ISIBONISO - ? sharing the experience of HIV and AIDS

In the community of Klaarwater, near Mariannhill in KwaZulu-Natal, a dedicated group of women have joined their friend and mentor, Ann Prince, to activate a communal response to the HIV/AIDS epidemic by establishing a local drop-in counselling and referral centre called "ISIBONISO".

When Ann was diagnosed as HIV-positive in 1995, her doctor told her that, with her CD4 count of 67, she would have only weeks to live, but she faced her diagnosis with courage and faith, surviving to disclose her status a year and seven months later.

After attending a number of workshops and clinic meetings involving other PLWHAs, Ann was inspired to share her experience and knowledge around the disease so as to mobilise a local community project that would help to reduce the stigma and suffering of those affected by the epidemic.

She networked with others around her vision, and finally, eight women volunteered to team up in offering advice around positive living as a means of surviving HIV/AIDS and other health problems in the Klaarwater area, which covers at least five discrete communities.

" I started taking anti-retroviral drugs in 2001," explains Ann, "but the side-effects made me feel so ill that I stopped taking them the following year. Through eating well, getting rest and focusing on being healthy at all levels, I've managed without drugs and my most recent CD4 count was 787." She believes that only through living honestly and positively, which involves disclosing one?s status, taking charge of one's own wellness, and focusing on self-belief, can one control the effects of the virus. "I'm living proof that it's possible to achieve this," she says, "and I'd like to show others that they can do it too."

The group, consisting of Ann, her sister Nosibusiso, Nana Ngobese, Thuli Zimu, Nomusa Masango, Connie Mthabela, and Khanyisile Nkosi, started working on the idea in 2002, and opened an office on 15 August 2003 - but no one has come forward yet, despite there being many community residents who are suffering in silence, alone at home. "We've spoken to the clinic sister, who will be making referrals to us; also, we will be raising funds to make posters, flyers and T-shirts so as to brand and publicise the Centre, and to collect more printed resource materials for hand-out." explains Nana.

Funds will also be needed to hire a full-day receptionist and a cleaner, and at this stage there is no access to water, electricity, toilet facilities or a phone-line. However, the group members and any other prospective volunteers will sign agreements to confirm that their work is unpaid.

The advice centre is located in a shop space belonging to Ann's mother in a small, central building which is largely vacant due to constant burglaries. The group hopes to rent the adjoining shop for private counselling by five of the members, two of whom were trained by St Mary's Hospital in pre- and post-test as well as ongoing counselling. The group has also had workshop training around HIV/AIDS and the law, legal basics and human rights (specifically to privacy, dignity and confidentiality) from Natal University's Centre for Socio-Legal Studies.

"We won't launch the Centre officially until we have liaised with our local Community Health Forum representative," says Nana. "We also intend broadening the service to include advice on cancer, diabetes and TB, so that there's less intense focus on it being an HIV/AIDS support centre. This should help to decrease stigma problems." The hours of operation will be from 9 a.m. to 4 p.m.

Sister Gumbi, from the local health clinic, can only help on an ad hoc basis when called upon, but has agreed to support the project as much as she can. "This group initiated and owns this project, and it should proceed as such,"she observes. "ISIBONISO" was named after Ann's son, because it was her original concept. It means "I will show you" and with her resilience and dedication, Ann is an ideal role-model.

"I've always been a realist, someone who deals with facts, obstacles and the truth head-on - then I can prioritise my responses. I believe in spiritual support, and that telling and showing people that they CAN survive is very powerful."

Ann's self-confidence has protected her from some exploitative experiences. "Once, the organisers of a community beauty pageant demanded that I disclose and discuss my status at the event, but I insisted on being paid a fee for that kind of presentation," she says. "There are also those who do not believe that I am HIV-positive, because I look so healthy!"

If you need ISIBONISO's advice, please contact any of the following:

Ann Prince: 082 816 1873 (Counselling and Strength)

Nomusa Masango: 083 615 3600 (Spiritual Counselling)

Nosibusiso Prince: 083 953 0380 (Pre- and Post-test Counselling)

or if you can assist the volunteers in any way, please contact any of the following:

Nana Ngobese: 083 759 8754 or Email: [email protected]

Connie Mthabela: 083 278 0033

Khanyisile Nkosi: 072 222 8613

<