MEMORY / LIFE STORYWORK

MANUAL MAP VERSION, SEPTEMBER 2004 

Main author: Jonathan Morgan Editorial, layout and other input:

Kylie Thomas, Lisa Stratton, Anya Subotzky, SanaeSawada and Colin Almeleh

Body Mapping originator: Jane Solomon.

This manual began as the work of Jonathan Morgan in 1999-2000, inspired by the work of the NACWOLA women of Uganda.It underwent further development under Jonathan's directionat the Memory Box Project, UCT, (2001 - 2003). Most recently

it has been developed with Memory Action Projects (MAP),which is a UCT - REPSSI collaboration. 

INTRODUCTION

This manual has been made to help people who want to run memory workshops as part of their work. 

Memory tools are used for people to record their own life stories. Memory work was begun by a group of HIV positive mothers in Uganda who used memory books and boxes to help them disclose their positive status to their children, as well as to begin the process of future planning together. 

This is not to say that memory boxes are only for HIV positive people or that HIV positive people who make them should mostly write about their HIV status, or that they should only be used to prepare for death. Many of the peoplewe have worked with have used them to fight for life. Anyonewho wants to work creatively with his or her story can make a memory box. One person, a parent and child, a whole familyor a group can make the memory box. This manual will be useful for anyone who runs groups as part of their work. 

When you read the comments that some people have made about memory boxes and books, you will see that people make memorybooks and boxes for many different reasons. You will also notice that much of this work has been developed with peoplewho are living with HIV and AIDS. 

· "My memory box has helped me a lot. Everything I think I write down on my box. Every time I have a dream, I write it down."

· "I am talking about my life. I am drawing my mother with me, and my baby, and my child. I make the memory box to disclose my status. I like the memory box because when I write it down then the stress goes away."

· "I have drawn this fish to show I am alive, just like a fish in the water."

· "I took my box home to paint and now it will never come back, it is a wardrobe which my child keeps toys and clothesin."

· "It was good we did not have enough scissors, it made us share and be close."

· "At fist I didn't like it, I thought I was going to die, then I realizes it as a good thing, I saw everyone had oomph, we became happy when we were doing it."

· "I think it can help because when I talk about my status and feelings to family members they silence me by not wanting to hear, when I write I can get it all out."

· "If I die this box has helped me get ready. I have writtenmy hopes for my children and where they come from. This is not to say I accept that because I have HIV must die. I am amember of TAC the Treatment Action Campaign and I use this box to show people how to fight for life, how to march and how to eat healthy."

Memory work, Preparation for death? Legacies for orphans? Fighting for life? One size fits all, or time for product differentiation by Jonathan Morgan

In the popular imagination, memory work is associated with apreparation for death. There is little doubt that classical memory work, that is, memory work as legacy for orphans, andmemory work as succession planning, fits best and is most poignant in the face of death and dying. In ARV contexts, however, forms of memory work have evolved to assist people living with HIV and AIDS to live positively, to hold on to life, and, as some have suggested, even to celebrate life. And it is of course recognised, that the greatest service one can render a child whose parent is living with HIV, is to keep the parent alive. 

There is a question whether these contemporary forms that turn classical memory work on its head can and should still be called memory work. Has memory work lost its focus, has

it outgrown a one-size-fits-all approach, or is the problem that it has never been properly defined? This paper offers some definitions. It also sketches out how M.A.P (Memory Action Projects), a collaboration between REPSSI and the Psychology Department at the University of Cape Town (UCT) ,is beginning to look at all the memory products on offer, and to tailor make a range of tools in response to a spectrum of needs and situations facing HIV-affected adults as well as children, all with different levels of access to treatment and services. 

Memory work

NACWOLA (the National Association of Women Living with HIV and AIDS), the Ugandan pioneers in memory work, refer to memory books primarily as a communication tool between parents and children. In contexts where treatment has not been accessible, the key messages that are communicated to children by parents living with HIV, are ones around disclosure of HIV status, changing health status as the illness progresses, the possibility of the death of the caregiver, succession planning, and information about roots and family history seen to assist in the process of identityformation for the child who might grow up without parents. For the purposes of this article, this kind of memory work is referred to as classical memory work. Before examining how memory work has evolved in the context of widespread antiretroviral use, a jab at a broader-based definition, that can encompass both classical and contemporary memory work will be attempted. Memory work might be defined as the deliberate setting up ofa safe space in which to contain the telling of a life story. This space might be a room, the shade under a tree, adrawing or a map, or a memory box, basket or book. In therapeutic contexts, the scope of memory work is not necessarily restricted to the past, its purpose is often to deal with difficulties in the present, and its main orientation often tends towards planning and the future.For purposes of illustration, what follows is a range of

client needs, and a selection of memory tools currently being developed, monitored and evaluated by post-graduate students and staff within the Psychology Department at UCT. The range of client needs is by no means exhaustive and it should not be assumed that any particular client will not find the other memory tools also useful and relevant. Buriedin the rationale, is also the premise that memory work needsto be a systemic and integrated intervention, at times working only with the vulnerable child, at times working with several members of the household together, and at timesonly with the parent or caregiver living with HIV or AIDS. 

