Stigma

Thursday, November 03, 2005

Stigma associated with Aids doubles the misery of those who are ill

By Susie Clark, senior programme manager at the Aids Consortium, October 30, 2005

South Africa- This week, HIV/Aids experts and activists from throughout southern Africa gathered at a conference in Pretoria to discuss the devastating effects of Aids-related stigma and discrimination and to come up with strategies for combating them.

Bongai Mundeta, director of the Regional Aids Initiative of Southern Africa, which organised the event, stated that "fighting stigma and discrimination is as important as developing medical cures for HIV/ Aids".

Anyone who doubts the truth of her comment need only talk to some of the brave men and women who are living openly with HIV. Many of them will tell you that, worse than living with the disease is living with the discrimination they experience daily.

It is the fear of becoming the victim of such stigma that prevents so many from testing or disclosing, even to their partners and families. Under the cover of such silence, the virus spreads and takes the lives of those who would rather die than reveal their status by seeking treatment and support.

From its earliest days, HIV was stigmatised by its association with marginalised groups such as gay men and sex workers. As it spread to the wider population, HIV has continued to be identified with deviant sexual behaviour, and the real, underlying causes of the epidemic - poverty, inequality and lack of development - have been obscured.

Those who contract the virus are judged and blamed for "choosing" to be "irresponsible". In recent years, the face of the epidemic has become predominantly that of poor, black women who are depicted as the innocent victims of their male partners' promiscuity. Innocent or not, they are still kept at arm's length.

Outward manifestations of the disease - weight loss and skin rashes - only compound the notion that "they" are different from "us".Fear and ignorance about the actual difficulty of transmitting the disease causes communities and families to isolate, exclude and even abandon those carrying the virus.

The availability of anti-retrovirals and awareness-raising campaigns have had some impact on discrimination against people living with HIV and Aids, but it is still with us and continues to cause untold suffering.

Several speakers at this week's conference raised the difficult but necessary question: have some of our HIV/Aids policies and programmes actually perpetuated or even contributed to the problem?

Jason Wessenaar of the University of Pretoria's Centre for the Study of Stigma suggested, for example, that by always casting women as the helpless victims and men as the perpetrators, we have missed opportunities to reach men and involve them as potentially positive role models.

Research conducted by the University of Pretoria found that discriminatory attitudes and actions by healthcare workers had also contributed to the Aids stigma.

In addition, South Africa's social grant system has created a form of reverse discrimination by awarding disability grants to those with HIV while ignoring the plight of the HIV-negative population, who are equally poor and in need of assistance.

Speaking at the conference, Lynde Francis, a prominent Aids activist, said her private name for HIV is "the great revealer".

Instead of viewing the virus as an entirely negative phenomenon, she pointed out that it had opened up dialogue about previously taboo topics and made it possible to tackle issues such as gender inequality, poverty and discrimination against marginalised groups as never before.

In other words, HIV can itself be a vehicle for fighting stigma.There is no silver-bullet solution for eliminating stigma and discrimination against people with HIV and Aids.

What is needed, most speakers agreed, is a multifaceted and holistic approach that involves all of us - from community and religious leaders to legislators to the HIV-positive population to you and me.

Speaking at the conference about her personal experiences with HIV-related stigma, Victoria Bam, an Aids activist from Namibia, said: "HIV and Aids are manageable with ARVs, but to fight stigma and discrimination, there is no medication. It's up to us."

Source: The Sunday Independent