Sometimes someone says just one thing that changes everything right there and then. For me it was Lucy Conell who is a doctor at the HIV/AIDS Research unit at Baragwanath Hospital here in Johannesburg. She said, "Have you heard about the Memory Box Project in Uganda?"
Three weeks before Lucy told me about the Memory Box project, I had become involved with the work of ACCT (AIDS Counselling, Care and Training) an organisation in Soweto made up of HIV infected and affected individuals. They strive to honour and foster their own insider as opposed to outsider expert knowledges, their own courage, survival skills, and support networks in the face of HIV. I had been approached to train members of ACCT in narrative therapy, which is my preferred way of working. Full of ignorance, prejudice and misinformation around HIV and AIDS, I remember feeling considerable reluctance to get involved but I agreed to meet up with Glen Mabuza to talk it through.
On a guided tour of an old and neglected building tucked behind Baragwanath Hospital, which serves as the base for ACCT, Glen told me again that the organisation is made up of both HIV infected and affected individuals, affected referring to all those with close personal ties to an infected person. When she introduced me to a group of women making beaded AIDS ribbons, I was greeted warmly but I couldn't help but think, "I wonder who is positive and who is negative? Everyone looks so healthy and so alive."
After a second visit, still feeling very uncomfortable, at lunch time I sat down with Glen over a plate of Nandos and I asked her, "What are the chances of a helping professional getting infected during the course of his/her work?" I felt terrible asking the question but I told myself I was asking it for the sake of my children. Glen reassured me it was a good thing to ask. She then told me that the chance was zero, unless of course the infected person pours 25 litres of saliva into the other's open wound, or the two of them somehow find a way to mix their blood inside the uninfected person's body.
The next week I was asked to attend a support group for women with infants at the ante-natal unit. I knew Lucy worked down the passage and went to look for her. We chatted and I told her I might be interested in putting together a book about HIV that juxtaposed descriptions that were very microscopic-medical-biological, with others that were very macro-global-epidemiological, and others that were completely personal and human, stories like those of Gugu Dlamini who was murdered in Kwazulu Natal in 1998 when she publicly disclosed her HIV positive status. It was then that Lucy asked whether I'd heard about the Memory Box project.
While she photocopied a one page abstract about it, I waited in a room filled with crying babies and their mothers. Researchers in white coats with many layers of thick latex gloves kept coming into the room and depositing test-tubed blood samples into a huge fridge. Filled with a combination of nausea, life shock and destiny, 'Memory Box Memory Box Memory…' kept resounding in my head and I saw my own life in slow motion. Documenting one's life in a box sounded so very neat and funky. I also realised the possibility of changing my life course and of combining so many of my own interests. History taking and making, working with my hands, therapy, writing, to name but a few. The concept also fitted with my own belief that art is more likely to prompt therapy and healing than just talking, especially talking down, full of judgement, interpretation and analysis.
In the group session that followed, as the so-called expert, Irealised I knew almost nothing about HIV. I left the unit with the one page photocopy, a resolve to educate myself and to give up my private practice.
On the one page photocopy was a photograph of a braided Ugandan women with a Mona Lisa smile under which it said 'Taking time to write and reflect'. I read on about how positive women in Uganda are making sure that they leave their children intimate reminders of their lives by creating memory books and memory boxes. I also read that unless children with positive parents have been well prepared, provided with detailed information about themselves and their origins, there is a severe risk that fear, confusion, and most of all loss of identity will increase their grief. I read about how inviting these children to participate in planning their own futures, as far as this is possible, creates a solid foundation for their development and their careers.
The following week I asked one group of positive women at ACCT whether they would like to begin such a project. They all said yes.
The very first box to be completed was Maki Lufhugu's. Maki passed away on the 27 April 2000. Finishing touches to her memory box and its contents were made by other members of ACCT. The box was handed to her two children and other family members at a memorial service held for her on 11 May 2000. In her box are her skaf-tin (lunch box), her life story written in her own handwriting, her favourite hat, a memory book full of her certificates, photos, press clippings describing her heroic public disclosure of her HIV status in 1984, as well as other artifacts. It was Maki's expressed wish that her life story be publicised.
Just before the July Durban AIDS conference, to which we were invited to present our work, we completed our first series of Memory Box workshops. Some of the boxes were exhibited at the conference and made the 8pm National News. Others are currently on display at the Urban Futures Healing exhibit in Johannesburg. This is how we make and fill our boxes.
