Liz Hibbard reflects on Tei Okamoto's workshop, which discussed two projects that explore the intersection of oral history and public health.  This talk took place on Thursday, October 2, 2014.

On Thursday October 2nd, 2014, I saw Tei Okamoto present his oral history work at the Columbia Oral History Workshop series. His current projects include The Love and Affection Project, gathering the stories of those who were orphaned by the AIDS epidemic, and The AIDS Epidemic and House Music: Twenty Years of Children of Color at Church.

In his conversation with Oral History MA students, prior to the public presentation, he was asked by one student about other people or existing projects that have inspired his work. Tei began his answer by citing None on Record, founded by Selly Thiam, an oral history archive of Africans who identify as QLGBT. He told us that he found the portraits of the narrators especially powerful.

Stories of race and sexuality are embodied. The images of narrators, joined with their words and their voice, bring those stories to life and show what is often hidden from the public eye as well as silenced. He went on to explain his personal need for more stories and images like the ones amplified through None on Record. As a young person the stories he heard about AIDS and activism were centered around white gay men.

That's the representation Tei experienced, but the facts are strikingly different. The Center of Disease Control published these statistics about HIV from a 2011 study:

  • More than 1.1 million people in the United States are living with HIV infection, and almost 1 in 6 (15.8%) are unaware of their infection.
  • Gay, bisexual, and other men who have sex with men (MSM), particularly young black/African American MSM, are most seriously affected by HIV.
  • By race, blacks/African Americans face the most severe burden of HIV.

Why then, Tei asks, have people of color been left out of the dominant narrative on HIV/AIDS? Knowing how public perceptions correlate to advocacy, public health decisions, and access to care, the narrative needed to change. Tei's work in oral history archives the stories of survivors, dancers, lovers, and artists who can paint a clearer portrait of history by lending their voice.

Tei shared other inspirations with us, including a portrait series called The Real Faces of HIV/AIDS: In honor of National Black HIV/AIDS Awareness Day, advocacy journalist Kellee Terrell talked to survivors about what HIV/AIDS has taught them (2/7/2014, Ebony Magazine). Each portrait displayed also included words from the person photographed about their experience.

I could be silent, but what good would that do? I hope that my transparency allows for others to see someone who has experienced the same shame, hurt and pain that comes along with having this disease, so they know that they are not alone. - Guy Anthony; Diagnosed 2007

 

These images, coupled with narratives distilled in a few words, grapple with the silence and invisibility of life with a stigmatizing illness.

Tei's observations about these projects motivated me to go deeper and seek out other works that address stereotype, stigma, and underrepresentation through portraiture and personal testimony.

 

Stand Up Get Snapped: 30 HIV+ people, by Ed Zollo in the UK, set out to show that the story of life with HIV is more complicated than just one race, one gender, and one type of sexual preference which dominates the statistics.

As Tei illustrated in describing his experience of None On Record, seeing a person's face while you hear their words can be an emotional experience. While some of the stories heard in Stand Up Get Snapped were difficult, many spoke positively about life and accomplishments. These narratives served to undercut the perception that a diagnosis of HIV can define the course of a person's life, or necessarily lead to their death. The artists chose to display hope and diversity of experience.

Such choices, made by the artist or story gatherer, were very apparent as I compared the following two photo series on people with breast cancer.

The first is The Open Road, by Joli Livaudais Grisham in Louisiana, US.

 
Strength is never losing the will to do what is right; it is carrying others through troubled times through your own challenges; it is having faith in optimism. - Barbara Grandon; Diagnosed 2007

 

 

 

 
 
 
 
 
I didn't have to take any chemotherapy or radiation but she had to take both. She lost all her hair and she made me very proud of her when she shaved what was left of her hair off and went bald all the way. Sometimes she wore scarfs and wigs, but mostly bald. She looked cute with her bald head and cute big earrings. - Barbara & LaWanda Johnson; Diagnosed 2007

 

 

 

 

 

 

 

 

The second is The SCAR Project: Breast Cancer Is Not A Pink Ribbon, by David Jay in New York, US.