Scenario 1:

Client: An adult with advanced-stage HIV who has no access to ARVs. 

Memory work: The anticipated needs of this client are best catered for by classical memory work such as the model offered by NACWOLA in Uganda, and the core manual developed within the Memory Box Project (MBP) in the AIDS and Society Research Unit, up to 2003. This manual has been further developed with a stronger psychological focus within M.A.P. 

This client might wish to:

1) Find his or her own reason for engaging in memory work.2) Review and re-story his or her life and come toterms with probable death.3) Map out his or her lineage and support system so that surviving children will know their roots and to whom they can turn.4) Open up communication with family members including children. 

Scenario 2:

Client: An adult with early- or middle-stage HIV illness whohas no access to ARVs. 

Memory work: 

Her needs are well described in the languages of Narrative Therapy and Treatment Literacy. She will be encouraged to find her own power, knowledge, skills and agency in the faceof this formidable challenge. Before HIV becomes AIDS, she may be able to slow down or even reverse the course of the illness via self care, and by becoming knowledgeable about arange of treatment possibilities. 

In a support group setting, this client might wish to:

Go on a guided journey in which she traces a life-sized bodymap of herself onto a sheet of paper. This is an opportunityto explore, record and review the ways in which she picturesher body and her life. Body maps can capture the marks life leave on our bodies (laughter lines, scars, infections, bruises, beauty marks), and they can also be extended to trace and plot the paths our bodies make across life (our ancestral lines, journeys and hopes). It is a chance to engage in life drawing and full-length projective instrument. As art works and communication tools, body maps can convey powerful messages. A body map might be used to express how an infection flared up, how a traditional remedyhelped, or a feeling held in one's heart. In another body map you might find a story of disclosure which gets shared in the group. Due to the highly evocative nature of the process, body maps should be used with caution, to avoid thepossible retraumatisation of clients who have experienced significant challenges. It cannot be assumed that body mapping is therapeutic in itself. 

Scenario 3: 

Client: This client has HIV, reached stage 4 of the illness,his CD 4 cell count went as low as 200, but he was able to

access ARVs.

Memory work: On one level, the needs of this client perhaps centre most strongly around adherence. ARV regimens demand that patientstake the drugs several times a day (usually three), every day for the rest of their lives, for the drugs to be effective and to avoid building resistance. This client might need to keep tracking his wellness/illness, keeping current with his own emotions around this, and keeping communication channels open with significant others, including health care professionals. 

The reasons why patients struggle to adhere/comply to drug regimens has more to do with social and psychological factors than purely medical ones. For instance, the client/patient might not have disclosed his status to other household members, which makes it difficult to store the ARVs in the home, and to take them at mealtimes. Or a patient might become depressed and forgetful. Or he might not have enough money to get to the clinic in time to collect his monthly supply of ARVs. These are all issues thedoctor, nurse and social worker, and other support group members need to know about in order to offer help. 

It is against this backdrop that the Tracing Book as patient-held file was developed. Tracing books are a form ofmemory work in the context of ARVS in that they help patients to remember and not to forget, amongst other things, to take their medication. 

One scaled-down version of the life-sized body map and a sheaf of blank pages made of transparent tracing paper, makeup the handbound patient-held file, in which the patient is able to track and communicate ongoing physical and emotionalchanges in his or her body and mind. 

After one week, on the first sheet of tracing paper, an infection might be recorded and marked on the left thigh. By

week two, it might have gotten smaller or bigger. A TB-related cough might find expression on the chest. With the patient's consent, the doctor might sketch out a lung or write down a CD 4 cell count onto a page. A change in environmental status, for instance, being forced to live outside on the street as a result of disclosure of HIV status, might be recorded as a note outside the body. In these and other contexts, communication between doctor and patient, and between patient and household members, and between support group members might be enhanced. 

Some of the limitations of life-sized body maps are that they are one dimensional, unwieldy and not very private. By making a tracing book, which is both a communication tool, apatient-held file, and a reflective journal, with each new page, you begin to animate the flatness and fixed temporal limitations of the body map forwards in time and space. 

This is what Eve Subotzky, a doctor at Masiphumelele Clinic who has been central to the development and piloting of tracing books, reports: 

"The tracing books help me to see the whole person, not just their bodies and organs, but their thoughts and worries, even if I am not able to address these directly, it is important to me that I am able to acknowledge them. With one patient in the pilot, I was struck by how her record allowed space in the consultation for communicating wellness and not only illness. Another patient's beautifully graphic picture conveyed all the complexities and paradox around being at the same time, happy, anxious, unwell andbetter. Her tracing also illustrated a significantnew symptom, peripheral neuropathy, which I may well otherwise have missed. A third patient's tracing book not only tracked all the dramatic emotional and physical changes he had ridden out

in the last few months, but how he used this book primarily to communicate to me his overriding concerns about his son who was very ill but is slowly improving on ARVs." 

Noxolo Mahobo was the first person to publicly disclose her status in Masiphumelele. She is presently an adherence monitor for CIPRA, and is also part of the MAP memory working group. About her own tracing books she reports.

"One week I showed it to my daughter and explained why I wasnot feeling well and couldn't help her with her homework. She understood me well. In it on another week, she also seesme with my hands up and feeling strong." 