It seems that the act of focusing special attention on the containers for the memories represents an opportunity to protect, make space for, and attach value to the processes of story telling and art therapy. In Beatrice Were's (the person behind the Uganda Memory project) article, she writes, "a memory box can be whatever you have handy." Right here we deviated a lot. While we thought a lot about using old suitcases, hat boxes, trunks, whatever you like, we have found that we really love recycling used cardbox boxes. Each box provides 12 surfaces onto which one can stick (decoparge) photostats of photos, text or original art. Once varnished, the boxes are virtually waterproof and are really very sturdy. We were fortunate enough to have a photocopy machine at ACCT and we really use it to the full.
For our next series, a train the trainer series held in Winterveldt, one of South Africa's largest informal settlements, where we did not have such easy access to a photocopy machine, the 28 books and boxes that were made were for me in some way more expressive. Photos tell a story pretty much from the outside in and drawings from the inside out.
In Winterveldt people initially grumbled when I hid the magazines. I felt a bit bossy doing it but thought what a shame to have supermodels and pictures of fridges on your memory box when I'd seen the kind of drawings people had done in the exercise when I'd invited them to reflect each other using a poem or a description or a portrait. Soon they got into it and were "commissioning" others to draw pictures of themselves on their own boxes.
Sanae Sawada, a family friend who I knew to be something of an expert around the recycling of waste into finely crafted art, has taught us how to make the most beautiful books also out of old cardboard, used paper and string. We encourage people to make a nice fat book with lots of pages and to make sure it can fit into their box. The technique we use is an old form of book-binding which blanket stitches the pages into the cover. The holes can be made with a long nail and no special equipment is required.
In Uganda, the positive mothers are guided by a format which is made up of pages with appropriate headings to help the participants work through different aspects of their family history, lifestyle, culture and beliefs.
These pages then get inserted into the memory book. Examples of page headings are:
Our family came from……….
Your grandparents' names were ………….
These are some of the jobs our family did……….
You walked when you were……….
One of the narrative inspired invitations which we use is, "So and so used to look at you with kind and loving eyes. S/he likes to tell about the time you ………………."
In the writing part of our workshops, participants are helped to develop thick descriptions and richly textured accounts of their preferred histories. CV like formats, which are really very thin descriptions of lives, are discouraged. The idea is to ensure that the characters in the story really spring out at you and that their voices be heard. Creative writing techniques in which sounds, tastes, smells, colours are evoked are layered in.
Once the process of making the box and the book is completed, the real work to fill them begins. We only kick-start this process which can be life-long and which continues in our absence. Absolutely anything can be put into the books and boxes and we encourage participants to direct the process themselves. Some of the more obvious things to include are:
photos, family trees, audio cassettes capturing singing and talking voices (stories and direct messages), children's drawings, artefacts, etc. Video can be also be used however it is a more expensive medium. We have had some workshops which focus specifically on family trees. These map out all the branches of the family. Many people discover that they know little about their families during workshops. They then go out and have really good conversations with older family members and begin to document their family histories. Once someone has a basic map / tree of their origins, they can then think about depicting this more creatively. Two ways which we have come up with include making a mobile and making a chest of drawers out of matchboxes into which some basic information about each family member can be placed.
Memory Books can also be very practical. Beatrice from Uganda begins her article, "One of the ways some positive women are dealing with the possibility of death, is by concentrating on some practical plans. We've sorted out our wills, we have planned our own funerals, and where necessary the funeral of our partner. We've made arrangements for our children to be looked after by relatives or friends."
Memory Box work generates a safe and creative context for what can only be described as the very challenging and courageous practical work which many positive people have to face. Some of our own workshops focus on the more practical aspects, for instance input around writing a will detailing wishes, hopes and instructions around the futures of children. Living wills, where one's wishes for the time one is still alive but very ill and perhaps unable to communicate one's wishes clearly, are also discussed.
Inspired by a documented conversation between Cheryl White, Michael White and David Epston, I have also introduced an exercise in which people are asked to consider a dispersal of their non material value via the preparation of a will. We use the same basic document as the will in which the dispersal of their physical property is recorded. Non material value might include such things as work in progress, values, visions, ways of being etc.
On the one hand Memory Box work involves a very private and personal journey. On the other hand it is all done in groups and some people find it very meaningful to have their lives witnessed by considerate, understanding and caring others. This outsider witnessing can be pushed a little further into what are referred to as definitional ceremonies.
