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From the Instructor
As with the best arguments, the idea for Lauren Keslerâs essay came from a deeply personal place. An aspiring documentary filmmaker, she began with the simplest of questions: What documentary film needs to be made? Her answerâan autoethnographic film that gives ill children directorial power over their own representationsâwonderfully synthesizes the academic and the public, the theoretical and the practical. Lauren wrote this essay for our WR 150: âGlobal Documentaryâ seminar as part of the WR X Genre and Audience Cluster. Students researched documentary films that piqued their interest and then wrote on their topic in three different genres for different audiences: a research proposal, an academic research paper, and a public intellectual essay. Their topics spanned disciplines and the globe, from the decline of Chinese ethnic minorities to the rise of adjuncts in American universities. There is so much to admire in Laurenâs essay: its extensive research, logical organization, and overall originality. I particularly appreciate the gentle confidence and humor of her voice, even when working with a subject as tragic as this one. It is gratifying to see Lauren honored for her topnotch essay, which lays the groundwork for what will be a revolutionary docu- mentary. I await an invitation to the premiere. â Marisa Milanese WR 150: Global Documentary
From the Writer
I had often thought of making a documentary film about childhood illness in the traditional documentary format, with a film crew following and interviewing children. Eager to develop the project, I decided I would write my research paper for my WR 150 class âDocumentary Film: A Global Perspectiveâ as a proposal for this film. As I began to research films like Maidentrip and Born Into Brothels , which both put cameras into the hands of the subjects, I realized the possible benefits of allowing children with life-threatening illness to tell their own stories. From there I began research filmmaking as art therapy for ill children and found a major gap in the literature. With that, I knew I had a niche to fill. It was an inspiring experience to feel like I was actually contributing to the field, as opposed to just rewriting what has already been created. I am looking forward to developing this project further and am thankful for my experience in WR 150. â Lauren Kesler
Lauren Kesler
Prize Essay Winner
Painting the Real Picture: The Benefits
of Autoethnographic Filmmaking for
Children with Life-Threatening Illness
Nearly every media representation of pediatric life-threatening illness can be categorized in one of two ways. On one side, there is a fictionalized portrayal of life within the walls of a hospital, as seen in books and films like The Fault in Our Stars , which suggests that while a life-threatening illness is terrible, it will get you a cute boyfriend, sex, and a trip to Amster- dam. On the other side, there is the overly tragic view of illness: maudlin music, celebrities, bald children, and the concomitant plea for money for research hospitals on televised public service announcements. Both repre- sentations work to âoversimplify and misrepresentâ disease (Nuñez), invit- ing the question: What is the experience really like for the young people who live between the walls, wires, and monitors of childhood illness? Illness thrusts children and families into the foreign environment of a hospital. Here, children are taken from their regular lives and forced into one where pokes, prods, and questions from medical teams take priority over play and activity. Away from the normalcy of daily life, children face new fears about lifeâand sudden and confusing thoughts of death. A common way to help children cope with the experience is to encourage them to produce art while in the hospital. Tracy Councill, a professor of art therapy at George Washington University, argues that participating in art while ill âcan support communication between the patient, family, and medical team and assist families in finding a balance between talking about painful subjects and going on with lifeâ (78). While engaging in art, children are able to express their feelings and concerns in a way that is more comfortable for them than are interviews with therapists and medi- cal professionals. Cathy Malchiodi, an art therapist and clinical counselor,
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classifies art therapy as a beneficial communication tool, especially for children too young to fully explain themselves using words (16). While activities like drawing and painting are commonly discussed forms of art therapy, rarely discussed is filmmaking, specifically autoethnographic filmmaking. Autoethnographic filmmaking offers people an opportunity to cre- atively engage with their environment, represent themselves as they wish, and produce a tangible product that can be shown to a wider audience. With this in mind, I propose the creation of an autoethnographic film project for children with life-threatening diseases. Putting cameras into the hands of children will give them the ability to ask the questions, represent themselves, and look back at the footage to better understand their new world. The project will enable children to turn the gaze away from them- selves and their illness and explore their own curiosities, from interviewing their doctors to filming frightening exam rooms or their fellow patients. Unlike painting or drawingïŁ§which, once created, is often examined and interpreted by a therapist, leaving the child out of the processâallowing children to edit their own footage will let them do the interpreting and give them the opportunity to shape their footage in a way that is represen- tative of their experiences. Malchiodi defines medical art therapy in her book Medical Art Therapy with Children as âthe use of art expression and imagery with indi- viduals who are physically ill, experiencing trauma to the body, or who are undergoing aggressive medical treatment such as surgery or chemotherapyâ (13). This practice originates in the idea that children âuse art for self- expression, conflict resolution, and emotional reparationâ (16). For children with illness, experiences such as separating from parents, being bed-ridden, and losing weight or hair are all common. Patients dealing with such challenges can feel a sense of a loss of control and helplessness, which art therapy attempts to combat by turning children into âactive participant[s] in their health careâ (16). Art therapy works not only to distract or enter- tain children during their illness, but also to help them recognize that they have created something real and âtangible.â For cases of life-threatening illness, this art can become a type of âvisual legacyâ of their lives and some- thing that children, especially older adolescents, can choose to leave behind for their families as they anticipate their deaths (17).