Scenario 4:

Client: HIV-affected child whose mother is HIV positive withor without access to treatment.

Memory work:

Living with the knowledge or second guessing that your only caregiver, maybe your mother or father, has HIV is not easy.It is important that your caregiver/parent communicates withyou and allows you to express your anxieties, to have these issues out in the open, rather than as repressed fears and/or as taboo topics. The kind of interventions to offer this child might take the form of play therapy, therapeutic interviewing, projective assessment, or child-focused narrative therapy. 

In response to the extraordinary range of challenges facing so many children made vulnerable by HIV and AIDS, Hero Books, a particular kind of memory book which combines elements of several types of child-focused interventions, have been developed.

A Hero Book is a document, and a process, in which a child is invited to be the author, illustrator, main character andeditor of a book that is designed to give them power over a specific challenge in their life. The Hero Book process can be described as one in which groups of children are led through a series of drawing exercises and autobiographical story telling, designed to help them with mastery over specific problems or challenges in their lives. At the end of the process, the child will have a handbound storybook oftheir own making, that heralds and reinforces their hero-survival-resilient qualities.

Hero books draw heavily on the theory of Narrative Therapy and "externalizing discourses" developed by Michael White and David Epston. There are also strong elements of expressional art and of projective drawing in the Hero Book process. The challenges a child might want to take on using a Hero Book, include behavioural, emotional and social problems. Behavioural problems might include bedwetting, poor concentration, aggression and bullying. Emotional problems might include depression, sadness, grieving and anxiety. And social problems might include having to look after the cattle and not be allowed to attend school, or being subjected to abuse in the home. 

The basic formula or map of the territory to be explored in these externalising conversations is:

1. A particular problem is identified and named.2. It is then located as something outside of the person and not bound up as part of their identity,personality disorder, or within their field of self-blame.3. A 'shining moment' or 'unique outcome' is identified in which the person experienced, however fleetingly, some power over, or hope in the face of the problem4. There is an unpacking of some of the things

(tricks, tactics) the person can do, or has begun to do, to achieve a measure of control over the problem.

An important part of the Hero Book happens after the child has drawn and explained a whole series of drawings. The co-author or helper, then retells a hero story back to the child preferably in written form, which then becomes the introduction to the book. It stands beside the child's own words which are explanations of the series of drawings.

In the box below is an example of a hero story, retold by Helen Meintjes and Jonathan Morgan to a child and his caregiver, both of whom participated in a Children's Bill Child Participatory Workshop facilitated by the Children's Institute, UCT.  Nelson and Pumla 

This is a story about two heroes, Nelson and Pumla. Nelson used to live with his mother and father. He used to love his mother very much. They used to sing together. She was a very kind person. Unfortunately Nelson's mother became sick and she died. She would have been very proud to see what a hero Nelson has become. After his mother died things became very hard for Nelson at home. There was not enough food and not enough money to send him to school. Everyone was suffering and there were many times that Nelson was beaten. One day Nelson took a big big step. He ran away to his school principal Pumla, and told her that he was being abused, and that he could not carry on like that.Pumla looked at her school, at the buildings that were only used in the day but not in the night, and at this little brave boy who needed a safe place to stay and a roof over his head.She said, "You can live in this school." At this moment the hero in Nelson met and brought out the hero in Pumla. Pumla transformed her school into a community centre for supporting children. She and the other teachers started a seven- day feeding programme so that children who didn't get food at home on weekends could come to school to eat, even on a Saturday and Sunday. She bought chickens, and Nelson and some

other boys looked after them, and enjoyed eating their eggs. They laid many! 

Now Nelson lives at the school with six other children. They are his brothers and sisters now but he has also not forgotten his brother who died. To make his sadness smaller and his happiness bigger, Nelson plays soccer. He also wants to make other children feel better. Nelson has joined a children's group. They speak to children and teachers in schools educating them about abuse. Nelson is a hero because he has the courage to break the silence around abuse and stand up for his rights and for the rights of others.A hero is a person who has experienced something bad and beaten it. An expert is someone who knows a lot about something because they have experienced it from the inside out. Nelson is a hero because he stopped the abuse in his life, is preventing others from being abused, and he is an expert on abuse. He can tell you the difference between verbal, physical and sexual abuse, and he can tell you what the Children's Bill says about abuse.It says, "Parents and caregivers are allowed to hit children but not so hard that they leave bruises or marks" and that government must educate parents/ caregivers of other methods to discipline children ..."He also knows that since 2000 the law has said that teachers are not allowed to hit children. No smacking in schools.With all his hero qualities, and with the support of amazing people like Pumla, Nelson can look forward to a bright, bright future.

Remembering Books are a particular kind of Hero Book in which the child is helped to grieve and remember a lost loved one. Both a grandparent who is grieving for a child she has lost to AIDS, and her grandchild who is grieving theloss of his mother, might find a remembering book helpful and meaningful. It is something they can make together. MAP and the Ten Million Memories Project however recognises thatthe greatest service we can offer a child who has a parent living with HIV is to keep their parent alive. 