These two projects are extremely different while still portraying honest experiences of people with the same illness. The seed of this difference lies in the stated mission of each project. One served to remove fear and alienation by portraying "life affirming role models." The other strove to depict a "raw" portrait of courage.

These portraits are not merely displayed, they are gathered with intention to achieve certain goals and frame the narrative in very specific ways. Stories can be told to silence or to amplify experience, to deconstruct or to further an agenda. The hand of the artists, and the hand of the oral historians, are significant in creating meaning out of experience and memory.

For Tei, the narrative of AIDS when told through the perspective of white men is a half story. In his presentation that evening he made the case that seeking out, and choosing to frame a different narrative is in itself a radical act. There is potential for positive change through such work, but also a responsibility for self-awareness and transparency.

 

Columbia University’s Oral History Master of Arts Program and the Program in Narrative Medicine have partnered this year to present a workshop series open to the public on the intersections of oral history, health, and medicine. Join us next time.

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Leyla Vural reflects on Sayantani DasGupta's workshop on narrative humility and medical listening in oral history.  This talk took place on Thursday, October 16, 2014.

Sayantani DasGupta is a medical doctor, professor of narrative medicine and health advocacy, and writer who says of herself that her “interests, teaching, and scholarly work are at the intersection of social justice, stories, and embodiment, or health more broadly.” DasGupta puts her digital pen to activist use. She writes – a lot. When she thinks something is wrong, she calls it out. She’s smart and funny, biting and direct, open-hearted and warm; my idea of a badass. Not your typical tag for a medical doctor or academic, but DasGupta is not typical. If she reads this, I think she’ll recognize the compliment, and be pleased.

In addition to her work on narrative medicine, outsourcing surrogacy, and women’s stories of illness and healing, DasGupta is an outspoken social critic. She writes frequently for Adios Barbie (“the body image site for every body”), Racialicious (“the intersection of race and pop culture), The Feminist Wire, and elsewhere. She doesn’t shy away from tough issues. Whether it’s the Global North trying to “save” the Global South, racist and sexist Halloween costumes, fat shaming, or what women should wear to work, DasGupta has something to say when humanity and equality are at stake. She’s a feminist who brings her daughter into her work, just as her mother brought her. 

DasGupta’s work, while rich and varied, is in an important sense all of a piece: It’s about seeing – and listening to – other people in the fullness of their being – body and soul – and granting them the fundamental respect that each of us wants and deserves as a matter of right. She’s interested in the ways “race, gender, class, labor politics, all of these things, impact the stories we tell, and the stories we’re able to listen to, the stories we make space for in health care.”

In her teaching and writing about narrative medicine, this means teaching doctors and other health professionals to listen. To DasGupta, the act of listening can in itself be an act of social justice. In her October 16 talk on “Narrative Humility: Medical Listening and Oral History”, she discussed the ways she teaches medical listening through oral history. Listening, she says, is a “call to a relationship.” But since relationships always involve power, we can’t understand the stories people tell without understanding power and politics. DasGupta draws on oral historian Alessandro Portelli’s idea that an interview is “an experiment in equality” to bring a social justice orientation to storytelling and listening.

The kind of listening that matters to DasGupta has her interested in moving away from a health care model that’s largely limited to the relationship between patient and doctor. “Always starting with the doctor-patient relationship is problematic,” she says. “Maybe that re-inscribes certain medical powers.” DasGupta envisions a broader, more inclusive citizenship model of health care that challenges the standard power dynamics in the system today. “Health advocacy is really exciting because it totally disrupts that dyadic space,” she says. “I’m really interested in communities of listeners. What does it mean to collectively listen? Dialogic witnessing would be a really interesting avenue of exploration at the interstices of oral history and narrative medicine.” Under a citizenship model, health care providers would examine their own frame of listening. Medicalization and power would themselves be subject to questioning and reflection, and people would have the freedom and space to define for themselves whether or not they are ill. The deaf, DasGupta points out, consider themselves a linguistic community; disability is a frame others impose on them.

For DasGupta, stories require context. “Simply reading any story with a medical student or engaging them in a narrative writing prompt,” she writes in a piece on toxic body culture and fat shaming, “is not the same as actually educating them in structural issues of oppression and inequity.” Her conclusion: “Medical narratives are powerful. