By Laken Brooks and Robin Lewy
Graphic medicine invites us to consider the reciprocal relationship that bodies have with literature. Just as artists maneuver and stage bodies in photographs or drawings, the artist and the reader use their bodies to compose and turn the pages. I cannot talk about graphic art without talking about the bodies represented in that art, the bodies that interpret and create that art. And perhaps due to my own chronic illness, when I talk about bodies, I immediately think about health and ability.
As a field, graphic medicine combines visual art and healthcare. An everyday example of graphic medicine at work is in a box of tampons. When I open a package of my favorite tampons, I see a simple comic printed on a foldout flyer. Each panel of this medical comic illustrates the process of inserting, removing, and then disposing of the product. While a tampon manufacturer could have communicated these steps exclusively with words or images, the interplay of image and text make this message clearer to the user. In this instance, graphic medicine empowers the reader to envision their own bodies as the ones pictured in the comic. The sequential images replicate a sense of motion across the page, modeling the motion of a person’s own body. When I was a teen, I found these graphic representations—albeit simple—both practical and radical. By following the steps in the comic as I inserted a tampon for the first time, I was able to minimize discomfort. Just as significant, these illustrations demystified my vagina and uterus, parts of my body that I had never seen in my youth (in person or in sex ed) and thus had never felt truly belonged to me.
Ian Williams, a comics artist and a physician, coined the term ‘graphic medicine’ in 2008 to refer to the ways that comics, infographics, and other image texts serve an important role in practical health communication. In the years since, other scholars and public health professionals have contributed a substantial array of materials to the growing field of graphic medicine.1 From disability narratives like Georgia Webber’s Dumb: Living Without a Voice to multilingual translations of medical infographics,2 graphic medicine remains a vital tool for those scholars and advocates who study visual rhetoric and the body.
While graphic medicine encompasses a wide variety of visual media, too few scholars have analyzed fotonovelas as a tool of health communication. What are fotonovelas, and why do they matter? Unlike illustrated comics, fotonovelas utilize photographs with accompanying voice bubbles. Fotonovelas, like comics, were not created exclusively as a medical outreach tool. The first fotonovelas captured popular scenes from movies. After originating in Africa, the fotonovela became especially popular in Mexico, representing television novelas.3 In the United States, one group in particular, the Rural Women’s Health Project, has transformed the fotonovela from its Mexican roots into a feminist health message. In these fotonovelas, women are the protagonists, the subjects, and the authors. The Rural Women’s Health Project is a health justice nonprofit organization that works with women and their families across North Florida, especially immigrants, farm workers, and people living in rural areas of the region. The Rural Women’s Health Project has used fotonovelas for 28 years to communicate topics like domestic violence, breast cancer, and more. The Rural Women’s Health Project team has found that the fotonovela form appeals to Latin American immigrants who may recognize the fotonovela style as a familiar pop culture medium. Furthermore, this medium provides a valuable opportunity to involve community members to participate as coauthors, actors and the primary source of distribution of the printed fotonovelas in their communities.
For the Rural Women’s Health Project, the fotonovela is more than an awareness or educational tool. The fotonovela can help raise an individual’s self-identification of risk of different health issues. Photographs help community members relate to the health information on a personal level as readers can identify familiar faces and bodies in every panel. The Rural Women’s Health Project has found that readers may be more likely to consider the impact of health or social issues in their own life when they can associate with the characters, especially when there are faces that represent some parts of their own identity. This visual representation is especially impactful when addressing stigmatized conditions like HIV and familial violence.
To learn more about how fotonovelas are shaping health outreach in Florida, Laken Brooks, a PhD English student at the University of Florida, spoke with Robin Lewy, the Director of Programming at the Rural Women’s Health Project. This interview is rooted in the context, space, and place of North Florida, as the Rural Women’s Health Project has spent decades localizing the fotonovela form. Nonetheless, other advocates across the United States have also leveraged the fotonovela as a health communication tool.4
Laken: Why do you think that the fotonovela is such an effective health communication tool in this region of Florida?
