2 Prioritizing the Well-Being and Dignity of Participants in Documentary Films

Madison Fearon

Documentary films are an important part of the wider media environment but one thing that sets them apart from other types of films is the specific care necessary when producing stories about real people and their lived experience. One way in which documentarians do this is by prioritizing the needs and well-being of the participants of the film. The history of documentary filmmaking is marked by exploitation and extractive storytelling, but there is growing awareness and demand for prioritizing the needs and well-being of documentary participants. As Childress and Brown (2020) explain in “The Documentary Future: A Call for Accountability,”

“[T]he golden age has…revealed something rotten at the core of the documentary film industry: an entrenched culture of entitlement and imperialist impulse on the part of filmmakers seeking to tell the stories of communities that are not their own, advancing disempowering narratives about marginalized communities—and all for personal gain.”
–Sonya Childress and Natalie Bullock Brown

To confront this entrenched culture and contribute to building a more equitable and inclusive documentary practice, a group of documentary educators, filmmakers and scholars, called the Documentary Accountability Working Group (n.d.), developed and promoted a set of “values, guiding principles and ethics that inform the practices of filmmakers, and shape their relationship to the story, the participants, the audience, funders and other stakeholders.” This framework includes a call to “prioritize the needs, well-being, and experiences of people associated with your film.” The Working Group describes this value in these terms:

“Typically, the director controls most elements that shape the experiences of the crew and participants. Consider the ways that you and your team can cede and shift power to ensure that the production experience of your participants and all production and crew members is healing, empowering, and ultimately fulfilling. By assuming the role of interpreter and director of a particular story, you have the opportunity to prioritize the needs, wellbeing, dignity, and experience of all those associated with your film.”
–from the Documentary Accountability Working Group

This chapter highlights two documentaries that stand out for their remarkable effort to center participants’ needs and well-being: Dick Johnson is Dead directed by Kirsten Johnson (2020), and 5b directed by Paul Haggis and Dan Krauss (2018). With this value at the core of these documentaries, the audience bears witness to two different ways that documentary makers enact this value. The first way that this value is demonstrated is by focusing on the filmmaker and looking at the struggles and outcomes of situating the needs of your participants as the priority. The second is the participants themselves serving as caregivers and ensuring their patients’ dignity is upheld and centered in the documentary-making.

Kirsten Johnson and Dick Johnson hugging.
Photo by Jay L. Clendenin, from https://www.latimes.com/entertainment-arts/awards/story/2021-01-04/dick-johnson-is-dead-kirsten-johnson-documentary

In the film Dick Johnson is Dead, Johnson (2020) takes the audience behind the scenes and turns the camera on her own family. The main focus of the film is her father Dick Johnson, who is struggling with the effects of dementia. The father and daughter grapple with the facts of his illness by together imagining and acting out different ways he might die. They cope with his deteriorating health and prepare themselves for his death by facing it head-on, acting it out while also working on a film project together in the limited time they have. In an interview featured in Sam Briger’s (2020) “Filmmaker Faces Her Father’s Mortality By Staging His ‘Death’ Again And Again,”  Johnson reflects on a particular scene staging her father’s funeral: “[W]e did the funeral and I realized like some part of me had completely convinced myself if we did the funeral really, in the church with my dad’s friends he would never die.” The pair wanted to create something together, playfully confronting the sad and looming reality, and structuring a process designed to ensure her father was engaged meaningfully as a collaborator in his daughter’s filmmaking practices.

For the filmmaker, this is especially important because her mother also suffered from dementia and in her earlier filmmaking, Johnson regrets how she represented her mother’s illness on film. In Cameraperson, Johnson includes shots of her mother who had a more progressed form of dementia than her father. In that film, it isn’t always clear that her mother understood that she was being filmed. In an interview in Sean O’Hagan’s (2016) “Film-maker Kirsten Johnson: how I betrayed my mother,” Johnson suggests that “it may not be evident to everyone who views it, but, as it pertains to my relationship with my mother, this was a profound act of betrayal.”  Johnson is upset that she used the footage because her mother could not consent to be filmed. After all, she did not understand what was going on due to the dementia. This experience informs Johnson’s care in filming with her father. The film allows her to portray the idea that even though death is a given, alongside profound sadness, there is a celebration of her father’s life and their caring relationship.

Kirsten Johnson and crew preparing a scene with Dick Johnson laying on street.
Photo from https://www.npr.org/2020/09/30/918129488/filmmaker-faces-her-fathers-mortality-by-staging-his-death-again-and-again

Throughout the film, Johnson, her father, and the crew work out, talk through, and enact the different scenarios of Dick Johnson’s death. This invites the audience to witness how Kirsten Johnson treats her father while filming. Throughout the film, we see her ensuring that her father knows what is happening, has agency in participating, and is comfortable while being filmed. After every scene included, she also makes sure that her dad is resting as she sits with him and they talk, sometimes about the film process, sometimes about life generally. This process enacts care and respect for the dignity and agency of participants in the documentary. One example of the care that she is exhibiting is during a scene where her father’s death occurs on a construction site when a large heavy beam swings and strikes him in the head. In this specific shot, they are using fake blood.  Before the enactment begins, while the crew preps Dick Johnson in the trailer, father and daughter talk through what is going to happen. Kirsten Johnson assures him that the blood they are using is fake, and tells the crew and everyone involved in the film to make sure and refer to it as fake blood because her father seems particularly hesitant when first presented with the idea. There is a heightened sense of awareness among the crew that her father is expressing wariness and concern. Once the filming begins, her father is supposed to walk down the block and get hit by a beam carried by a construction worker. After he is hit, he is leaning on a fire hydrant with the fake blood dripping down his face and neck. Johnson recognizes on her father’s face (and on camera) an expression of discomfort and upset.  He tells his daughter that the fake blood is cold and wet and that he doesn’t like it.  As soon as he says this, the filmmaker stops the enactment, but the camera is still shooting and captures Johnson turning to care for her father and ensuring he is safe and supported. The support she gives to her father is extremely important. She tells her crew to stop the scene and then immediately walks over to her father to support him, prioritizing his needs above all. She asks him questions, comforts and tries to calm him. In this moment, the imaginative project of staging various forms of dying gives way to the relationships, care and respect that are centered in the film.