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cess has been replicated by projects and organizations including Kids with Cameras (an organization founded by Zana Briski); ZoomUganda, which gave cameras to teenage girls in Uganda to document their lives; and the 2005 documentary Desire, which gave film cameras to teenage girls in underprivileged neighborhoods in New Orleans so that they could speak up about teenage pregnancy and other issues of concern (Rangan 151). The principal assumption informing autoethnographic filmmaking is that people are more open to talking on camera when they retain the power to represent themselves, rather than having a stranger interviewing them. This openness can be seen in the 2014 documentary Maidentrip , which was directed by Jillian Schlesinger but was filmed almost entirely by teenager Laura Dekker while on a two-year sailing journey around the world. What is important to note is that Dekker had no interest in hav- ing her story recorded and shown to the world, as seen in the film by her annoyance with the media and journalists interrogating her while at port. In fact, she agreed to make Maidentrip only after Schlesinger asserted a desire not to âmake a film about her, but make one with herâ (Kemmerle). By granting Dekker an active role in the production process, Schlesinger gave her a âlevel of respectâ and allowed her to have control over her own representation and the project as a whole (Kemmerle). Schlesinger explains in an interview with Tribeca that the freedom of representation she was given was âvery empowering to herâ (Kemmerle), and I would argue that it is likely the reason she agreed to make the film. It is crucial to consider the importance of the camera in projects like Maidentrip to better understand why filmmaking would be a beneficial form of art therapy for sick children. There is something about the mere presence of a camera that intrigues people, especially children, and inspires them to start filming. While no single explanation exists, Gerry Bloustien and Sarah Baker have extensively researched the concept as part of their autoethnographic projects with pre-teen and teenage girls, hoping to use the films to better understand the ânatureâ and âcomplexityâ of growing up (64). Through working with the girls, they began to understand the power that cameras can have in âtelling a story of the âself ââ (69). They explain how, as the camera developed technologically and became more compact and easy to use, allowing people to record with increasing ease, it has become both âvoyeuristicâ as well as âa means of controlâ (70). What most
Lauren Kesler surprised Bloustien and Baker was the allure that the camera possessed for the girls, simply by existing as a source of experimentation. The girls found that being able to represent themselves was exciting and more enjoyable than being filmed and questioned by professionals (71). Bloustien and Baker state that the camera has proven itself to be âa powerful tool for young people in their search and creation of that illusive and ultimately impossible âreal meââ (76). This search for the âreal meâ is perhaps simplified by the cameraâs unique ability to be turned on the filmmaker, both literally and figuratively, allowing the one filming not only to create compositions, but also to study the visuals and experiences (and themselves) when re- playing the footage. One of the most relevant pieces of information from Bloustien and Bakerâs research that can be transferred to a filmmaking project for chil- dren with life-threatening illness is the idea that the girls found filming themselves to be more engaging and less âdull and time-consumingâ than when questioned in an interview setting (71). This feeling would certainly resonate with children who spend hours a day being questioned by doc- tors, nurses, and family. If an external film crew were to enter a hospital in hopes of talking to sick kids, they would likely meet a wall of children unwilling to be poked and prodded by yet another group of strange adults. In contrast, an autoethnographic film project will allow the kids to have âan authoritative voiceâ (Bloustien and Baker 72) and assume the role of interrogator. The presence of the camera will, in this case, allow the chil- dren to do something that drawing and painting cannot do, which is to control the gaze. Whereas traditional art therapy relies on professionals watching the child and interpreting their work, autoethnographic film- making will allow the child to watch the professionals and their surround- ings from the position of an outsider. In doing so, children will gain the ability to see their world as others do, as the camera works to make, as Susan Sontag would say, âfamiliar things small, abstract, strange, much farther awayâ (167). By experiencing this distance, children will gain a new perspective on their illnessâand themselves. If filming themselves will turn the children into outsiders, what will happen when true outsiders are granted access to the childrenâs world? The idea of having the final films of the childrenâs shown to a larger audience outside of the hospital does raise some ethical questions. Should people
