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aidsfocus.ch e-Bulletin 08.02.2005

aidsfocus.ch e-Bulletin 08.02.2005
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Feb 08, 2005

ELECTORNIC BULLETIN OF THE SWISS PLATFORM ON HIV/AIDS AND INTERNATIONAL COOPERATION

MEMORY BOX PROGRAMME: FAIRE MÉMOIRE AU TEMPS DU SIDA

L'expérience des boîtes de la mémoire dans la province du KwaZulu-Natal en Afrique du Sud. De septembre 2000 à janvier 2002, Philippe Denis et Nokhaya Makiwane ont rendu visite à vingt familles sélectionnées par Sinosizo Home-Based Care, un service de soins à domicile pour malades du sida créé par l'archidiocèse catholique de Durban. La mission première de Sinosizo était de prendre soin des malades du sida mais les responsables du service ne tardèrent pas à prendre conscience de la nécessité de prendre également soin des enfants des malades. De là l'idée d'expérimenter à Durban un modèle nouveau d'intervention appelée "boîtes de la mémoire" en référence à un projet semblable créé en 1997 en Ouganda par NACWOLA, une association de femmes vivant avec le VIH et le sida.

Le terme "boîte de la mémoire" doit être compris comme une métaphore : c'est une méthode permettant à l'enfant privé de ses parents ou qui le sera bientôt de conserver la mémoire de ceux-ci d'une manière qui lui permettra de "grandir malgré tout". Mais c'est aussi un objet : une boîte en fer ou en carton où sont conservés des photos, des documents d'identité, des objets appartenant aux membres de la famille disparus et, bien sûr, la brochure contentant le texte de l'interview. Le propos de cet article est de présenter -très brièvement vu les contraintes d'espace- quelques-uns des présupposés théoriques qui sous-tendent le travail du Memory Box Project.

http://www.ssd.u-bordeaux2.fr


MAPPING WORKSHOP MANUAL: FINDING YOUR WAY THROUGH LIFE, SOCIETY AND HIV

The manual summarizes the main “intervention tools” used by a group of peer educators know as the A-team in the AIDS and Society Research Unit (ASRU), Capetown University, South Africa: Journey mapping, body mapping, memory books, disclosure and social maps.

Some of the tools draw from the tradition of memory work: Memory books and boxes that help HIV positive mothers to disclose their positive status to their children, as well as to begin the process of future planning together. Moreover, as anti-retroviral treatment becomes increasibly available, the Mapping our Lives initiative in ASRU helps people in HIV-positive support groups grapple with the social constraints and possibilities which shape their lives. The various mapping exercises are designed to encourage critical reflection, promote understanding and lead to new insights about living positively.

The tools have been developed within the Memory Box Project of ASRU and are constantly being updated. Feedback from others using these tools are welcome. Published by ASRU, Centre for Social Science Research, University of Capetown, March 2004

http://www.cssr.uct.ac.za

http://www.aidsfocus.ch


TREATMENT COMBINDED WITH MEMORY WORK

Contradition in terms or why not? An article by Jonathan Morgan, Coordinator of the 10MMP. In HIV and AIDS contexts, and in an era where ARVs and life saving and life prolonging pharmaceutical treatment have not been available to all who need them, memory work has evolved, more than anything else, as a preparation for death. There is little doubt that classical memory work, that is, memory work as legacy and memory work as succession planning, fits best and is most poignant in the face of death and dying. What needs questioning however, is the often unspoken assumptions that memory work applies only where there is no treatment and where premature death is inevitable, and that if it is not classical memory work, it is not memory work.

http://www.aidsfocus.ch


CHILDREN IN THE TIME OF AIDS

This special edition of the AIDS Bulletin focuses on the psychosocial needs of children within the context of the AIDS pandemic and on memory work. Memory work is an innovative model of psychosocial support geared towards developing resilience among children, which has been adopted and adapted by various organisations working with children in the context of HIV/AIDS. This work has now been brought together by REPSSI under the umbrella of the Ten Million Memories Project.