Conclusion

The aim of this paper was not to suggest that classical memory work is passé, and that contemporary memory work is the thing. While we are waiting for and working towards the

rollout of ARVs, there remain millions of children who have lost, are losing, and will lose loved ones. In these contexts there remains a need for memory work as succession planning and for grieving.

The danger is that if memory work remains in this space and only addresses these contexts, there remains no opportunity for the work to be transformative and revolutionary. Confined to operating as if treatment is an unrealizable dream, it is in danger of being complicit with this unacceptable and inequitable distribution of resources. 

It must also not be assumed that if memory work is for life,it is not for death. Many people who are on ARVs, die of other things, motor car accidents, heart attacks not relatedto their HIV status, murder, etc. Every one of us is both living and dying at the same time. Memory work is for everyone. 

In all kinds of contexts it needs to be articulated into an art which holds central sharing, healing, documenting and containing. There are many inspiring examples to draw on. South Coast Hospice's lockable tin telephone. NACWOLA's prompts. Mad's Art Attack. Sinomlando's family therapy. 

The time has passed for a one-size-fits-all approach to memory trainings. Hopefully this paper has made the point that client needs and their access to treatment have to be taken into account when designing memory interventions. 

Lastly, if memory work is not necessarily just about death, but also about life, and if memory work is not necessarily about the past but about the future, should it still be called memory work? Memory work is like a rearview mirror in a car that is goingforwards. As a concept and as a field of study, memory is inclusive enough to embrace a diversity of thinking, feeling, art and science, all of which combine to make this work so rich. Quantum physics would also have us believe

that all time - past, present and future, some would even say living and dying, life and death - are continuous. In a real tick-tock sense, the one follows and flows into the other. This is the space into which memory works. 

Acknowledgements

· To everyone who has shaped the work, in particular, Anya Subotzky who led the way in implementing the tracing book action research project which began when she was a Fellow within the Memory Box Project, AIDS and Society Research Unit, UCT, in 2003.· To Noxolo Mahobo, Liziwe Kweyama, and Xolisa Sijora and other support Masiphumelele members for their courage and creativity, and to their doctor and colleague, Eve Subotzky. · To Pumla and Nelson, and Helen Meintjies associated with the Children's Institute, UCT.· To the hopefully ever-widening M.A.P and working group dialogues which thus far have included Sally Swartz, Sia Maw, Pumla Gobodo Madikizela, Johann Louw, Natalie le Cleusier, Reygana Adams, Peter Schaupp, Ann  Turner, Jo Stein and the MA Clin students. · To REPSSI and all its partners in the Ten Million MemoriesProject · To Jane Solomon for bringing us body maps· To the Khayelitsha A team· To Carol Lindsay Smith, Beatrice Were and NACWOLA for the first sparks.· To organisations like TAC, MSF and CIPRA who keep on reminding us not to ever accept that people should die as a result of this completely treatable virus. 

This article appears in its original form in the June 2004 edition of the AIDS Bulletin.         

Materials:

Before we go any further, here is a complete list of the materials you will find very useful. You can use this list to help you and others prepare for workshops.

Material Description Quantity  Supplier  Tick1   Boxes and

cardboard for book covers

It's good if everyone can bring their own box, it can be any box, a shoe box or a bigger or smaller one, and 2 pieces of cardboard for each box Covers

1 per person

Refuse bins,shops

2  Paper If your organization has lots of paper that hasbeen printed on one side, bring lots of it

A few reams

 ?

3  Photocopies of photos

If people can bring these tothe first Workshop, theycan be quickly photocopied, returned and incorporated into boxes and books

? Home

4 Wax Crayons Buy Crayola 1 small Stationary

brand if you can; they  arebrighter colours and not much more expensive

box of 10  for every 3 participants

Shops

5   Food colouring

A set of red, green, yellow and blue

Set of 4for every 3 participants

Supermarket

6    Paint brushes

Very thin small ones that fit into food colouringbottles

4 for every 3 participants

Hardware shop

7 Pens Cheapest pens  1 each Stationary Shops

8    Scissors Small 1 for every 3 participants

Stationary Shops

9     Sponges Ordinary dish washing sponges with one rough side

5 Supermarket

10 Nails 10 cm nails 5 for every 3 participants

Hardware shop

11 Hammers Cheapest hammers

1 for every 5 participants

Hardware shop

12 Paper clips Regular without plastic

1 packet

preferab

Stationary Shops

coating ly, any will do

 13 String Not too thick 1 ball per 20 participants

Stationary Shops

14 Refuse bags 1 roll Supermarket15  Bottles of

water to wash paint brushes and sponges

?

16   Glue Any glue that can stick to paper, you caneven make it with flour andwater, (see heading calledsticking in manual)

1 litre per 20  participants

17 Name tags A self adhesive sticker to write each person's name on

1 per participant

18    Stanley knives

Those blades with a handle to cut book Covers

1 for every 5 participants

Hardware shop

19 Lots of old newspapers

To work on so that participants don't make a mess

Memory Books

1:  How to make a memory book

You will need, cardboard for the cover, paper for the pages,a piece of string or wool, a paper clip, and a few long thick nails. A hammer is also useful.

· Decide on the size of your book (do you want it to fit inside your box?) and cut out a cover using two pieces of cardboard.

· Decide how many pages you want and put them in between thecovers.

