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Publish Your Life

By Jonathan Morgan

It is estimated that over 20 percent of South Africans between the ages of 15-49 are HIV positive. As yet, only some 78,000 of these approximately 6 million people are believed to have access to life-saving medications under a government program launched in 2003.

Memory boxes, along with memory books, hero books and body maps, are a particular kind of memory work/psychosocial support tool that have evolved in response to the extraordinary range of challenges facing so many people.

Memory work might be defined as the deliberate setting up of a safe space in which to contain the telling of a life story. Its scope is not restricted to the past. Its purpose is often to deal with difficulties in the present, to hold on to and to celebrate life, and its orientation is often toward the future.

Memory Box work was pioneered in Uganda by HIV-positive women who are making sure that they leave their children intimate reminders of their lives by creating memory books and memory boxes.

Each memory box provides 12 surfaces onto which one can stick photocopies of photos, text or original art. Absolutely anything can be put into the books and boxes. This exploration of one's personal history, shaping this into gifts for the future, can restore a sense of continuance and tap deep sources of hope.

My efforts to explore this sparsely documented work with a group of HIV-positive women in Soweto led to the setting up of the Memory Box Project at the University of Cape Town in 2001. Our mission was to use memory boxes as a therapeutic intervention to assist people living with HIV/AIDS to tell their life stories in transformative ways and, in doing so, to advocate for treatment.

A Different Story

Tremendous stigma surrounds HIV and AIDS in South Africa. Many of the women we met in our groups had not disclosed their HIV status to their male partners who infected them in the first place. Many women who disclose their status risk rejection, eviction and, in some cases, murder. Because of extremely limited treatment opportunities, there is little incentive for HIV positive people to go public with their status. Often this silence contributes to secrecy, shame, guilt, anger and, inevitably, further spread of the virus.

The first group we ran was at a Red Cross structure made out of tin sheets in an area called Khayelitsha, one of the so-called townships of Cape Town. In this small room were about 40 women, many of whom had crying babies. Some of the women had just heard about their own HIV status, and others had just learned that their children were HIV positive. Others were still waiting to have their children tested for HIV. There was a general expectation of death. At the time, there was limited access to effective treatment. The situation was dire. Across South Africa it continues to be so. Extensive lobbying is increasing access to antiretroviral drugs. But still, every day in South Africa 600 people die of AIDS, which has created over 1 million orphans.

Initially, our work was informed by the assumption: You have HIV/AIDS (conflating the two), you are going to die, get down your story. An important shift happened when we began focusing on the fact that HIV need not necessarily be a death sentence. We began to talk about memory boxes and books as tools to help people fight for and celebrate life rather than to prepare for death.

Making a memory box is an opportunity for people to tell the life stories they wish to. This can be a story of hope and activism challenging limited access to life-saving and -prolonging medication. It can be about living with HIV and still living a healthy and positive life, or it can be a story about talking about pain and loss and death.

Recognizing Expertise

In our work, we were always clear that what HIV-affected communities needed even more than condoms or counseling or awareness-raising, etc., was money, jobs, hope and a sense of future. We also knew it was not within our means or expertise to provide all these things.

Body maps, developed by artist Jane Solomon, are body tracings onto which people mark where actual wounds/marks/held feelings have recorded their stories

Then, as demand for workshops and talks began to outstrip our capacity to deliver them, we realized that what we needed was a squad of helpers, an "A team" who could work on many different fronts. When we thought about what would most qualify this team to do the work required of them, it was that they should be Xhosa-speaking and HIV positive. Rather than recruiting our clients into yet another bead or craft enterprise, individuals here were being asked to work from their real area of expertise--their insider knowledge and experience as HIV-positive people and their fluency in the language that is spoken in their communities. Victoria emerged as the natural leader of the team.

In the training, we endeavored to offer the capacity to deliver a range of services: memory box workshops, group therapy skills, pre- and post-test counseling, support group facilitation, prevention work, research skills. We also focused on developing business skills, enabling collectives to manage their own finances and to compete and survive in the marketplace. From a memory box manual, participants learned how to make a box and a book out of recycled material. Facilitators learned how to fill the book using prompts similar to those used in the Ugandan model. "Our family values and traditions are . . ." and "My hope is that you will . . ." are but two examples.

Confronting Fear

One of the tasks of the facilitators is to create a safe space in which participants can support each other in each other's journeys through the fears and anxieties of their situation, toward a place of empowerment and hope. As part of their work, with their own memory boxes in front of them, members of the A team will stand up in front of a crowd of people who have not yet been tested, for various reasons that usually include fear. The A team will say: "Look at us, we are HIV positive but we are working. I expect to live longer than you because I know my status. Even if you are HIV negative but do not know it, the chances are that you are not practicing safe sex and will become positive soon."

Nomonde tells how she found out her status when she became pregnant and how she was given the drug AZT to prevent transmitting the virus to her baby.

Nondumiso tells how she nearly died but was brought back from death's door by an antiretroviral treatment provided by an international NGO.

People are literally moved to test. In the days following such workshops, the A team receives phone calls telling them, "I was in your workshop and I decided to go for a test." If someone is lucky enough to test negative, they have something very valuable to protect. And if the results are positive, this knowledge can be directed toward empowerment and action.

Five years after the first workshop, the A team are now a coherent, quite famous and much-in-demand group of women whose main business, niche market and expertise have evolved around the considerable research skills they have developed working for the Aids and Society Research Unit at the University of Cape Town.

New Beginnings

Memory box experience often begins as a very private and introspective journey but, along the way, spontaneously develops into a more public performance of what promises to be a liberating account of one's life. The first step in this direction happens within a safe space where participants share their lives with considerate, understanding and caring others. The ceremonies that surround the work--group discussion, small exhibitions, larger installations--can become powerful rituals enabling HIV-affected individuals to step into preferred identities of self which are more difficult to bring forth in society at large. Many people have also told me that they have used their memory boxes and books to disclose their HIV status to others for the first time.

My personal experience with memory work over the past few years has likewise been a process of growth, development and adventure--one that has taken me to several countries and exposed me to diverse situations and experiences. I am currently involved with the Ten Million Memory Project (10MMP), a platform for collaboration around memory and hero work that aims to reach 10 million children across Africa.

Memory work of this sort is, amongst other things, a stage on which people's stories can be heard and told. It helps ensure that the lives and struggles of people bravely facing difficulties are recognized, recorded and disseminated. In regard to HIV and AIDS, through their stories they are documenting the pandemic and advocating, in powerfully personal ways, for treatment and care.

[ Related stories: Hero Books / Victoria's Story ]

Jonathan Morgan works for REPSSI, a regional initiative for the psychosocial well-being of children affected by HIV and AIDS, poverty and conflict in 13 African countries. He is also the coordinator of the Ten Million Memory Project, which seeks funding to reach 10 million children by 2010. Contact jonathan@10mmp.org

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