Robin: If you go back 30 years, we did not have cell phones. The internet was still just in its infancy. We asked ourselves, “how do we communicate with a population that has no media connection, has no immediate mechanism for accessing information?” We knew that the communities that we were serving experienced lower levels of literacy and so we really believed that we needed to be using tools that would be most responsive. And that’s really how we identified the fotonovela as a tool to use.
Fotonovelas were certainly being used in other places within the country at the time—mostly California, Texas, maybe up in Washington state where there were just some really motivated bilingual and multilingual health groups, many of which were associated with universities.
We recognized that in our community, the information we published needed to include direct messaging and to meet some readers’ lower literacy needs, which doesn’t mean stupid; it just means super clear.
We really have always worked off of three key concepts: realistic solutions to real problems, modeling those behaviors, and the concept of “each one, teach one.” So when we created our vision of the fotonovela, it was important that these concepts lead us in every story.
When we developed our first fotonovelas, they were about HIV testing, prevention, and treatment. That was 28 years ago, in the early part of the HIV epidemic. There was not much discussion about the role of women in HIV transmission or actually acquiring the disease themselves. And that’s what we wanted to address in our fotonovelas, to show the people in the communities we served about HIV. The community craved reading anything in Spanish. The fact that the fotonovelas had photos and the novela style used in Latin America made them very well received.
Laken: I didn’t realize that the first fotonovelas with the Rural Women’s Health Project were related to HIV awareness. The public misinformation about the disease was so dehumanizing to different patients. Your fotonovelas feature actual people, actual actors, and actual human bodies. I imagine that these fotonovelas were really humanizing in how they presented this topic in comparison to other public health information at the time.
Robin: What is important is the context, right? I was working in a prenatal unit. It was a mobile unit working in rural areas. The co-producers of these fotonovelas were women that were very much involved in HIV services here in Gainesville. This was a long time ago, when the stigma was even stronger. At that time the epidemic and information focused on white, gay men. Of the fotonovelas that we found that had been developed on the West Coast for the Latino community, women were presented as sex workers or the innocent women who contracts HIV from her husband, but stays by his side. There’s nothing innately empowering about these ideas. I mean, sex work is a whole different issue to discuss at another time, but those representations didn’t help the immigrant women in our community. So our first fotonovelas were modeling a health conversation steeped in the community reality.
To be honest, that HIV work is what has been a link for 30 years. Because you can’t talk about HIV prevention unless you can talk about reproductive rights, physical safety, domestic violence or intimate partner violence, and other conditions.
Laken: One thing I really loved about these fotonovelas is that the Rural Women’s Health Project invites different community members to participate in the creation process. Would you mind walking us through how you find these actors who are pictured in the fotonovelas? How do these coauthors help at every stage, from creation to dissemination, of these fotonovelas?
Robin: Almost all of our work is done in collaboration with other organizations. We work with community partners to pinpoint obstacles to people’s health in the area. These partners may be health workers, might be community leaders, or staff from the schools, migrant education, or farmworking women’s organizations. We also work with churches. These are the people who actually know their community and can identify community members that might want to be a part of our programming. Then we will use surveys and focus groups to find out more stories about their health experiences. And together with these community partners, we start to explore, ‘What are the concerns? What are the issues, the challenges, the stories?’
Then there’s the role of involving community actors. Each of our fotonovelas shows real people. Sometimes these actors are actually the original authors, pictured telling their own story. We have a piece that was written about sexual harassment in the workplace. We gathered information from a farmworker women’s organization in California, which was then reviewed by a group of women in our area who added in their experiences and stories. They wrote the story, and those contributors became the actresses in it.