Johnson’s explorations of mortality, illness, grief and dark humor are very different from the second film considered in this chapter, 5b, a documentary about the AIDS epidemic in the 1980s and ’90s and the homophobia that surrounded the disease when it first started to spread. This film also prioritizes the needs, experiences, and well-being of its participants. Specifically, the film focuses on the nurses and their relationship with the patients in the first AIDS ward that was created at San Francisco General Hospital. In this film, the audience is shown two types of care and the act of prioritizing needs: the first is for the nurses who are telling their stories of what it was like to work in the first AIDS ward, and the second is the care and compassion that the nurses gave to their patients during that time. In an interview with one of the doctors who worked on the ward, Dr. Paul Volberding, we can see the closeness and care between the nurses and their dedication to their patients’ well-being.

“It was a family. The physicians, the staff and the clinic and in the inpatient unit — we all worked so closely together because those were our patients. As physicians, those were our patients. And we were on the unit every day seeing our patients, and it was, again, a very special group of people.”
–Paul Volberding

The filmmakers encountered criticism when it came to the idea of prioritizing the well-being of the nurse participants in their film, and in particular of the way they tell the story of one nurse, Mary Magee. Nurses on 5b encountered the emotion and discrimination surrounding the AIDS epidemic, and confronted with widespread ignorance about the disease and prejudice against those living with it. The film shows the audience that none of this stopped the nurses of ward 5b, who continued to care for their patients with compassion and respect for their dignity.  Each nurse interviewed on camera tells their own story about what happened and what they observed, with the exception of one nurse, Mary Magee.

Throughout the film, viewers learn that there was a nurse who contracted AIDS while working on the ward, but the filmmakers do not disclose her name, referring to her only as Jane Doe. Only later in the film, after building curiosity and suspense, is the nurse’s identity revealed as Mary Magee. Critics, filmmakers and scholars have scrutinized this creative decision for the way that it seems to make use of conventions of fiction film, building suspense and curiosity, followed by a big reveal. In reality, this was Mary Magee’s real-life story being shared, and this slow disclosure denies her agency in telling her story for the sake of a cinematic choice. After Mary Magee is revealed as “Jane Doe”, the nurse who contracted aids from getting stuck by a needle, we hear her version of the story. To ensure that her dignity and agency were respected, Mary Magee should have been able to tell her story truthfully, openly,  transparently, from the beginning. This one decision from filmmakers creates a stark contrast between how they treated some of their participants and how the nurses treated their patients.

In both films considered in this chapter, the filmmakers illustrate the importance of valuing and respecting the dignity of participants in documentary work. In different ways, the films attempt to avoid exploitative practices that have been common and unquestioned in the documentary industry. The family ties between Kirsten and Dick Johnson are shown through the film as father and daughter co-create the documentary journey together, with respect for each other’s boundaries and well being in the process. In 5b, we see a more traditional relationship between the documentarians and the participants but this did not change the fact that the nurses were given the agency to tell their own stories of extremely emotional and highly stressful situations. In both films, a beautiful story was presented while upholding respect and care for the ones to which the stories belong.


Childress, S., & Bullock Brown, N. (2020, August 6). The Documentary Future: A Call for Accountability. International Documentary Association. Retrieved April 19, 2022, from https://www.documentary.org/feature/documentary-future-call-accountability

Core Values for Ethical and Accountable Nonfiction Filmmaking. The  Documentary Accountability Working Group. (n.d.). Retrieved April 28, 2022, from https://www.docaccountability.org/values

Gross, T. (2019, June 26). 1st AIDS ward ‘5B’ fought to give patients compassionate care, dignified deaths. NPR. Retrieved April 19, 2022, from https://www.npr.org/sections/health-shots/2019/06/26/736060834/1st-aids-ward-5b-fought-to-give-patients-compassionate-care-dignified-deaths

O’Hagan, S. (2016, September 7). Film-maker Kirsten Johnson: How I betrayed my mother. The Guardian. Retrieved November 9, 2022, from https://www.theguardian.com/film/2016/sep/07/kirsten-johnson-cameraperson-film-maker-how-i-betrayed-my-mother


Recommendations for further reading and viewing:

K. Deutsch, “The Act of Seeing: Kirsten Johnson’s ‘Cameraperson,'” Documentary Magazine, Fall 2016.  https://www.documentary.org/column/act-seeing-kirsten-johnsons-cameraperson

Dick Johnson Is Dead | Official Trailer | Netflix

5B Film Official Website

5B Official Trailer – Presented by RYOT a Verizon Media Company