These are staged happenings in which preferred identity claims can be performed and strengthened in the public realm. This is done in front of specially selected audiences whom the people striving to redefine themselves imagine will be appreciative and supportive. These ceremonies can become powerful rituals enabling HIV affected individuals to step into preferred identities of self which are perhaps more difficult to bring forth in society at large. Disclosure of one's HIV status is never a step to be taken lightly. While some individuals report public disclosure as an extremely positive step to have taken, others have experienced stigmatisation, exclusion and worse (Gugu Dlaminii was murdered after she
disclosed in 1998). For these reasons, no pressure is ever placed on any participant to exhibit their work.
We are all going to die one day and we believe that the process of making a memory box is a very worthwhile exercise for everyone. In our work and whilst exhibiting, we deliberately attempt to de-emphasise any participant's HIV status. Rather, our books and our boxes are the creative work of a group of individuals who, like every one else in South Africa, is affected by the HIV / AIDS pandemic. We want to guard against these boxes becoming symbols of death and dying, but at the same time, we believe that the more visible the pandemic becomes in eyes of the public, the greater chance of it being addressed. Whilst many organisations in the field refer to their membership as being made up of both HIV infected and affected individuals, we use the more inclusive term of 'HIV affected'. HIV affected describes any one and everyone, but particularly those of us who feel we need to do something in this field because HIV / AIDS is affecting us all.
When we began the work we thought it was all about dying. Soon we realised that it is all about living and all about how we see ourselves. If you make your own memory box, imagine someone in maybe 10, 50, 100 or maybe 1000, years time, opening it, holding up a photo to the light, reading words, or inserting a video or audio cassette into a machine. How they see you will be largely determined by how you see yourself now. The memory box process is able to help a great deal in relation to changing negative self image, as well as in relation to shifting self blame and shame. It is about finding, naming, documenting and stepping into our preferred versions of our selves.
This work has been significantly influenced by a school of thought called narrative therapy or re-authoring therapy. Stories are central to this way of working. For us, a story is a series of events, linked across time according to a plot or a narrative. Narrative therapy tries to assist people to identify and bring forth preferred plots or themes in their own lives. Once these preferred plots are identified, thickened and told to appreciative audiences, it becomes easier to step into them and to live by them. Memory Box work is able to incorporate these ideas in many different ways through interactions with individuals, families and communities.
As vehicles to take this work forward we have recently formed a little company called the Memory Box Agency, as well as South African Memory Box Association (SAMBA) which is principally a co-ordinating body. It looks as if our Memory Box work is poised to enter into a new chapter. We are talking about linking up with the work previously done under the banners of the 'Living Together Project' and the 'AIDS Memorial Quilt'. Each panel in the quilt commemorates the life of someone who has died of AIDS and is made by friends, family members, colleagues and caregivers. Through the panels the quiltmakers spread their sincere prayers for not repeating the pain and loneliness they have experienced in losing a loved one. Panels have been made in over 40 countries and the well travelled quilt is one of the great memorials of our time, and one of histories most powerful tools of political art. The Memory Box project draws much of its inspiration from the Quilt Project. It also strives towards becoming at the same time a highly political and personal form of expression. The Quilt Project too in its most recent phase has begun to make space for more narrative expressions and documentations of HIV affected individuals which brings the two projects even closer.
In the place where I and my children and my friends live the big threat is HIV / AIDS. To not address the effects of the pandemic is like doing nothing during apartheid or the holocaust. Nelson Mandela and others have said that we should address this crisis decisively or history will remember and judge us harshly. The issues surrounding HIV/AIDS are bound up with so many others including issues of poverty, community, development and gender. The only way to effectively halt the spread of the virus is to implement interventions, which address these other inequities. Thus the pandemic provides a challenge and a focal point around which all South Africans can engage in a wide variety of developmental initiatives.
Have a look at the African Family History Discussioon Forum
Memory Box Agency consists of Kyoko Kimura, Adelaide de Broize, Sanae Sawada and Jonathan Morgan.
They can be contacted at jmorgan@commerce.uct.ac.za. tel: (021) 650-4659. Jonathan Morgan is a South African, not-very-clinical psychologist in public practice. He is also a journalist, published fiction writer, family historian and Memory Box maker. In 1999 his book "Finding Mr Madini" was published by David Philip. It documents the life stories of ten homeless people, all of which intersect with Jonathan's own story. Jonathan will be running 2 one day workshops at the 2001 Adelaide Conference.
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Created: 13 March 2001
Updated: 14 February 2006