contingent on access to social, economic and political power that allows the identification of differentness, the construction of stereotypes, the labelling of persons as different and the execution of disapproval and discrimination."

This complexity has led to difficulty in measuring the extent of stigma, assessing the impact of stigma on the effectiveness of HIV prevention/treatment programmes and devising interventions to reduce stigma.2

These four challenges: defining, measuring, assessing the impact of and reducing stigma, among others have hampered local and global efforts to address [HIV] stigma.3

As a positive woman, I am often faced with value-based assumptions made about my morality, promiscuity or, at best, my personal irresponsibility.

There is a misperception that being positive, and a woman, I must be an injecting drug user or a sex worker. (However, simply making this statement reveals the multi-layered nature of stigma in that by using those labels in a negative way, there is an implicit acceptance of societal stigma against injecting drug users and sex workers.)

"The complexity of the phenomenon has led to difficulties and disagreement about how to define [HIV] stigma and, sometimes, to an erroneous conflation of stigma with its related concept of discrimination. The manifestation of [HIV] stigma not only varies by cultural/national setting, but also by whether one is considering intrapersonal versus societal levels of stigma."4

While HIV stigma exists on a worldwide basis, its manifestations are many, and vary by country, cultural or religious grouping, governmental system, social structure, community, gender and individual. However, stigma can be self-imposed or perceived, as well as societal or institutionally based.

"Conceptualising stigma as a combination of an individual and social phenomenon underscores the importance of addressing self-imposed, individual, as well as structural (or institutional) discrimination."5

So why is all this important?

HIV stigma and discrimination are considered to be major contributory factors in the spread of the disease and in weakening attempts to combat the epidemic.
On a personal level, ‘in addition to devastating the familial, social and economic lives of individuals, [HIV] stigma is cited as a major barrier to accessing prevention, care and treatment services.6

On a national or international level, the stigma associated with HIV can "deter governments from taking fast, effective action against the epidemic"7 and to impose discriminatory laws, policies and regulations that create obstacles to effective HIV responses in the areas of HIV treatment, prevention, care, support services and human rights.

In an op-ed piece for The Washington Times in 2008, UN Secretary-General Ban Ki-Moon summed up the effect that stigma has on HIV treatment and prevention strategies thus:

"One of the biggest hurdles for our global response to AIDS is psychological."

That is the stigma factor. To greater or lesser degrees, almost everywhere in the world, discrimination remains a fact of daily life for people living with HIV. One-third of all countries have virtually no laws protecting their rights. Almost all permit at least some form of discrimination – against women and children who contract the disease, against gay men, against communities at risk.

Stigma remains the single most important barrier to public action. It is the main reason too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so. It helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason the AIDS epidemic continues to devastate societies around the world.8

While there have been many high-level calls for the implementation of policies and programs to reduce HIV stigma, there appears to have only been limited global success in this endeavour. As recently as 2010, the UNAIDS Global Report highlighted the deficiencies in these stigma reduction efforts.

In 2008-2009, the UNAIDS Secretariat commissioned the International HIV/AIDS Alliance to review the national AIDS planning documents of 56 countries to ascertain whether they included programs to increase access to justice and reduce stigma and discrimination (e.g. law reform; know your rights/legal literacy; and human rights training for service providers, provision of legal services, and programs supporting the human rights of women and girls).

This study (published in 2010) found that, although about 90% of country activity plans included stigma and discrimination reduction programmes, fewer than 50% of countries costed or budgeted such programs. Further, the review indicated that countries rarely included a comprehensive package of programs to reduce stigma and discrimination in their national strategies.9

From a woman’s perspective, the lack of programs supporting the human rights of women and girls is disheartening.

In a 2004 study conducted on stigma in HIV positive women, one of the findings indicated that "both perceived and enacted stigma were pervasive in the lives of HIV-positive women … Stigma management largely involved efforts to control information in the service of preserving social relations and maintaining moral identity".10

"The 2008 UNAIDS Global report indicated that ‘an estimated 27% of Americans would prefer not to work closely with a woman living with HIV."11

As Gandhi said: "We must be the change we wish to see."

I therefore urge you all to participate in the online survey on HIV and stigma that is being conducted by NAPWHA and the National Centre in HIV Social Research. This valuable research project aims to be the first step in a program of activities aimed at putting an end to the stigma of HIV.

I finished writing this having just returned from a brilliant concert by Sting and the Sydney Symphony Orchestra in the Opera House forecourt. One of his songs struck me as not only poignant but especially pertinent. The lyrics from Tomorrow We’ll See seem to be particularly apt for us all and sum up the often complex relationship between HIV and stigma...

‘Don't judge me
You could be me in another life
In another set of circumstances’

12

  1. Health Resources and Services Administration, HIV/AIDS Bureau
  2. Bruce G. Link, Mailman School of Public Health, Columbia University; The Stigma Process: Reconceiving the Definition of Stimga (2000), American Public Health Association, 128th Annual Meeting and Exposition.
  3. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward
    Mahajan, Anish P., Sayles, Jennifer N., Patel, Vishal A., Remien, Robert H., Sawires, Sharif R, Ortiz, Daniel J., Szekeres, Greg; Coates, Thomas J; AIDS (Official Journal of the International AIDS Society), Vol. 22, August 2008, pp.S67-S79
  4. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward Mahajan, Anish P., Sayles, Jennifer N., Patel, Vishal A., Remien, Robert H., Sawires, Sharif R, Ortiz, Daniel J., Szekeres, Greg; Coates, Thomas J; AIDS (Official Journal of the International AIDS Society), Vol. 22, August 2008, pp.S67-S79
  5. Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward
    Mahajan, Anish P., Sayles, Jennifer N., Patel, Vishal A., Remien, Robert H., Sawires, Sharif R, Ortiz, Daniel J., Szekeres, Greg; Coates, Thomas J; AIDS (Official Journal of the International AIDS Society), Vol. 22, August 2008, pp.S67-S79
  6. 6.Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward
    Mahajan, Anish P., Sayles, Jennifer N., Patel, Vishal A., Remien, Robert H., Sawires, Sharif R, Ortiz, Daniel J., Szekeres, Greg; Coates, Thomas J; AIDS (Official Journal of the International AIDS Society), Vol. 22, August 2008, pp.S67-S79
  7. http://www.avert.org/hiv-aids-stigma.htm
  8. Ban Ki-moon op-ed (06 August, 2008), The Stigma Factor, The Washington Times http://www.washingtontimes.com/news/2008/aug/06/the-stigma-factor/
  9. UNAIDS Report on the global AIDS epidemic 2010, pp.122-124 http://www.unaids.org/globalreport/Global_report.htm
  10. Stigma in HIV-Positive Women, Margarete Sandelowski, Camille Lambe, and Julie Barroso; Journal of Nursing Scholarship, Vol. 36, Issue 2. pp.122-128, June 2004
  11. UNAIDS Report on the global AIDS epidemic 2008 
  12. From the album by Sting, Brand New Day, (1999)