MAZI Articles

Participatory Media Help Ugandan Women Who Have Experienced Obstetric Fistula Tell Their Stories
by Amy Hill

Several years ago, Amy Hill, an instructor in storytelling, a documentary filmmaker and a public health/community development consultant travelled to Uganda to gather stories of rural women who have endured obstetric fistula. This article describes her methods, which offer women opportunities for counselling, health education and leadership development. She includes story excerpts and highlights local uses for such media pieces, which today are shared in training sessions to improve the skills of health providers. They also are effective in policy advocacy settings, to advocate for women’s rights, gender healthcare equity and improved access to childbirth services.

When I first had fistula, I felt useless.
Now I feel confident that I can be somebody in the community.
- ACQUIRE fistula digital storytelling workshop participant,
Masaka, Uganda; August 2007

Introduction: What is Digital Storytelling?
Over the past 15 years, practitioners of digital storytelling around the world have refined their methods for producing short, first-person videos that document a wide range of culturally and historically embedded human experiences (Lambert, 2002; Burgess, 2006). While the terms “digital storytelling” and “digital story” are used to refer to a wide array of media practices and products, they originated in the early 1990s at the U.S.-based Centre for Digital Storytelling.

As developed by the Centre, the digital storytelling workshop brings small groups of people (typically eight to ten) together over the course of three to four days to share aspects of their own life experiences in a “story circle,” record first-person voiceover narration; select and/or generate still photos and short video clips to illustrate the stories; and assemble these materials into digital videos (CDS web site, 2008).

With its focus on first-person narrative, digital storytelling seeks to honour the stories people share (Thorne, 2000; Bruner, 2004). As anthropologist Eleanor Ochs writes, “Personal narrative simultaneously is born out of experience and gives shape to experience … we come to know ourselves as we use narrative to apprehend experiences and navigate relationships with others.”(Ochs, 1996, p. 20-21).

Many digital storytelling practitioners also challenge the power dynamics inherent in media-making strategies that send trained “professionals” into communities to extract and construct stories without adequately examining ethical and other issues (see, for instance, Barnouw, 1993; Servaes, 1996; White, 2003). In essence, the process of making media, with its potential to support reflection and skill building for participants, is just as important as the final media products.

Creating Space for Silenced Stories: The Silence Speaks Initiative
In 1999, I drew upon my experience in women’s health and community development work and my interest in oral history and documentary film to co-found Silence Speaks, a not-for-profit international digital-storytelling initiative offering a safe, supportive environment for telling stories that too often remain untold.[1] Our goal is to create spaces for bearing witness and nurturing individual and group transformation. The guiding vision is to listen deeply and encourage participant involvement in collective action to support justice. We emphasise work with youth and adults who have been denied the power to influence decision making that affects their lives, such as those who live in poverty, survivors of violence and trauma and those who face social stigma due to HIV and AIDS or other chronic health conditions, etc. The stories they tell are shared in training, community organizing and policy advocacy arenas to promote global health and human rights.

Silence Speaks holds that “feminists must seek to transform ‘the inner world’ of bodily experience, psychological colonisation and cultural silencing, as well as the outer world of material social conditions” (Thornham, 2000, p. 8).

In our years of doing this work, we have seen how digital storytelling can serve as a means through which individuals are able to reflect on the extent to which material circumstances and interior processes and motivations jointly shape their lives. Silence Speaks encourages this reflective process by inviting the storyteller to step into a position of power and authority to articulate a story that “talks back” to or resists dominant discourses about gender, health or trauma—even as it may inevitably also reflect them. Depending on geography and historic moment, these discourses tend to shift back and forth between narratives that are either problem-saturated and oppressive or relentlessly upbeat, thus eluding the complexities of women’s and men’s lives.