The history and motivation for the initiation of the Ten Million Memories Project is elaborated in detail by both Stefan Germann and Jonathan Morgan. Some of the various ways in such memory work has been fast evolving, is described here by authors who have all been integrally involved in its development. Philippe Denis of the University of KwaZulu-Natal, Jonathan Morgan of the University of Cape town, Juliet Carter of the South Coast Hospice and Carol Lindsay Smith - who brought memory work from the United Kingdom to Uganda, the first place in Africa where mothers began to use memory books as a tool for disclosing their HIV-positive status to their children. The empirical research that exists on the psychosocial needs of children seldom accesses the expertise of practitioners working in the field. (AIDS Bulletin June/ July 2004)

http://www.mrc.ac.za


MEMORY WORK: BODY MAPS

Body Maps are large life-sized paintings containing representations of the virus, symbols of personlal power and illustrations of the important marks left by life. Team members take their own body maps to talk about their experience of illness, treatment, and disclosure.

http://www.cssr.uct.ac.za

http://www.aidsfocus.ch


THE INTERNATIONAL MEMORY PROJECT

The Uganda based National Community of Women Living with HIV/AIDS (NACWOLA), initiated the Memory project in 1997. Since then it has been used in Uganda and Kenya to support mothers wanting to disclose their HIV status to their children and encourage them to prepare for their future with their children. This has opened up communication between parents and children in a culture that typically remains silent and distrustful over the AIDS epidemic.

A unique, innovative project: The Memory Project trainers, often HIV-positive themselves, run workshops and work directly with women and children. Their sensitive approach works on many levels, with individuals, families and whole communities. Encouraging parents and children to communicate in a supportive environment helps to dispel the stigma and discrimination associated with an HIV-positive status. When parents disclose their status to their children, they can help them to prepare for a more secure future. One example of how the project works is through the use of Memory Books. These books help parents to discuss significant changes in family circumstances, including bereavement and grief, with their children. The books, prepared by parents with their children typically include photos, family stories and souvenirs. They provide children with a much-needed sense of identity and source of family knowledge.

http://www.healthlink.org.uk


MEMORY BOX TRAINER’S MANUAL

The overall objective of the Memory Box Programme, Sinomlando Project (University of Natal, South Africa), is to enhance resilience in vulnerable children and orphans affected by HIV/AIDS through the methodology of the memory boxes. The memories of a family are kept in a memory box which contains the story of the deceased parents as well as various objects pertaining to their history.

Two types of interventions: 1) Family visits: the programme’s ‘memory facilitators’ encourage the sick parents or the caregivers to tell the history of the family in the presences of their children as a way of facilitating the bereavements process of these children. The methodology of oral history is used.

2) Children’s groups: Basic play therapy techniques are used. Special emphasis is laid on life stories, family trees and bereavement narratives. During the sessions the children create memory boxes which they fill with various artefacts.

http://www.hs.unp.ac.za


MEMORY BOX PROJECT, ASRU

The Memory Box Project is a programme of the Aids and Social Research Unit (ASRU), Cape Town University that helps HIV positive people come to terms with their diagnosis, communicate with their families, and prepare for the future. It also provides a focal point for educational and awareness-raising work on HIV/AIDS. The vision is to help HIV positive people whilst creating a non-exploitative interface between those living with HIV/AIDS and researchers trying to ascertain the social and personal impact of the pandemic. Jonathan Morgan is Director of the Memory Box Project.

Memory Box staff have begun a collaborative project with Medicines Sans Frontieres in which memory boxes and books are used as qualitative research tools to document the stories of HIV positive people now receiving anti-retroviral medication. The Project also started training a core team of HIV positive community-based trainers, referred to as the A-team. The Memory Box Project aims to continue linking outreach activities with research and advocacy in this way. ASRU has produced several working papers, a Memory Box Manual and a photo essay of the body maps, available online.

http://www.cssr.uct.ac.za


"I DIE, BUT THE MEMORY LIVES ON"

The new book by Henning Mankell on Memory Work: I Die, but the Memory Lives on: the World Aids Crisis and the Memory Book Project (or, A Personal Reflection on Aids)

I Die, but the Memory Lives on is an angry book. Its author, the highly successful Swedish crime fiction writer Henning Mankell, would appear to have good reason to be angry. Mankell lives in Mozambique, where for many years he has been running the national theatre there. Mankell also campaigns for Aids awareness. In particular, he is involved with the Memory Books project, which tries to encourage parents with Aids to write something of themselves down, for when their children have grown up. I Die is a book about Mankell's experiences with Aids and Memory Books in Africa, where Aids has hit people the hardest. That is to say, it's killing them. Millions of people are dead or dying.

