5 Questions About: The Schizophrenia Oral History Project (TSOHP)

We’ve asked creators of non-print and media projects reviewed in the pages of Oral History Review to answer 5 questions about why we should explore them. In our latest installment of this series, project founders Lynda Crane and Tracy McDonough discuss The Schizophrenia Oral History Project (TSOHP)  Read more about it in their 2014 OHR article, “Living with Schizophrenia: Coping, Resilience, and Purpose.”

Read Robin Weinberg’s review of The Schizophrenia Oral History Project in issue 46.2.

What’s it about and why does it matter?

Started in 2011, The Schizophrenia Oral History Project (TSOHP) is an ongoing project collecting and archiving life history narratives (not illness narratives) of persons living with schizophrenia or schizoaffective disorder. With very few exceptions, the literature on schizophrenia focuses almost exclusively on deficits related to the condition, and the public view of those with schizophrenia is of people who are violently dangerous, incoherent, and incapable of insight. TSOHP provides a platform for such persons to speak directly to mental health professionals and the public, in order to counter existing prejudices.

How does oral history contribute to your project?

In addition to recording these life history narratives, we also provide public talks about the project to various audiences (community groups, law enforcement, clinicians, oral historians, undergraduate and graduate students, etc.) that include audio excerpts from our narrators’ stories. In addition to being oral historians, we are psychologists, and we have learned from the field of social psychology that the most effective way to reduce stigma is to humanize the target of the stigma. Listening to audio excerpts is an essential element of the talks and serves to humanize persons with schizophrenia. When we see the photograph of Shirley with her dog Fluffy, and hear the emotion in her voice as she discusses anxiety and fear of interacting with people in society, we no longer see her as an “other.” She is now a human being who, like us, experiences challenges, hopes, accomplishments, and love. She is now a person because we connect with her. And because we connect with her, it makes it very difficult for us to stigmatize her. Audience members have confirmed this, identifying the impact that they believe came exclusively from the use of oral history as the method to deliver the message (“I feel this is a very powerful way to hear the message. It is one thing to read about schizophrenia in a textbook, but it’s another to hear it from someone who has schizophrenia.” “Hearing the narrators’ stories straight from the source was very, very powerful. It has a greater impact than statistics, reports, secondary reporting.”).

What do you like about using oral history as a methodology?

We enjoy oral history because it allows people to represent themselves the way they want to be represented; they are not limited by the questions asked of them. Furthermore, it is only through oral history that listeners can truly experience what it is like to see through the eyes of another.  As clinical psychologists, we see the value in people understanding signs and symptoms related to mental illness. But as oral historians, we believe in the power of oral history to allow them to see the person behind the diagnosis. That is where true learning occurs, because that is where empathy is born.

Why will fellow oral historians be interested in the project?

There are two aspects of the project that we believe fellow historians would find particularly interesting: 1) our methodology of creating “dialogue” between narrators and audiences and 2) the ongoing and frequent nature of providing public talks about the project for education and advocacy. The “dialogue” is created by a circular feedback loop that begins with the narrator’s story. Then, during our public talks about the project, we gather audience feedback, including messages for our narrators—hundreds so far. Following this, we re-contact our narrators and share with them a multi-page collection of these messages, while recording their reactions.  Many of these reactions, we then share with subsequent audiences. Thus, a kind of dialogue between narrators and audience members is formed, providing narrators with a real sense of how their words impact others. After reading some of the overwhelmingly positive reactions others have had to her story, Shirley stated, “I feel like I matter for the first time.”

In addition to creating this “dialogue” between narrators and audience members, another unique aspect of our work is the extent of public talks we provide—most without honoraria. Many oral history projects culminate in some form of publication and/or a public presentation of what was learned. To date, we have provided over 50 presentations to various audiences as well as measured impact of the talks. In doing so, we identified educational, emotional and motivational responses and found that over two-thirds of the audience members learned something new, one-half experienced an emotional reaction, and one-fifth indicated motivation to modify their behavior, showing that listeners report measurable change on several levels after hearing TSOHP narrators’ stories.

What is the one thing that you most want the audience to remember about the project?

This is an interesting question for us because at the end of all of our interviews, we ask our narrators, What do you most want people to know about you and your life? Their answers are then highlighted on the individual webpages as “His/her message,” Their messages (“I’m not dangerous. I’m just a human being, with a problem.” “How would you cope if you were in the same situation?” or “No matter what I go through in my life that I’m the same, nice, loving, caring [person], and I won’t change that for anything in this world.”) are simple, elegant, powerful, and get at core issues of what it is to be a human being. Their messages are what we want others to remember most.