Silence Speaks processes also echo Brazilian educator Paolo Freire, who believed that the development of critical consciousness, a precursor to action for social change, must begin with close examination of one’s own experience in an unjust social and political context (Freire, 1970; 1992). Our role as Silence Speaks facilitators is to help workshop participants critically analyse their lives and situate them within broader historical frames. Rather than appearing to document isolated incidents or reinforce negative stereotypes about categories of people, a set of stories created in a single workshop can instead weave together a collective social story of struggles for health and equality within a given context. The approach has proved especially relevant in Sub-Saharan Africa, where historic legacies of media exploitation and questions about visual and narrative representation continue to reverberate for journalists, filmmakers and those engaged in community development and gender equity work.[2]

A Plea to “Learn From My Story”: Ugandan Women Speak About Obstetric Fistula
In August 2007, Silence Speaks expanded its work in Africa, through a collaboration with the ACQUIRE Project, an international reproductive health and family planning initiative led by EngenderHealth. Among the myriad health issues affecting African women, gender-based violence and the gendered dimensions of the HIV and AIDS epidemic have taken centre stage in the media. The problem of obstetric fistula has received comparatively little coverage in print media or television news and has only recently been the topic of several widely-released documentary films.[3]

Obstetric fistula is caused by obstructed labour—without timely medical attention and a caesarean section, the pressure of the baby’s head against the mother’s pelvis cuts off blood supply, causing tissue to die and a hole to form between the mother’s birth canal and the bladder and/or rectum. Chronic leaking of urine and/or faeces results, and this leads families and communities to ostracise and isolate women with the condition (Miller, 2005; ACQUIRE web site, 2008).

The problem was eradicated decades ago in countries with adequate health infrastructure. Yet it persists in much of the world. EngenderHealth, through the ACQUIRE Project, works with national governments and other local partners in Africa and South Asia to address fistula. The ACQUIRE approach is holistic: It works with stakeholders at the facility and community levels to:

• Prevent fistula from occurring in the first place;
• Increase access to treatment and counselling for women with fistula; and
• Provide rehabilitation services that enable affected women to reintegrate into their communities.

Successful public health media campaigns have shown that visual media can play a vital role in educating communities, health practitioners and policymakers and in supporting focused advocacy for action and change (Wallack, 1996).

ACQUIRE staff working in New York and Uganda recognised the potential usefulness of developing media tools to highlight the plight of women suffering from fistula and document the realities of their lives. They were less interested in lengthy films, which cannot be shown effectively in training or at community events. They also understood that the sensitive nature of fistula warrants the use of an alternative to traditional media production practice, which can be intrusive and leave people with a sense of having been exploited.

In 2006 and 2007, ACQUIRE and its Uganda partners engaged Silence Speaks to design a project that would capitalise on digital storytelling’s ability to open people up to sharing intimate details about their lives in digital video format.

We would be a group comprising only women, unusual for a media production initiative (often women take leadership in communication and group process and men the equipment). But we understood that power dynamics embedded within differences of race, class, language and culture would influence relationships, stories and representations developed. We acknowledged from the outset the importance of remaining mindful about how these dimensions of identity would play out in the establishment of meaningful connections among facilitators, interpreters, workshop supporters and participants.

The workshop process that we developed differed from standard digital storytelling curricula in several ways. First, we realised that we would not have access to computers and would therefore not be able to teach the participants hands-on computer skills. We wanted, nonetheless, to include as many participatory components as possible. We decided to integrate photography and drawing into the project. Second, we created a unique way to bring the women’s orally-shared stories to life—as audio recordings. Finally, we added various group processes and activities to mediate language and cultural differences and increase the therapeutic aspect of the workshop. This helped us to make concrete our belief that collective storytelling and witnessing, if done with sensitivity, can transform people’s relationships to the past and reshape their sense of possibility for the future.

Recruitment and Preparation
It was not a simple matter to identify and confirm women to participate. ACQUIRE’s local partners at Kitovu Mission Hospital went painstakingly through patient records to draw up lists of women who had undergone fistula repair in the past few years and who might potentially be willing to reveal stories from their lives. Kitovu staff then conducted field visits to remote villages to talk with women, explain the project, describe what would happen at the workshop and assess interest. The staff took care to assure prospective storytellers that all transportation, accommodation and meal costs would be free of charge. In the end, rather than the anticipated eight storytellers, we worked with a group of eleven women, eager and ready to share their lives.