Lauren Kesler stand âusing film as therapyâ and will instead view films of this nature as âmanipulativeâ (128). This reaction is likely due to the discomfort audi- ences feel when viewing something that is so intimate it becomes âtoo personal,â and thus turns the camera into something âinvasiveâ rather than âan instrument of inquiryâ (125). Mark Ledbetter provides insight on the discomfort we feel when we view something we think we should not by noting that since childhood we have been trained ânot to lookâ at painful images (4). This has created a âneed to say that we did not see something,â as the word âvoyeurâ tends to have a bad connotation in our society (4). However, he goes on to argue that âwe are voyeurs by nature, and voyeur- ism is necessary to ethical encounterâ (4). In this way, while some viewers of a film about a child with life-threatening illness might say that we âshouldnât be watching this,â I would argue that it is for this very reason that we should be watching it. Discomfort does not mean unethical, and ânot watchingâ does not equate to ânot happening.â In addition, the consent process of this projectâpremised on col- laborationâis one considered by documentary scholars to be the most ethical option. Pryluck argues that âvoluntary informed consent in medical and social research is the protection of the physical and psychic well-being of the subjects,â that âsubjects should not humiliated by the experience,â and should not leave with âlowered self-esteem and social respectâ (26). Because in this project the children are the ones doing the filmmaking, there will be no question regarding the well being of the children partici- pating. No children will be forced into filming, and only those who are interested and properly informed of the project will take part. The key to this project is collaboration between the director facilitating the program and the children and families participating, a collaboration premised on the assumption that âthe subjects know more than any outsider can about what is on the screenâ (Pryluck 27). In this way, âcollaboration fulfills the basic ethical requirement for control of oneâs own personalityâ and we can be assured that nothing will be shown on screen that has not been approved by all of the film participants (28). The goal of this project is to show a personal and authentic representation of pediatric illness. It is a goal that cannot be completed by a fiction writer, marketing team, or film crew. It can only be achieved by granting the children an active and promi- nent voice in the construction of the film.
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Autoethnography is one of the most successful methods to enhance collaboration between children and filmmakers or researchers. This idea is emphasized in a program called Photofriend, which gives cameras to refugee children to tell their stories. The program seeks to gain information about the children for research into refugees but does so in a way that is âunobtrusive, respectful of childrenâs experiences of adversity, and enjoy- ableâ (Oh 282). The experiences of ill children are clearly different from those of refugee children, but there are parallels to be drawn as we compare two groups of children who find themselves in unfamiliar and frightening places. In regards to Photofriend, there is an approach of âparticipation and empowermentâ for the children being researched and a belief that children should be treated as âsocial actors rather than victimsâ (283). In addition, in accordance with the principle of âdoing no harm to children,â which includes asking questions that may be painful for the child, Photofriend found that taking pictures eventually resulted in children talking about their painful experiences âwithout being promptedâ (285). In this way, the research process became a safe environment in which the children did not feel pressure to say anything that they did not want to discloseâthe kind of environment that my project intends to create. Doctors, nurses, therapists, and families all want to better understand a childâs experience with illness and need the information to create better treatment plans for future occurrences of the disease. But sometimes the constant interviews and therapy sessions begin to feel too similar to the constant exams and medical procedures. Children are overwhelmed by the attention, inspiring emotional distress. There is a need to study the âvic- timsâ of pediatric disease, but there is also a need to remember that these research specimens are people who deserve a chance to share their voice. Giving children cameras to tell their story and express themselves will succeed in being a form of diversion and therapy for a child, while, when viewed by professionals and an outside audience, will also offer a useful insight into childhood illness. It is a mutually beneficial process that allows both sides to gain new and useful information about the world around them. It is art therapy, filmmaking, and research at its best and most ethical.
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Rangan, P. âImmaterial Child Labor: Media Advocacy, Autoethnography, and the Case of Born into Brothels.â Camera Obscura: Feminism, Culture, and Media Studies 25.3 75 (2011): 143â77. Highwire Press e-Duke Journals Scholarly Expanded Collection. Web. 20 Feb. 2015. Roston, Tom. âDoc Soup: What Happened To... Avijit from âBorn into Brothelsââ PBS. PBS, n.d. Web. 01 Apr. 2015. Sontag, Susan. On Photography. New York: Farrar, Straus and Giroux,
- Print. LAUREN KESLER is a member of the College of Communicationâs class of 2016, studying Film and Television. She would like to thank her parents for being a pediatrician and a nurse, so that they could pass on just enough of their passion for sick children to inspire her to develop this project. She would also like to thank Professor Milanese for believing in this paper even when Lauren came to office hours ready to âdestroy the entire thing.â Lauren would also like to mention that if you happen to be a film pro- ducer, she would love to actually make this movie, so please be in touch.
