LONGER LIFE: Ongoing Developments of Body Mapping

BACKGROUND - LONG LIFE
In 2002, only 25,000 of the 4.7 million people living with HIV and AIDS in South Africa had access to life-saving medications. Six hundred people were dying of AIDS every day.

In 2002, the Memory Box Project at the University of Cape Town began to run Memory Box workshops in Khayelitsha. “Memory work” is often used with people who have HIV and AIDS, to help them to prepare for their own deaths and also so that they can leave behind a story for their children, who are soon to become orphans.

At the same time, through the efforts of Médecins sans Frontières (MSF) and the Treatment Action Campaign (TAC), some people living with HIV in Khayelitsha were beginning anti-retroviral therapy (ART). In the Memory Box workshops, the facilitators saw that people who were having ART treatment were looking to the future more than to the past. They were more interested in how they could live than in preparing to die.

In the workshops, a large group of people had begun to sketch their life stories and their dreams of being able to live a longer life. They made special handcrafted memory books and boxes for this. A smaller group of them decided to tell their stories about getting treatment and of the hope that treatment brings. They wanted to share their stories with a wider audience, so they created an advocacy book called Long Life: Positive HIV Stories.

Jonathan Morgan was the general director of this project. Jane Solomon developed the body mapping process and facilitated the art-making workshops, which were first used as a way of creating art for the book and for the advocacy campaign. But body mapping soon became the main tool for helping people to tell their life stories. It also helped people to share their feelings, either by sketching things out and painting them, or by putting them into words.

The first fourteen Bambanani Body Maps stand tall, vibrant and proud. They are the first generation which have inspired countless others.

LONGER LIFE – “LIVING WITH X”
Jane Solomon and Jonathan Morgan of REPPSI (Regional Psychosocial Support Initiative) have further developed the Long Life body mapping into what is now called the “Living with X” process.

“Living with X “ is a playful subversion of the term PLWHA (person living with HIV and Aids). There seems to be a subtle, often unnamed, pressure for people living with HIV and AIDS, to attach considerable weight to this particular aspect of their identity, in a way that is less pronounced or even absent, for instance, around people living with cancer or diabetes.

The “Living with X” body mapping process allows participants living with HIV the opportunity to question why HIV and AIDS should be seen as more important than other illnesses when it comes their identity and, with group support, to rediscover and celebrate other parts of themselves. The X in (PLWX) could then stand for “HIV” or it could, for example, stand for “love and great courage” or “a warm heart and the power to assist others.” Additional psychosocial support exercises have been added to make the process safer.

“Living with X “ was first facilitated by Solomon and Morgan, in collaboration with Tricia Smith from CATIE (Canadian Aids Treatment Information Exchange) in a body-mapping workshop held in Dar es Salaam, Tanzania, with a group of ten women living with HIV, in October 2006.

A further body-mapping workshop was facilitated by Solomon and Smith in Lusaka, Zambia, with a widows support group of nine women living with HIV and two caregivers, in March 2007.

Most recently Solomon and Smith facilitated two body-mapping workshops in Toronto, Canada, the first with ten African/Caribbean women and the second with a group of seven men, many of them long-term survivors. A ‘train the trainer’ workshop was also held in Toronto with HIV/Aids treatment counsellors and artists from across Canada to introduce them to the “Living with X” process.

CATIE plans to exhibit all 30 body maps created by women living with HIV in the Dar es Salaam, Lusaka and Toronto workshops. It is also planned that the Dar es Salaam and Lusaka body maps will be exhibited in the cities where they were created in early 2008.

The “Living with X” body mapping facilitator’s manual, written by Jane Solomon with psychosocial input by Jonathan Morgan and produced by REPSSI as part of its psychosocial wellbeing series, will assist facilitators and artists nationally and internationally to make use of this process. The manual will be available online and through REPSSI .The manual is illustrated with photographs taken during the Dar es Salaam workshop.

The tracing book, Patient Held File, was developed by Jonathan Morgan and Anya Subotzky in discussion/collaboration with medical doctors. The tracing book works as a journal wherein people living with HIV create scaled-down body maps (A4 size) on a daily/weekly basis to track wellness and illness. This bio-medical, psychosocial tool assists with patient empowerment and control over illness, treatment, adherence and disclosure. It also assists patients/clients to communicate with doctors. A facilitator’s guide of the tracing book process is currently being written and will form part of REPPSI’s psychosocial wellbeing series.

The possibility exists for Solomon to train South African HIV/AIDS counsellors working alongside an artist in the process. If this is something that you or your organisation would be potentially interested in please email Jane Solomon at: jasolomon@absamail.co.za

The Tanzanian bodymaps, which are currently on display in the Idea Gallery at the Ontario Science Center, can be viewed at http://www.catie.ca/bodymaps/gallery.shtml

For a further look at the body mapping process including video footage from workshops in Tanzania and Zambia and an interview with Tricia Smith (CATIE) go to http://www.youtube.com/watch?v=vGA44wYxeAw&feature=related

Further information:
Jane Solomon is a freelance designer and skills trainer. Her work includes the design of processes, learning materials and textiles and the facilitation of art making workshops where participants use creativity as a tool for both income- generation and self-empowerment.

Jonathan Morgan is a clinical psychologist and REPSSI’s Knowledge Development manager, and is responsible for the psychosocial aspects of “Living with X”

Tricia Smith is the Treatment Information Manager at CATIE and project coordinator of the CATIE/REPSSI body-mapping project.

REPSSI (Regional Psychosocial Support Initiative) is a regional capacity-building organization working in thirteen countries with over 100 partner organizations in East and Southern Africa. REPSSI’s aim is to enhance the psychosocial wellbeing of children, families and communities affected by HIV/AIDS, poverty and conflict.

CATIE (Canadian AIDS Treatment Information Exchange) is a Canadian national not-for-profit organization committed to improving the health and quality of life of all people living with HIV/AIDS in Canada. CATIE serves people living with HIV/AIDS and the people and organizations that support them by providing accessible, accurate, unbiased and timely treatment information. CATIE works in partnership with a network of other information providers to ensure that people have access to the information they need, in the form they desire, to make informed health-care choices.

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