In many digital storytelling processes, participants search through their own personal photographic archives for images with which to illustrate their narratives. Fistula participants are unlikely to possess such archives, due to economic constraints and lack of access to cameras. We identified Photovoice (Wang, 1994; 1998) as an ideal method for assisting them in capturing images from their lives. Not only would adapting Photovoice strategies into the digital storytelling process generate photos for use in the stories, it offers basic training and skill-building in a form of media production, allows the women to participate directly in the creation of visual content and gives them something tangible to take away, in a setting where offering DVDs would be irrelevant, as none of the women has access to electricity at home.

Caroline Wang, originator of Photovoice, describes it as “a participatory action research method by which people create and discuss photographs as a means of catalysing personal and community change” (Wang, 1998, p. 75).

Unlike community photography projects, which uncritically position participants as “artists” without questioning the extent to which they do or do not stand to benefit from their production of images (Ballerini, 1995), Photovoice’s goal is to bring problems and issues affecting a community to the attention of key leaders and decision makers through the use of photographs. This view of media production fits perfectly with our vision for the fistula digital storytelling project. Instead of planning an exhibition of photos as an endpoint, however, we would incorporate the participants’ photos into their digital stories, allowing them to “show” details of their stories that might not emerge in the voiceover narrations.

As a first step, ACQUIRE staff in Uganda brought the participants together for an orientation, where they watched sample health-related digital stories by women from Swaziland, Lesotho and South Africa, were supported in sharing summaries of their fistula stories and had the opportunity ask questions about the workshop. Most importantly, they were each given a disposable camera and shown the basics of camera use.

ACQUIRE staff urged participants to take pictures of their homes and villages, to provide a sense of where the stories take place. Staff cautioned the women to obtain verbal permission from people whose photos they wished to take/include. The orientation was conducted with the assistance of interpreters, in the participants’ languages—either Luganda, Runyankore, or both.

Workshop participants review the photos they took to illustrate their stories. (Photo by Katie Tell.)

Perhaps most poignant of the images taken by the women are repeated photos of beds and bedding, literal reminders of years spent contending with leaking urine—these shots suggest that not even at night, in the comfort of sleep, can they relax and forget about their condition.

Story Development, Recording and Editing
Digital stories are often developed through a writing process. But because few of our fistula workshop participants know how to write, and because we need to work entirely through interpreters, we developed and trained our team of interpreters on an alternative approach.

We chose not to interview the women for two reasons. First, we felt strongly that an interview process, whether audio or video, if done too soon during the workshop, would intimidate the women and make them overly conscious of the end product instead of affording them the chance to simply be witnessed, free of constraints and immediate expectations. Secondly, conducting interviews, whether audio or video, and subsequently piecing together stories from what the interviewee has said, takes much more time and financial resources to do well than what we had available.

Instead, we adapted the tradition of narrative medicine (Charon, 2006), which invites the health practitioner to attend closely to the pain (physical or emotional) being shared by a patient and to co-construct a narrative about that patient’s life story, thus giving rise to an affiliation between the two which is essential to the process of healing (Marshall-Clark, 2005). Although we are not health practitioners per se, the method seemed useful to our process, which demanded both presence and a sensitive way to collaborate on story development.

As with the orientation session, the entire workshop was conducted with the assistance of interpreters.

Workshop participants get to know each other during an icebreaker activity. (Photo by Katie Tell.)

After leading a series of introductory icebreaker activities to relax participants and give everyone a chance to begin to know one another, we facilitated a story-sharing session, during which each woman takes a turn standing before the group and telling her story. At the close of each story, we all applaud to acknowledge the storyteller’s courage and make it clear she had been truly heard.

An interpreter, participant and workshop facilitator discuss story content.
(Photo by Katie Tell.)