We want these materials to resonate with the community members, so that when they look at that picture, they say, ‘wow, she looks just like my mother in law or my sister.’ We’re trying to use these fotonovelas to raise recognition, that these women in these fotonovelas look like me and that the health issues they’re facing may impact me, too. Because we’re trying to raise self-identification of risk, if these materials don’t look familiar or relatable, they don’t make any impact. So we never use models or professionals. We prefer to work with the community members.
Once the materials are completed and printed, we then distribute the novelas to the actors and writers. We give them multiple copies so that they can keep as many they like, but also to share them with their family and friends. Sharing their own health story means that they become informed experts on this topic.
Laken: Is there a particular example of a story or a situation where someone’s, maybe a patient’s or a community member’s, life was changed after reading a fotonovela?
Robin: One story that comes to mind is a sad one, but it’s an important one. We created a series of fotonovelas about early breast cancer detection. We worked in Kentucky and Florida, and we gathered a hundred and thirty-four perspectives about breast cancer. We took the completed novelas called Creando Nuestra Salud (Creating Our Health) to a plant nursery in Lake County, Florida. Our community partner convinced the owners of a plant nursery to allow the female workers to attend a one-hour session about early breast cancer detection, and workers would be paid to go to that class. We talked to around 35 women. Three weeks later, we got a call from our partner about one of the women who attended a session. The woman had called her crying. She had had a mass on her breast for several years, but she never knew what it was. We offered to help her go to the doctor to evaluate the tumor. All she said was, ‘Now I have answers. Now I know what this is.”
She died six months later. That typifies the injustice of limited health education and materials in languages other than English, health inaccessibility and late entrance to care. That’s what a simple fotonovela can do: open doors, provide information. The fotonovela is a tool. Fotonovelas might not always be life-changing, but the fotonovela can be powerful. These narratives resonate with readers because of the context in which you receive that story and how you can imagine yourself within that story.
Laken: If you think how the fotonovelas with the Rural Women’s Health Project have evolved in nearly thirty years, how do you see the fotonovela project evolving over the next five or ten years? What is the future of this graphic medicine project?
Robin: We started making fotonovelas because with immigrant populations, issues of stigma are very, very high. At times, immigrants have told us how they feel like they’ve been silenced in healthcare. And with our fotonovelas, we can offer community members the opportunity to explore issues as they feel comfortable. Actors can share their real story, can take on a new name for privacy, or can choose to portray themselves in a more anonymous silhouette format instead of showing their own face. The fotonovela gives community members the autonomy to illustrate their own health journey.
That’s the way in which we see that the fotonovela can continue to be used, even in times of digital technology, e-books, and social media. Not everyone in our community has access to the internet yet. And there’s still something valuable about sharing things that are physically printed and can be held in your hands.But most importantly, the fotonovela allows for community creation and communal storytelling.
Laken: What would you recommend for someone in a healthcare organization who wants to start thinking about using fotonovelas? How would you recommend that they can use this form of storytelling while having that authentic connection to the community?
Robin: The first thing is to make sure that the topic that you want to address is actually a topic that the community cares about and that you are inviting community members to write in their own voice, about their own experiences. The next element is also to assure that there is vetting of any technical or medical aspects of the story. You’ll want to make sure that, within the community’s way of conveying health concepts, that all health messages are factual.
As another piece of advice, no photoshoot has ever gone the way we thought it would. In our case, we work with community members that have kids, that have jobs. We go in with all the materials that we need. For example, I’m doing a photoshoot tomorrow. I went and bought clothes and props to take any pressure off of the community as they volunteer as actors. If I want someone to wear something different than what they have, I need to be prepared to provide that community actor with options. If we’re going to be photographing a scene where we’re cooking in someone’s house, I’m bringing the onions and the chicken.
Finally, make sure that the process is enjoyable, focused on process and on celebration. Celebration is an important part of our storytelling process in order to honor that these community members have claimed control over their own health stories and have chosen to share those stories with us and, ultimately, their community.