Translated from Swedish by Laurie Thompson Published by The Harvill Press, London, 2004

http://www.randomhouse.co.uk


BREAKING THE SILENCE: MEMORY BOOKS AND SUCCESSION PLANNING

The experience of NACWOLA and Save the Children UK in Uganda. This booklet documents the experiences of the past years’ work, in order to bring out lessons for the future. At NACWOLA, where the Memory Book ideas first took root in Uganda, it soon became clear that making a Memory Book could encourage parents to disclose their HIV status to their children and/or to the wider community. It opened up channels of general communication between parents and children, and so improved their relationship. It ensured that children understand their family’s traditions and beliefs and give parents an opportunity to state their hopes and advice for the future. The child’s knowledge of HIV/AIDS and on prevention was increased. Memory work helped to raise awareness in the community and decrease stigma for people living with HIV/AIDS.

http://www.savethechildren.org.uk


“… AND ONE CAN DARE TO HOPE AND DARE TO REMEMBER”

Memory Work: Coping Strategies in the Face of AIDS Conference 2005, April 12, 2005, Berne Memory books, memory boxes or body maps help people living with HIV/AIDS to put words and images to feelings, thoughts, and experiences. Memory books help parents to cope with disease, death and grief, to communicate with their children and to give them a sense of identity and belonging. Like a treasure chest, a memory box may be a child’s greatest source of comfort. In the context of antiretroviral treatment, memory work is used to fight for life and to live positively. By enabling people to share their life stories with others, memory work generates courage and hope for the future.

This year’s conference of aidsfocus.ch focuses on memory work, an innovate approach of psychosocial support of children and adults affected by HIV/AIDS. The documentary film “Strength from Remembering“ leads us into the world of memory work. Resource persons from Africa will share their experiences and reflections of working with people living with HIV/AIDS. Options of integration of memory work in programmes of development cooperation will be highlighted and discussed.

Program

Memory Work – Concept and experiences - “Strength from remembering”. Film by aidsfocus.ch, realized by René Schraner and Eva Hänger - Annet Biryetega, National Coordinator for the National Community of Women Living with HIV/AIDS (NACWOLA), Uganda: Memory Books – Ways to cope with the future. Experiences from Uganda - Jonathan Morgan, former Director of the Memory Work Project, Capetown University, Coordinator of the 10MMP, South Africa: Memory Work – Providing a space to share and dare to remember. Concepts and experiences in various settings - Noreen Huni, Executive Director of the Regional Psychosocial Support Initiative For Children Affected by HIV/AIDS (REPSSI), Zimbabwe: Enhancing psychosocial support of children affected by HIV/AIDS - Creating a memory book

Reflection and draft for action: Working Groups on the Implementation of memory work in programmes A. Working with children affected by HIV/AIDS: Memory boxes, hero books B. Working with parents living with HIV/AIDS: Life and Memory books C. Working with people in treatment: Body maps, memory books, etc. D. Mainstreaming Memory Work into existing HIV/AIDS programs

We invite partners of aidsfocus.ch and representatives of Swiss non-governmental organisations working in International cooperation as well as of any other interested institution. The Conference will be conducted in English.

Further information:

http://www.aidsfocus.ch


"STRENGTH FROM REMEMBERING" - NEW FILM BY AIDSFOCUS.CH

"Strength from Remembering" documents different forms of memory work developed to support children, women and men affected by AIDS. It describes the lives of Babalwa (29) and Bulelwa (36), two women who live separated from their families in the township of Kayelitsha in South Africa. The diagnosis of "HIV-positive" was a drastic turning point in their lives. Memory work and treatment with antiretroviral drugs have helped them find new strength to go on living.

Using expressive and sensitive images, the film conveys a range of memory work methods and their local variants. The images are intended by René Schraner and Eva Hänger as visible parallels to the methods of memory work. And provides a space for people to experess themselves:

"I think, memory work made me strong, because before I joined, I was not free to talk about my status.” (Bulelwa Nowke, 36)

“When I remember my mother I open the box. And I’m sad because my mother died – and happy because I have her things.” (Mawahkhe, 11 years)

Camera: René Schraner Sound: Eva Hänger Music: Lukas Rohner In close collaboration with the Working Group "Children affected by HIV/AIDS" of aidsfocus.ch

A DVD à Fr. 40.- contains two versions of the film: „Strength from Remembering“ - Memory Work with people affected by HIV/AIDS in South Africa. 50 minutes, English spoken „Strength from Remembering“ – Three approaches of Memory Work: Memory Boxes, Memory Books and Body Maps. 15 minutes, English spoken

The DVD will be available by February 7, 2005, from:

aidsfocus.ch c/o Medicus Mundi Switzerland Murbacherstrasse 34 P.O. Box 4013 Basel

info@aidsfocus.ch

http://www.aidsfocus.ch


12.04.2005 | AIDSFOCUS CONFERENCE

Berne | Memory Work and psychosocial support of children und people affected by HIV/Aids is the topic of the aidsfocus conference 2005. Programme and further informations will follow in January 2005.

Please note the date!

http://www.aidsfocus.ch