Documentaries that use interviews with people with lived experience of mental health challenges and the mental health care system for advocacy purposes are very popular now–examples on YouTube include The Open Paradigm Project, PEERS TV and Daniel Mackler’s films. While these projects are effective means of educating the general public, sharing information in peer communities and reducing stigma, they aren’t produced by the story tellers themselves.
The Open Paradigm Project began as a response to the controversy around the release of the DSM-5. The tagline is “Stories of Hope from People Who Rejected Psychiatric Diagnosis”. It’s not clear who produces the videos, but they have a five-figure budget and partner with Mad In America. The videos are shot all over the US and Europe and include interviews and documentation of individuals speaking at public events such as protests and conventions. There is a little variation in terms of prompts that are used in individual interviews, but some interviews include personal photos from the subject. The voice of the person being interviewed or filmed stands on its own without any interpretive text. There are over 1,000 videos in this project to date.
PEERS TV is produced by the Alameda County PEERS (Peers Envisioning and Engaging in Recovery Services) program. Their YouTube station includes a weekly talk show and clips from presentations made by leaders in the peer movement. There are also interviews with participants in their programs and footage of workshops run by peers. The transition aged youth program also produces videos featuring interviews and workshops run by youth peers and a documentary called “Shine” that is based on interviews with them. All of these videos are documentary in nature and professionally produced.
Daniel Mackler is a former therapist whose films document non-medical mental health treatments from the US and Europe that have been found to be more effective than traditional medical model treatments. He captures the dynamics of each movement by filming collaborative meetings, then records detailed interviews with key leaders/practitioners and individuals who have taken part in each modality. Mackler uses interviews with people on the street in New York City to illustrate the stigma around psychiatric medications and mental health issues in the US, which he juxtaposes with the more humane, collaborative modalities his films explore. Mackler is present in his films as narrator, interviewer and subject, but the majority of the ideas are not his. When he was a therapist, Mackler supported clients coming off of medications and acted as intermediary with psychiatrists and primary care doctors. He uses terms like “shared decision-making” and “we” in his role as ally in peer communities. But he is the only person in the film who has control of the means of production, which places a lot of power in his hands. He distributes the films via his personal website and YouTube for no cost, and he also sells DVDs.
What would it be like for people with lived experience to produce and share our own stories? Current research in new media, health promotion and education are finding promising results in digital storytelling methods where small groups of individuals who share a common experience come together in workshops. The multidimensional facets of each individual’s experiences are discussed. These experiences are then represented in video projects to share with the storytelling circle, family members and the community at large. This is very different from being interviewed as a subject for a documentary or documented as a participant in a workshop and not having any part in the production of the finished product.
In 2014, I produced a first-person narrative in a 5-session class offered by Portland Community Media (PCM). I took the class with a friend and we interviewed each other for our pieces. We both focused on stories where our creativity and outdoor pursuits pulled us through difficult times. He discussed hiking the Pacific Crest Trail and how painting helped him recover from the physical and psychological pain of long days, and I discussed how I regained a sense of myself in three years of protracted withdrawal from benzodiazepines through my creativity. Neither of us had access to editing software at home, but now that we have taken the digital storytelling class, we have access to cameras and editing suites. It’s a great place to learn and share skills with others and is open to the public.
I was researching narrative and self-determination when I made my story and a lot of doors have opened for me from producing it. I have a degree in video production, but had been away from producing anything for a while. Putting together my digital story gave me a chance to showcase my skills while telling a story as it is emerging. This was a very difficult process, but putting my story out into the world was a huge step in getting my ideas and intentions clear within myself and with others.
In February 2016, I facilitated a digital storytelling project with members of the Early Assessment and Support Alliance (EASA) Young Adult Leadership Council entitled In Our Own Words, Sounds and Visions: EASA Young Adult Leadership Council. EASA is a statewide network of programs that help identify and support young people who are experiencing psychosis. The Leadership Council was created in April 2013 and consists entirely of young adults who have graduated from EASA. The film provides insight into experiences of psychosis through the stories, visual art and music of leadership council members. The project also highlights the importance of early assessment and support with recommendations for a national platform to guide early psychosis programs and transform the mental healthcare system.
I co-produced this project with one member of the leadership council. Our process for producing the film was akin to digital storytelling methods. Each person’s narrative was developed through a casual conversation with us (the co-producers). The framework for these discussions was the construction of a story of change which started with a struggle and reflection on that struggle. We then moved to what was learned from the experience and how that has affected what the storyteller is doing now. Finally, the storyteller described what they are doing now and what their hopes, dreams and goals for the future are. From our discussion, we built a shared understanding of the storyteller’s experiences, their feelings around these experiences and the personal meaning they carry as a result of reflecting on these experiences. From the themes we gathered in the initial conversation, we collaboratively developed guiding questions or prompts that we used when filming each person’s story. Overall, this method helped create a collective language across the varied narratives of the leadership council members’ experiences and a framework of inquiry that subtly interrogates mainstream viewpoints on psychosis and other mental health challenges.
