Memory Book as a New Genre of Illness Writing: How a Ugandan Mother Wrote about HIV

Abstract

A memory book is a therapeutic document and personal testament – a workbook written, most commonly, by a HIV-positive caregiver or parent for their child, about the family’s background and the parent’s life experiences, to guide the child in the parent’s absence. In Uganda, memory projects first emerged in 1998 as public health outreach for people with HIV. They encourage writers, often agrarian widows with limited literacy, to deliver their messages to their children and the world. While reports have focused on the psychosocial support the projects provide to the beneficiaries, the content, and modes of representation in individual books, have received little attention. This article undertakes a close textual analysis of the words and images in one memory book, written in English by a subsistence farmer with seven years’ schooling. Using the frameworks of narrative therapy and illness writing, it examines how this reticent writer represents, obliquely, through textual gaps and contradictions, her painful memories of her child’s abuse by her husband and her co-wife and the difficult experience of living with HIV. This article argues that memory books as a new genre of illness writing can help less literate, less heard people with HIV write their stories in their own words and can help us, the readers, understand their experiences and lifeworlds from their perspectives.

Keywords:

• life story
• HIV/AIDS
• Africa
• Uganda
• memory book
• health
• narrative therapy
• illness writing
• gender
• family

Notes

1 Precisely estimating the number of memory books written is difficult because they are distributed across various organizations with different completion rates. Community Vision (2004) counted 1 213 participants in their memory book workshops as of 2004, although not all the participants actually wrote books. Sophie Witter reported that 386 books had been completed in projects by NACWOLA as of 2004 with a completion rate of 75% of the books given out (10). As other organizations also included memory book writing in their activities, overall, perhaps several thousand memory books have been written in Uganda since the 1990s.

2 In Tororo, Beatrice Oyuki Acheinga, a writer and a community leader, explained that half of the writers in her group wrote in English and the other half in their own language, but that most of the completed books were in English (Interview, Tororo, 22 August 2014). Writers and readers in Tororo learned reading and writing in English at school (see Parry Language; Parry Reading) and found it easier to write in English, though they emphasized their preference for, rather than reluctance toward, English writing, as will be discussed.

3 Hawkins calls nonfiction writing about illness ‘pathography,’ while Frank prefers terms such as ‘illness narrative’ (‘Reclaiming’) and ‘illness story’ (Wounded Storyteller). For his choice of terminology, see Frank, Wounded Storyteller, note 34 on p. 226–27.

4 The format Athieno uses has 28 headings; the parenthetical number after each heading in the article indicates the order of its appearance.

5 We cannot know exactly when the polygamous relationships started. We can infer from the statement here that Athieno left the matrimonial home before the husband married two more women. Another citation, however, indicates that he started these relationships while she was with him (‘My Health’ 12; see Section 3). We can guess that his relationships with other women and his mistreatment of Athieno may well have gone hand in hand while she was with him.

6 For a discussion on the memory book model and narrative therapy, see Morgan, then a memory project leader at the University of Cape Town.

7 Gladding and Drake mention memory books, in a broader context, as one of their scriptotherapy exercises (388).

8 It is most likely that Athieno added information about her ARV use on a separate occasion, judging from the different handwriting and chronology (she wrote the major part of her memory book in 2002, while she started on ARVs in September 2003).

9 Athieno could not remember why she wrote this draft (Interview, Tororo, 5 May 2016); possibly to introduce herself at a meeting involving people with HIV in her sub-county, since the sub-county name is written on top of the passage.

10 Athieno explained the reason she wrote for her boy and not the senior girl: ‘the girl [had been] married’ (Interview, Tororo, 22 August 2014). That likely means that the daughter lived independently with her husband, while the boy was still under Athieno’s care. Athieno also explained that she started a second memory book, not for the daughter but for a son of her brother-in-law, whose mother had run away and whose father had mental problems. Obviously, her criterion was the perceived support need of the child, though his being a boy may have counted for something too, as her ethnic group is patrilineal.

11 Interestingly, the other picture taken in the same workshop included in ‘Special Memories’ (7) shows a different Athieno, with a round face, standing carefree, without expressing any particular emotion. The differences may unveil her tacit, probably subconscious will to highlight her anxiety with the picture of the serious and gloomy Athieno in ‘Information About Your Mother’ (3).