· The next step is bookbinding. Square up the pages and the cover and then take a nail and hammer or poke it through both covers and all the pages half way down the page about 2centimetres from the edge. 

· Leave that nail in and make some more holes along the spine of the book until you get near to the edges of the cover. 

· Take the paper clip and bend it into a needle and then thread the string through the holes till the book is bound. Tie a knot in the string.

· Facilitator to demonstrate making of one book, which can then be used as a comments book for participants to record at the end of each workshop. 1 - "WHAT THEY LIKED," 2 - "DIDN'T LIKE," 3 - "HOW THE WORKSHOPS CAN BE IMPROVED." Thisis a very useful evaluation tool for you the facilitator.

Exercise 2: Decorating the cover or the first page 

After having made a book, people often like to decorate the cover or the first page. This exercise can be done on the same day that people make their books.

Perhaps this is a good time to introduce one of our favourite art techniques.

You will need wax crayons, some liquid food colouring that comes in tiny bottles, and a paintbrush. 

· Draw or write pressing quite hard with the wax crayon. · Paint over your drawing with the food colouring. · See how the wax doesn't allow the food colouring to be absorbed into the paper and the great effect this creates. Experiment with different colours. · This technique can be used on other pages and on your box.Writing with a white crayon and then painting over the wordswith food colouring works really well. 

You can write your name on the cover of your book if you want to or you can just draw an image to decorate the cover and front page.

Dedication 

If you go to a library and open up a few books, you might see something like this:

"This book is dedicated to my mother and my father, may they rest in peace."Or"This book is dedicated to my children, may they be safe and happy forever."Or"This book is dedicated to me, myself, I. May we achieve great things." 

You might want to dedicate your book to someone.

Exercise 3: Windows

If you are making a book or a box, these windows can help you decide which stories and parts of your life you want to you want to draw and write about.

THIS IS ONE WAY TO INTRODUCE THE WINDOWS:

"Your life is big but your book or your box is small. You cannot fit your whole story into it. Which stories or parts of your life do you want to begin with? These windows might help you decide. Each window is a story about you or a part of your life. Maybe you want to begin with NOW or maybe you want to look at your HISTORY. You can write a heading, or draw a small picture in each of the six windows."

Here are some ways people filled up their windows:

Busi explained her windows as follows:

For window 1, I drew when I was 5 years old, as you can see the person looks sad, it was when my troubles started.

For window 2, I drew a book, it symbolizes when I started school, I was so excited, the family who adopted me bought me a uniform and the mother of the house accompanied me to school, I was good at school and in standard 5 I started to come first 

For window 3, this is a step ladder with the arrows going up, the person is me, I was starting to have a good progress at school, I thought I would get to the top of the ladder, even if I had no parents I would have an education

For window 4, the arrows are going down, I draw myself the day I had to leave school, the family were not treating me well, like a slave in fact, Iwent to Gauteng to someone I thought would be kindto me but she was not, but I really wanted to go to school, so I explained my condition to a principal and a teacher offered to pay my fees forstandard 7 and 8, for standard 9 she couldn't so Iwent to Cape Town and worked in a restaurant, and in '94 I went back to school paying my own fees

For window 5, I have drawn a shadow, I got diagnosed and when I heard that me and my child were positive I just sat down and said maybe I should just give up and wait for my dying day, I was confused I was studying for a better life thenthis HIV thing came in

For window 6, when I joined TAC, my life changed, I became a hopeful person, that's why my arms are like that, the confusion and the shadow went away 

SOME THEORY ABOUT MEMORY BOOKS/BOXES AND NARRATIVE THERAPY:

The windows exercise allows people to begin to think about

what is most important for them to be expressing and dealingwith (writing/thinking/talking/painting). Memory Box work has been influenced by a school of thought called Narrative Therapy. This way of working with people and their stories was pioneered by Michael White and David Epston. A story is a series of events linked across time by a theme or a narrative. This work tries to help people find empowering themes or "plots" in their own lives. 

Each of the six windows in the windows exercise allows participants to think about different part of their lives and to make sense of these in story form. Some people use all 6 to think about things that are important in the present. Others have linked the distant past, beginning witha particular ancestor, to the present. And others have included their hopes and fears about the future as part of the story that was important for them when they did this exercise. 

In a similar way the windows exercise can be seen as a projective instrument, a kind of blank screen onto which people project their inner worlds and minds. This might be interesting to them as well as to others, for example other people in a support group going through similar challenges, and to outsiders like researchers. Most importantly the exercise gives people a starting point to begin to plan their book or box (i.e., how they want to represent themselves.)

After filling in the six windows with symbols or words, participants can be asked to think about the plot (see exercise 4)

Exercise 2: The Retelling 

Purpose: to encourage someone by telling them their story back to them in an empowering way 

Often, when we think about our lives, we think about what a

battle it is. It is also easy to feel like we are losing that battle or that struggle. In Narrative Therapy and Memory work, we try to help people to recognize ways in which they are not only losing and not only victims, but also survivors and winners and heroes in their own special way. 