I used my research on digital storytelling and the work I do with the My Life project to develop the framework for the collaborative narrative building process. My Life is a coaching and near-peer mentoring intervention with foster youth with disabilities. I have been coding video interviews of the yearly assessments for My Life for the last three years. The questions in the assessment are strengths-based and focus on accomplishments, goals, steps to reach a goal, strategies for attaining support from adults and stress management strategies. These kinds for questions create a narrative of change through the personal agency of the storyteller with support from adults and internal coping strategies. I thought this would be an empowering narrative for EASA graduates to explore.
We used the story of change model from digital storytelling methods to inform our approach to making meaning from the storytellers’ experiences of psychosis and the mental health care and criminal justice systems. Gubrium (2009) describes digital storytelling as a form of community-based participatory research based on the Freirian model that emphasizes the construction of stories as participants construct change in their lives. As a group, participants construct a shared reality. This reality is transformed into the physical form of digital stories, which in turn, offer individual participants a means of owning and being able to tell their individual stories. I also thought about how these stories could impact audiences because digital storytelling projects provide potential viewers with a more complex understanding of participant’s lives and the ways they choose to represent themselves.
My co-producer and I felt like it was important that we produce these narratives in a close and closed social circle without outside technical support in environments that the leadership council members were familiar with. This production process supports individual and group needs as they emerge within the process—not predetermined by anyone else. Framing of experiences in narrative form is a necessary part of making sense of experiences and retrieving them later in the form of memories. Davis and Weinshenker (2014) describe identity as “the enduring, sincere and significant first-person accounts of who we are that we tell ourselves and others.” (p. 55) In a story of change, putting a future vision one’s self into a digital story and presenting it as a finished object is a step taken toward embracing that new identity. The act of producing the story freezes it in time and externalizes it as a possibility to contemplate. This contemplation not only brings about pride in one’s work and hope for the future, but the video itself can serve as a tool to help the storyteller move in the direction they portray in their story just by sharing it with others. Screening and speaking about your story can lead to greater self-understanding, and a greater understanding of the social issues represented in the story by audience members.
We debuted the film at Peerpocalypse, which is a yearly conference for people with lived experience who work in the mental health field and their allies. Participants in our workshop asked if they could share the film with the peers, clinicians and young people they work with because they felt it portrayed a different viewpoint from “patient narratives” that are produced by clinicians. Clinicians at the workshop also asked to share the film with their colleagues and the young people they serve.
We also screened the film at a brown bag gathering at Regional Research Institute for Human Services. Viewers sent the following feedback:
“The film provided an authentic narrative of the lived experiences of individuals who experience mental health challenges. It provided the viewer with an understanding of the current state of science, policy, practice, and experiences of mental health services and supports. It calls the viewer to action by offering ways that the mental health system can be improved while acknowledging the importance of it for improving the health and wellness of individuals. Developed on a minimal budget, this film offers the viewer with a positive multi-media experience which appeals to numerous senses.”
–Bridget Murphy, Program and Policy Analyst, Reclaiming Futures
“There was a great sharing of the physical space of the room, and the personal narratives of those present, before the film was shown. This group sharing before the film set the stage for deeper awareness of the film and deeper acknowledgment of each of our paths. There is a very nice balance in the film with words on the screen, personal narrative in for form of face/voice and voice alone, and beautiful art. The pace of the film was not too fast and made time for personal reflection about the content and about my own personal experience/ narrative.”
–Mary Oschwald, Director, Regional Research Institute for Human Services
I intend to follow-up with the participants in the project with a group discussion to learn more about their reflections on how the experience of sharing their stories in this format has impacted them. From conversations after the first public screening, some members felt a little overwhelmed with disclosing their personal narratives and receiving so much feedback all at once. Others said they felt empowered and have shown enthusiastic interest in doing more film projects as soon as possible. I am also working with the director of EASA Center for Excellence to develop a workshop on public disclosure at one of the leadership council meetings because we are planning on doing more film projects.
Davis, A., & Weinshenker, D. (2012). Digital storytelling and authoring identity. Technology and identity: Research on the development and exploration of selves in a digital world, 47-64.
Gubrium, A. (2009). Digital storytelling: An emergent method for health promotion research and practice. Health Promotion Practice, 10(2), 186.-191.