Memory work helps women strengthen communication with their children and other family members; Photo: Georgina Cranston/Healthlink Worldwide
A memory book is a written and illustrated record of family and individual history, important facts, memories, hopes and messages. It can be written by parents or guardians, with or for their children, or by children themselves.
Fudasia Kishe from Kiwakkuki (Woman against AIDS in Kilimanjaro) speaks of how it makes a difference to women and families affected by HIV and AIDS in Tanzania.
Kiwakkuki is an HIV and AIDS prevention and care organisation. We do things such as home-based care, orphan support, psychosocial support, voluntary counselling and testing. We work primarily with women and young people in the northern Kilimanjaro region. We got involved in memory work in 2004 and it is now one of our main ways to support families affected by AIDS.
It is a different kind of approach because it deals with the realities of HIV and AIDS today. We know that many women are living with HIV and do not know their status, or if they do know and are HIV-positive, do not have access to anti-retroviral drugs. They will die of AIDS and leave behind families and children, often very young children. Without any kind of support these children are very vulnerable. They are bereaved, deprived of their inheritance rights, and left in the care of guardians who are also finding it difficult to cope.
Memory work is like a tree that allows children to discover their roots and it encourages both parents and children to deal with their loss. It enables parents to talk to their children, write wills and leave behind a record of family history, anecdotes and stories, memories and agreed plans for the future. Children are able to choose who their guardians will be and, if wills are written, also receive the inheritance they are due.
Memory books are a way for women to document family history and values Photo: Georgina Cranston/Healthlink Worldwide
Women are starting to register births to make sure their children have legal standing when they want to claim their rights. In Tanzania, 600 adults and 240 children actively participate in memory work at the moment. We are working hard to support children to get birth certificates in collaboration with a legal organisation called Kilimanjaro Women Information Exchange Consultant Organisation (KWIECO). There have been 180 birth registrations and 288 more are being processed. KWIECO have also completed and referred 160 wills.
Memory work means that children are able to advocate for their rights and win. Grace is one of five children living in a child-headed household in Moshi town. Grace attended training about memory work and used the knowledge she gained to claim her rights to the property her parents left behind when they died of AIDS. Community leaders offered her their support and she managed to turn the informal will written by her father into a legal document. In 2007, some relatives arrived with a big lorry to take their possessions and sell their house. But because of the legal document, they were unable to take anything.
Kiwakkuki is also keen to involve religious and community leaders. We went to churches and mosques and got the support of religious leaders. These leaders told people it is important to write a will and that the community should care about people living with HIV. It has an impact. People listen to them. In the broader community there is now a deeper understanding about HIV and AIDS.
Memory work is not a direct approach to stop the spread of HIV and AIDS, but indirectly we think that it does make a difference. It increases people’s knowledge about HIV, how it is transmitted, where you can get a test and whether you are able to access treatment or not. The most important change we saw take place in the communities is that there is less stigma about HIV and AIDS. People are not as secretive and children and adults communicate in much better ways. Women disclose their HIV status to children and together they write memory books and talk about the future.
You might think that with ARVs, we do not need memory work anymore. But memory work is still important because only one third of people in need of ARVs can access them. In Tanzania, the rate of access to ARVs is not increasing rapidly and too many people are dying, leaving behind children and families. When parents are on ARVs or are taking treatment for opportunistic infections, children are able to support them through the memory work approach. And a friendlier community environment around HIV will lead to more people being tested, and becoming empowered to demand their right to ARVs.
We still have work to do to involve policy makers in memory work at the national level, to convince them that it should be part of the national strategic plan. We are encouraged by the experience of the National Community of Women Living with HIV and AIDS in Uganda where the memory work first started in 2000. The approach has been so successful that the National AIDS Council in Uganda has incorporated the approach into its national priority action plan. We are working to see that happen here in Tanzania.
Fudasia Kishe is the National Coordinator for memory work in Tanzania.
Contact: fudasia.kishe@gmail.com
www.kiwakkuki.org
About Memory work:
Introduced in 2000 in Uganda, memory work is now critically important in the fight against HIV and AIDS at community level in several African countries. Since 2000 nearly 11,000 people in five countries – Uganda, Ethiopia, Kenya, Tanzania and Zimbabwe – have been involved in memory work activities and over 2,000 children, parents, guardians, carers and community volunteers have been trained in memory work approaches. In 2003, Healthlink Worldwide and six partner organisations – Tilla Association of Women Living with HIV and AIDS, Ethiopia; Hiwot HIV/AIDS Prevention, Ethiopia; The Kenya AIDS NGOs Consortium; Kiwakkuki, Tanzania and Family AIDS Caring Trust, Zimbabwe – launched the International Memory Project supported by Comic Relief in the UK between 2004-2008. Comic Relief also funded an additional year in 2009 and partners are planning how to continue memory work in the future.
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What do you think about memory work? Should it form part of national HIV and AIDS strategic plans?
Filed under: Stories | Tagged: AIDS, memory work