Laken: What can readers do to make sure this fotonovela work continues? How can they support this organization?
Robin: I would appreciate if people would take time to think about the value of testimonies and stories. Beyond religious testimony or from a personal perspective, testimony can be a concept for communal storytelling and a tool for power and change.
Laken: Is there anything that I haven’t asked that you would like to share?
Robin: I would like to articulate why we use the fotonovela versus a cartoon or drawing. The photograph is key to our health communication because of the actual features of the individual, the environment that they’re in, and the emotion that they show. The photograph provides the opportunity for community members to take control of the narrative by choosing how they want to represent their bodies in relation to the narrative—how they want to pose, where they want to insert speech bubbles near their heads, where they want the captions to sit in relation to their bodies in the panel.
Photographs in our fotonovelas provide a really revolutionary opportunity for community members to see themselves (literally and metaphorically) represented in health communication. And this is important because we believe strongly in a concept by the pedagogy scholar Paulo Friere: “the people must read their own reality and write their own history.”5
Notes
[1] Refer to the Graphic Medicine website at https://www.graphicmedicine.org/; Graphic Medicine Manifesto by MK Czerwiec, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, Scott T. Smith (2015); Taking Turns: Stories from HIV/AIDS Care by MK Czerwiec (2017); PathoGraphics: Narrative, Aesthetics, Contention, Community edited by Susan Merrill Squier, Irmela Marei Krüger-Fürhoff (2020); Graphic Reproduction: A Comics Anthology edited by Jenell Johnson (2018); RX by Rachel Lindsay (2018); Neurocomic: A Comic about the Brain by Matteo Farinella and Hana Roš (2013); Bitter Medicine: A Graphic Memoir of Mental Illness by Clem Martini, Olivier Martini (2010); and Graphic Medicine: Depicting Invisible Illnesses in Comics by Daniel Lipford (2017).
[2] Refer to Meredith Li-Vollmer’s presentation “Graphic Public Health: Comics for Health Literacy, Health Promotion, and Advocacy”: https://nnlm.gov/class/graphic-public-health-comics-health-literacy-health-promotion-and-advocacy/14535
and the public health language app “Protégete en tu lengua” made in Oaxaca by Ricardo Jiménez Jiménez, general coordinator of the Ñuu Ayava Collective, and the members of Young Language Ambassadors Elena García Ortega, Abigail Castellanos García, Gaby León Jiménez and José Antonio Orozco: https://oaxaca.eluniversal.com.mx/sociedad/jovenes-de-oaxaca-crean-app-para-compartir-informacion-en-lenguas-indigenas-sobre-la?fbclid=IwAR0JIGe6ZWMB402HxeBbJYr8TY36sxuGVVD6HW8LLu2Z2MUyz0xMJEoxNEM
[3] Refer to the Rural Women’s Health Project’s extensive resources and bibliography on the topic of fotonovelas: https://www.rwhp.org/fotonovela.html. Other sources about fotonovelas include Mexico: A Concise Illustrated History by John W. Sherman (2020), Twentieth-century Mexico edited by William Dirk Raat, William H. Beezley (1986), The Mexico Reader: History, Culture, Politics edited by Gilbert M. Joseph, Timothy J. Henderson, Timothy J. Henderson, Orin Starn, Robin Kirk (2002), Fotonovela Rosa, Fotonovela Roja by Fernando Curiel (2001), and Fabiola del Castillo’s “Pizcando Sueños: crossing borders” presentation at the Universidad de Antropolgía y Historia.
[4] Refer to Ramón Valle’s, Ann-Marie Yamada’s, and Ana Consuelo Matiella’s “Fotonovelas: A Health Literacy Tool for Educating Latino Older Adults about Dementia” (2006) and Leopoldo J. Cabassa’s, Gregory B. Molina’s and Melvin Baron’s “Depression Fotonovela: Development of a Depression Literacy Tool for Latinos With Limited English Proficiency” (2012).