After the story-telling session, we work with ACQUIRE staff and the interpreters to discuss the story content and make notes on what might be added or omitted to ensure that the finished pieces are a manageable length (two to four minutes long, or 300-400 words). Our choices about what to cut and what to add are based on a desire to honour the perspectives of each woman while also drawing out important themes and avoiding duplication of issues across the entire set of stories.

Next, the interpreters meet with the participants in groups of two or three and review the suggested edits with them. The interpreters take time and care to explain the edits and worked collaboratively with the women to add specific bits of dialogue, poignant details and useful public health information. Finally, we record each story directly into a laptop.

Putting the Pieces Together
Once the story recordings are finalised, we generate additional visual material, and assemble draft videos to screen. In addition to shooting photos and video clips of the women in a variety of environments, we build in an opportunity for them to produce drawings themselves.

Drawing by a participant, featured in her story

Drawing offers the participants a chance to represent visually key moments in their stories. It also allows for nonverbal communication that further transcends language and cultural differences and enables the women to identify with one another’s experiences and share those experiences with interpreters and workshop facilitators.

While we scanned drawings and photos into the computer and assembled rough edits of the stories, the women went as a group to visit Kitovu Mission Hospital, where they had been treated for fistula. There, they displayed their new confidence in breaking the silence that typically surrounds the topic. They provided advice and support to women awaiting their own fistula surgeries.

A workshop participant shares her experience with women awaiting fistula repair at Kitovu Mission Hospital. (Photo by Katie Tell.)

When the women returned to the workshop, we completed the four-day process with a celebratory dinner and evening screening of the draft digital stories. The women were visibly moved to see and hear themselves in video. Those involved in facilitating the workshop were deeply touched by the women’s gesture of thanks—performing traditional songs of praise and gratitude.

A Cumbersome but Effective Process
Messy bits of the process are unavoidable. Our interpreters were inexperienced in that role, and they occasionally lapsed into speaking on behalf of the women rather than simply voicing exactly what was being said. This is a challenge to story development, which is most powerful when it can rely purely on vernacular speech.

As nurses, the interpreters occupy a very different class position than that of the participants and tend to make assumptions about what the women need to hear from us, as facilitators. We could not always ensure that our comments and instructions were being accurately conveyed, but this is unavoidable when working across languages. Consequently, we must make last-minute edits on the fly.

Although our process is somewhat cumbersome, it is very effective on both a therapeutic and technical level. Working in the narrative medicine genre, which “insists that the narrative of the body—damaged, violated or chronically in pain—be included in the dialogue about and within the self” (Marshall-Clark, 2005, p. 269), enables us to co-construct meaningful stories with participants rather than about them.

Because we allow for multiple iterations of each story and multiple opportunities for feedback, discussion and validation, the participants feel a high degree of ownership of, and investment in, the narratives. The incorporation of play and get-to-know each other activities, as well as the decision to involve only women on the teaching team, create strong bonds across class and culture.

As we had hoped, the entire process of creating photos, witnessing the re-telling of one another’s stories and speaking out publicly does enable the women to reflect on their own lives, achieve a sense of validation about fistula experiences and express the desire to become advocates for change in their communities.

On the final day of the workshop, ACQUIRE staff facilitated a debriefing session so that the participants could share their feelings about the process. The comments were overwhelmingly positive. Several of the women said the workshop had made them feel less isolated and alone, with their fistula. One said, “In the past, I thought that I was the only one suffering from this problem, that I was alone. Now I know that many people have the same problem.” Another stated, “In the village, I didn’t know of others with this problem or how I got the problem. Now I have become united with others …,” and a third simply said, “I am not alone as I thought I was before.”

Participants also said they had learned more about the causes and implications of obstetric fistula. While basic health education was not an explicit objective of the workshop, our experience with the fistula project suggests that future efforts should integrate key information about health and well-being into the process. For instance, one participant said, “I got to learn and have a new experience. In the villages, people are ignorant about fistula. Now we’ve learned about the condition, we are not the same as we were before.” Another said, “Now I understand the causes of fistula, from these stories.”