· Get into pairs· Ask your partner to share his or her window one with you· While you listen write down a few words that jump out for you · Once you have shared all the windows, use these words to construct a retelling of the person's story · Make sure you listen and try your best to retella story that has hope, that highlights the storytellers positive qualities, etc· When you do the retelling you can imagine you have just a few minutes to convince a film producer that this is an amazing hero story and that it really will make an amazing film because of the hero qualities of the main character and what he or she is facing with so much courage. 

A good way to get to the plot is to begin with the words

"This is a story about ……………"

for example:

This is a story about…· … a boy who always had hope, and who could see light even whenit seemed very dark.· … courage and a girl who had lots of it.· … a family who supported each other so much.

· … me and my family and how we respect one another.· … a woman who never likes to give up.· … a family who were able to see what got in the way of them loving and supporting each other and who were able to make big changes. · ……about how I always fight for what I want like my life right now even though I'm HIV positive 

Exercise 5: Thinking About Why?

It probably seems like a really good idea to be doing all of this. What is perhaps more important is that the group you are working with also thinksit is a good idea. You want them to be motivated to engage in the work and to be able to find theirown meaning for making a book and / or a box. 

The following questions were designed to give everybody a chance to take ownership of the process, to take a step back and reflect on what they are doing, and to stimulate discussion.

People can answer these questions alone by writingdown their responses and then they can discuss them, or the questions can form the basis of a discussion without any writing. These questions can be asked in the beginning of the project but you might want to ask them again after a few sessions - the answers might change as the processdevelops.

DO you want to make a book or a box?

WHY? WHY NOT?

WHO is the box/book for? How many do you want to make? 

WHERE will you keep your box / book? 

Is the process more important to you or is it the product?

*** After thinking about these questions or writing down some responses, perhaps you can discuss your responses to these questions in smallgroups. 

Exercise 6 - Sharing in Pairs

This exercise is not really an exercise in the strict sense.It is more of a skill that you need to be able to keep alivein all your workshops.

Part of memory box work involves people working alone as well as people sharing and supporting each other. After people have filled in their windows or worked alone in another way, ask them to get into small groups of 2, and to share what they have been doing.

Allow each person 5 minutes each (10 minutes in total). Encourage them to listen respectfully and to comment on eachother's stories without giving advice. Maybe you want to tell the person you were listening to that you think that they are very brave or that you have experienced something similar yourself.

Exercise 7: Zooming a Window

ZOOM means to make something small - BIG. Remember when you sketched out your story across six windows? There was very little space in each window so you just drew a symbol or wrote a few words in each one. ZOOMING a window means expanding that symbol or key word into a larger picture or story. Whether you do it on one of the panels on your box or

on a nice big clean page in your book is up to you. This exercise is important because it gives people a chance to think about their life experiences in more depth. The story from just one window might grow to be many pages long. Remember to add detail in the form of voices, sounds, smells, textures, tastes, colour, etc. 

Exercise 8: Prompts

A prompt is a word or a few words to get you going when you begin to write or tell or draw your story. Some people know exactly what they want to write. Others need a little push or a prompt!

Below is a list of prompts we have found to be useful. Some of them are designed with children in mind., Work with children is dealt with in more detail later on in this manual. Perhaps you want to choose some of these prompts to help you get started. For some you might want to write a fewwords and for others a few pages. You do not have to write. Maybe you want to draw. 

I want to say …………….Our family came from ………..Your grandparents' names were ………..…Our family traditions and values were ………….Here is the most important advice I would like you remember when you are older…………A day in the life of ………………………(me)School daysChildhood Finding out I'm HIV positive

Exercise 9: Making a Memory BoxIn Uganda the box was more or less any container in which tokeep the memory book. In South Africa, memory boxes have become important objects in their own right. The 12 sides are like pages of a book, surfaces on to which things can bewritten, painted, drawn and stuck. 

You might want to draw or paint directly onto your box or you might want to plan it first. 

This map can help you decide what, where and how you want togo forward.

How to Make a Memory BoxThis section could be called one thousand and one ways to make a memory box. As a Memory Box facilitator the basic rule is to allow participants to direct the process and to make their very own kind of box. Your job is to give encouragement and suggestions if people get stuck.

MaterialsThere is no limit to the materials you can use to make or decorate your box. If you prefer you can make a box out of wood or grass (like a basket) or tin or plastic or polystyrene or you can use an existing box or suitcase.

We have found that we really love recycling used cardboard boxes. Each box has twelve surfaces - inside and outside - which are easy to work on. 

A symbol is a simple picture or a word or a letter or a shape that stands for something more complex. 

For example: A flashing red light means danger. The number 100 with a red circle around it means Speed Limit 100 km/h. A picture of a dog with a line through it means No Dogs allowed. A picture of rocks falling down a slope means Danger, falling rocks. A tattoo of a heart with an arrow going through it means broken heart.

There is not a lot of space on your memory box so we are going to work with symbols. 

Here are 8 ideas we stole from participants of memory box workshops for the different panels / surfaces. A box is made

up of 12 panels or surfaces inside and outside. This adds upto 12 different opportunities to express yourself or to communicate. You can work with or ignore these ideas. Even if you use all of them, there are another 4 panels to do your own thing, and its completely up to you to make one or not, why? why not? what you want put in it, who it is for, how many you want to make, who you want to make it with, where you want to keep it, etc. 