Most of the participants voiced a strong to desire to spread the word about prevention and treatment, suggesting that digital storytelling offers great potential as a starting point for building leadership skills among women and training them as peer health educators. One participant remarked, “From today onwards, I will tell everyone what to do if they have this problem. … I am going to spread the news about how to prevent fistula and what to do if you have the problem.” One said, “I will continue to spread the word that women must deliver in the hospital,” and another remarked, “This has been extremely informative. I can now go out and give health education about the condition.”

Finally, some of the women said the workshop had given them a sense of being people who matter, who are able and entitled to speak out. One said, “It has been a great experience to stand in front of people and tell my story. I am not as shy as I was before.” Another stated, “I feel well developed now … when I first had fistula, I felt useless. Now I feel confident, that I can be somebody in the community.” A third shared that, “It has been a great experience learning how to be firm in front of other people. I can now communicate better with people in the community,” and a fourth said, “I have a sense of understanding that the world knows about us, that our problem will be known nationwide, and that many people want to help us.”

The workshop participants, together with facilitators and ACQUIRE staff. Author Amy Hill is at lower-right. (Photo by Hotel Brovad staff member.)

What the Stories Say and Who Will Listen: Hopes for Change
The collection of 11 digital stories created in our workshop recount hardships and celebrate achievements related to the participant's daily struggles with pregnancy, loss and relationships, as well as their search for safety, acceptance and dignity. The stories both confirm and contradict what many within the public health sector consider to be common knowledge:

• Women with fistula are often rejected by their families and forced to live in isolation; and
• Reliance upon traditional birth attendants and healers continues to complicate efforts to promote hospital delivery.

Many of the women revealed strong agitation as they told how they actively sought healthcare but were deterred due to the realities of poverty. Sifa said:

When I got pregnant, I went for my ante-natal checkups. The health workers told me to go to a hospital when I was due, but my husband gave me money and told me to go back to the village to deliver. The day I started having labour pains, I told my older sister I wanted to go to the hospital. I had given her my money for the expenses, but she had already spent it on other things. So we walked to the home of a traditional birth attendant instead.

Mary added another dimension to the challenges of delivering in rural areas:

I got the problem of leaking urine from my first pregnancy, in 1985, when I was 20 years old. I had obstructed labour, so I could not deliver on my own. I failed to give birth after being in labour for four days. This was during the time of the war that brought Museveni into power. I looked for a place to give birth, but I couldn’t find one—there was too much gunfire.

Mary’s mention of the civil war situates the story in a historical moment and points to the ways in which structural violence intersects with the daily realities of women’s lives. Mary went on to display incredible persistence in seeking a cure for her fistula:

I saw three different doctors but nothing helped. I was given appointments for operations, but didn’t have any. I heard there were doctors in Tanzania helping women like me. When I went there, they had already left. At a local hospital, I had an operation but didn’t get well. I came back two more times, but I didn’t fully get well. Although I am not yet healed, I am better than I was at first.

Mary is one of several participants who still suffer from the problem but who nonetheless were eager to share their struggles and find connection and solidarity with peers.

The women did not share unanimously the belief that fistula patients are always abused or rejected by their male partners. Several of the participants did endure such experience, but an equal number told another story. Irene, for instance, said that her husband was supportive from the start:

The doctor never told me what was wrong with me. My husband spent a lot of money on medicines, but nothing helped. One day a car stopped by the roadside near our home. They were people looking for women who were leaking; they told me there was treatment and gave me a day to go there. The villagers told my husband not to let me go, but he said he’d pay for my cure. I love my husband for being patient with my sickness.

Similarly, Rose’s husband refused to bow to community pressures. Rose says:

People around me had lost hope, and my in-laws almost chased me away. Even my mother, when she saw how sick I was, she abandoned me. But my husband was loyal and stayed with me.

Drawing by Rose, featured in her story.

Irene’s and Rose’s stories contradict the idea that men are unsupportive and present an important--and alternative—positive media portrayal of African men.