Idea 1: Draw a symbol or design a panel that expresses your past or where you come from. You might want to draw your clan symbol or your totem or any symbol that represents where you come from culturally or geographically. You might want to include some photos from your past. 

Then write a few words that can fit onto the same panel to explain your symbol or panel.

Idea 2: Draw a symbol or design a panel representing where you are going to. A symbol that represents your hopes and dreams for the future. 

Then write a few words that can fit onto the same panel to explain your symbol or panel. 

Idea 3: Draw a symbol or design a panel representing you now. You might want to include a current or recent photo or a portrait that someone paints or draws in the workshop. 

Then write a few words that can fit onto the same panel to explain your symbol or panel. 

Idea 4: Draw a symbol or panel representing a scaled down version of your body map 

Idea 5: Draw a symbol or panel representing your windows andplot.

Idea 6: Fill up a whole panel with writing about your memory

box.

Idea 7: A panel for each of my children or for special people in my life. 

Idea 8: A slogan / message to the world

Exercise 11: Reflecting the Other

It might be better to do this exercise once people have beengiven enough time to work on their books or their boxes. 

A reflection is what you see when you look in a mirror. We can act as mirrors for each other. Because we often hold negative self-images of ourselves, reflections that are offered in the spirit of kindness and sincerity, can often be powerfully healing and supportive. 

In groups of 2, take a few minutes to show your book or box to your partner. The listener should be thinking, "my job isto reflect this person in a way that is good for the person who is sharing with me. I can draw a sketch of her, or I canjot down words that jump out at me and make a poem out of these, or I can write a paragraph summarizing her story or ahopeful plot within it. I will then offer my reflections back as a gift."

If you are the person sharing your book, box or story, give your partner a few more minutes to finish this "reflection" and then hand it to you as a gift.

A simplified version is to just sit opposite each other and to sketch/draw each other's face. You can both be looking and drawing at the same time. Make sure to write your name, the other person's name, and the date on the page.A nice addition is to include a blessing along the lines of,"May you…"

May you live long and grow fat and healthy.May you fulfill all your dreams.May you win the lotto.Etc…

The best way to get a group to do this exercise is for you and your co-facilitator, or you and a volunteer from the group, to quickly role play the exercise in one or other form in front of the whole group.

Exercise 12: Family Trees

A family tree is a list of all the members of a family showing how they are related to each other. 

You can use a square for a man and a "O" for a woman and a line joining them to show they had a relationship.

Here grandfather A married grandmother B. They had 2 children C and D. 

C married E and D married F. 

C and E had 3 daughters, G, H and I. D and F had one son J 

There are more creative ways to do family trees for example a chest of drawers made out of matchboxes. These are stuck together and each matchbox opens up like a drawer into whichsome basic information about each family member can be stored. You can also make a mobile which is a like a real tree with branches and string.

The next page sets out a space into which you can fill in your family tree or other relationships that are important to you. Begin by filling in your own name in the large leaf at the bottom. Above that there is space for your parents' names and above that for their parents. Space (but not leaves) have been left at the very top and bottom for great grandparents and children. 

There is also lots of space for information about each person that goes beyond their name and date of birth. Like the windows exercise, you can begin to write stories about them, which you might want to complete in more detail on a new page in your memory book. 

Perhaps this exercise shouldn't have been called "Water all your Leaves" but "Water all your Roots."

(you can also zoom an ancestor- i.e. take more time and space to provide more detail about a family member on a new page)

A Balanced Structure

In some ways these workshops are deliberately not very structured. The idea is to try and pass on the basic skills and then allow people to direct the pace and process for themselves. Structure comes in at the level of you the facilitator trying to make sure there is a balance of working alone, sharing in pairs, sharing in the larger circle. 

Below is an image of a traffic light that can act as a kind of checklist for you to see that you are leaving enough timeor creating a balance bet

1) working alone, 2) sharing in small groups, and3) larger circle sharing.

Picture all 3 types of activity as a traffic light. 

Green = people working alone on whatever they want to.

Yellow = people share in 2s.

Red = people share in big group. 

Making A Will

Written wills might or might not be part of your culture. Remember culture is always changing and it is people who change it. You will decide if you want a will or not. Beatrice Were from NACWOLA, the National Association of Women living with HIV and AIDS in Uganda, once wrote, 

"One of the ways some positive women are dealing with the possibility of death is by concentrating on practical plans.We've sorted out our wills, we've planned our own funeral and where necessary the funeral of our partner. We've made arrangements for our children to be looked after by relatives or friends."

Most people will tell you that it is a good idea for everyone, no matter how healthy or sick or old or young, to have a Will. 

A Will is a written document, which makes clear what you wish to happen after your death. A Will can: 

   Ensure that your property, land and valuablesare passed on to the people that you want to receive them  Make clear who will look after your property,

land or valuables until your children are old enough to do so themselves  Make clear who will look after your children

in future  Appoint a guardian to look after your

children 

In order for a Will to be legal you need to:

  Write the date on which you wrote the Will on every page  Sign or make your mark on every page in the

presence of 2 witnesses  The witness must also sign the Will on every

page, in your presenceAppoint an executor who is the person who will

make sure that your intentions and wishes are carried out after you die  The witness must be a person who is not

mentioned in the Will  The Will must be written when you are in sound

mind and you are not forced to write the Will by anyone else  The will must be written in pen and not

pencil 

1.This is the last Will of ………………………………………………………….. (put your name and place of residence here)2. I want ………………………………………………………………………(put the name of the Executor (person who carries out your wishes) here and his/her place of

residence) to be the Executor of this Will.  

I leave To

Put the property/land/ or valuables here

 Put the names of the people you wish to receive them after your death here

I appoint …………………………………………………………………………(put the name and address of the person who you want to look after your children here) as the guardian formy children.Signed at……………………………………………………………..(Place where youhave made the will) on ………………………………………(day, month,year)

----------------------------- (Sign here)

Witness:     Name                Signature                 Address (physical address)                Date and place

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Body MappingHow to body map:by Jane Solomon

(with minor edits by Jonathan

Morgan) 

A body map is just a big outline of yourbody, with lots of space for you to expressyourself and your feelings using pictures,words and symbols. It is a memory tool withlots of different applications and is useful

for sharing and receiving support. 

A symbol is something that is easilyrecognizable and that stands for something

else, something larger and morecomplicated. 

1) Get into pairs of two, but make sure you each have a piece of big paper / cardboard to make a body map on

2) Draw carefully around your partner's body with a black marker pen on a big piece of cardboard.

3) Choose a colour to represent you and paint around the outline of your body.

4) Ink up your hands and feet and stamp them whereyour hands and feet would be.

5) Close your eyes and feel where in your body youfeel the best or the strongest. Mark this place onyour body map with an X in pencil.

6) Close your eyes again and try think or "see" a symbol that represents the best parts of you, yourstrength, and your special ways. Paint or draw this symbol onto a piece of paper and then again onto your power point (the X you marked in pencil

on the body map) .

7) On a loose blank page, draw a portrait of your partner (see reflecting the other), hand the completed picture of your partner's face to them, and stick these onto your body map in the place where your face is. 

8) Write your name, where you were born and when on the cardboard. Write this nice and big in a place outside of your outline. 

9) Choose another colour and shade your partner everywhere they are outside the outline of your body.

10) Think up a slogan that explains you of how youwould like to be in the world or what you believe in. Write this clearly on your body map.

11) Notice all the marks, birth marks, beauty marks, scars, stretch marks, moles, pimples, rashes and wrinkles, wisdom lines, on your body. Draw these marks onto your body in the correct places. Next to the mark write something about howit came to be there.

12) Feel where else in your body, maybe deep down under the skin, you feel strong feelings, maybe good feelings or maybe or painful ones. Mark theseplaces using pictures or maybe just colour and words which explain a little bit about that feeling.

13) Outside your body, in one of the corners of the piece of paper, draw a symbol of where you come from that marks the beginning of a journey. This can be a village, a culture, a heritage, a country, an emotion (I come from sadness and am

moving to happiness). Add your date of birth. 

14) On the opposite corner of the piece of paper, draw a symbol that relates to where you are going - your goal, dream, vision. You are on a journey and your body is the vehicle. Join where you come from and where you are going to in some way through your body.

15) This is your body map so feel free to add anything else you like.

16) Now that your body map is complete, share yourstory with your partner or a friend. 

17) How do you feel about your body map? (Discuss with your partner and then in big group) 

A note of caution:

Body maps are very evocative and powerful tools. Through them we lead people to express their feelings and if these feelings are difficult or painful ones, to see them out there on a huge piece of paper, can re-traumatise the participant.Memory work has been defined a creating a safe space for the telling of life stories. With body maps you have to work especially hard to ensure the safe is space. 

Here are some guidelines:

1) make sure you first build a "scaffold" or positive framework to hold and contain painful memories that might be evoked. For example make sure you do not skip out points 6&7 dealing with personal power points and symbols 

2) warn participants that body mapping can unleashpowerful painful memories and suggest that they proceed carefully, and choose what they want to mark on their body maps and what they want to share in this group 

3) deal with confidentiality issues thoroughly, that is what is shared in the group remains in thegroup 

4) remind them that is a process of dealing with all kinds of memories and the purpose is to arriveat a overall picture of a person who has been through pain but has survived it, someone who has great resources

5) allow time for working alone, sharing and receiving support 

6) be clear that however beautiful the body maps might be as art objects, they belong to the artistwho made them and not to the organization who sponsored the workshop 

7) end with a round of reflections in which the person who made the body map tells their story viathe body map and then ends by saying,

"When I see this body map I see a personwho is ……………………………………………………………………………………."

They might say ……

" a person who is weak and hopeless and full of pain" 

This gives the group and the facilitator a chance to offer a series of counter reflections.

"When I see ………. 's body map and hear her story, I see a person who is ……………………" 

taking care to offer positive affirming reflections like 

" … a person who is so brave, who has suffered a lot but is a survivor and still kind ….."

"… a person who has their hands in the air and whois jumping and who has a beautiful smile." 

Someone who is sitting with lots of pain and negative feelings about their life and self, mightbe helped by hearing a whole group both acknowledging their pain and also seeing their strengths.

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