The stories are available for viewing on the Web, where they are filling a media gap about how women themselves experience the problem of fistula and what they go through to obtain treatment.[4] Yet their small scale, their attention to particular struggles and their public health relevance demand that they be seen locally. To this end, the stories are being shared in Uganda through ACQUIRE’s ongoing training and technical assistance efforts to educate providers, counsellors, prevention educators and health policymakers charged with establishing gender equitable and accessible health systems in the country.

Several of the stories were screened at a workshop focused on the development of a curriculum for fistula prevention and management for nurses and midwives. According to Dr. Isaac Achwal, technical/medical consultant with ACQUIRE, senior health personnel present at the workshop were “taken by surprise and became emotionally involved.” Achwal reported that one health worker said of the stories, “These are too real and humbling. I never knew that these women go through these kinds of experiences” (email communication with Carrie Ngongo, 2008).

What does it mean to say a person’s experience is “too real”? To me, the comment illustrates the vast gap that too often exists between health professionals and patients and suggests that the fistula workshop methodology offers women’s community media practitioners a way to address the indifference that so often accompanies collective suffering. Like oral history, this form of digital storytelling “requires that the act of telling, and the act of hearing, always be followed by the shared act of interpretation that illuminates the historical or political sources of injustice and also reveals one’s own responsibility in the face of it” (Marshall-Clark, 2005, p. 269).

Our hope at Silence Speaks and ACQUIRE is that viewers at every level will come away from watching the stories not only with greater compassion for women facing fistula, but also with a commitment to getting involved in whatever way they can—as a community member, health provider or policymaker—to ensure this completely preventable and completely gendered health condition is soon eradicated worldwide.

Special thanks to the 11 women who so generously shared their fistula stories as part of this project. Thanks also to Kitovu Mission Hospital, Masaka, Uganda; EngenderHealth staff in Kampala and New York; China Ching; and Katie Tell.

References

ACQUIRE project web site, www.acquireproject.org, 2008.

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Burgess, J. (2006). Hearing Ordinary Voices: Cultural Studies, Vernacular Creativity and Digital Storytelling. Continuum: Journal of Media & Cultural Studies, 20(2), 201-214.

Bruner, J. (2004). Life as Narrative. Social Research: An International Quarterly of Social Sciences, 71(3), 691-710.

Charon, R. (2006). Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press.

Centre for Digital Storytelling web site, www.storycenter.org, 2008.

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Marshall-Clark, M. (2005). Holocaust Video Testimony, Oral History, and Narrative Medicine: The Struggle Against Indifference. Literature and Medicine, 24(2), 266-282.

Miller, S., et. al. (2005). Obstetric Fistula: A Preventable Tragedy. Journal of Midwifery and Womens Health, 50(4), 286-294.

Ngongo, C., EngenderHealth Fistula Program Coordinator. Personal email correspondence, October, 2008.

Ochs, E., & Capps, L. (1996). Narrating the Self. Annual Review of Anthropology, 25(1), 19-43.

Servaes, J. (ed.) (1996). Participatory Communication for Social Change. Thousand Oaks, CA: Sage Publications.

Thorne, A. (2000). Personal Memory Telling and Personality Development. Personality and Social Psychology Review, 4(1), 45-56.

Thornham, S. (2000). Feminist Theory and Cultural Studies: Stories of Unsettled Relations. London: Hodder Arnold.

Wallack, L., & Dorfman, L. (1996). Media Advocacy: A Strategy for Advancing Policy and Promoting Health. Health Education & Behavior, 23(3), 293-317.

Wang, C., & Burris, M. A. (1994). Empowerment through Photo Novella: Portraits of Participation. Health Education & Behavior, 21(2), 171-186.

Wang, C., Yi, W., Tao, Z., & Carovano, K. (1998). Photovoice as a Participatory Health Promotion Strategy. Health Promotion International, 13(1), 75-86.

White, S. (ed.). (2003) Participatory Video: Images That Transform and Empower. Thousand Oaks, CA: Sage Publications.

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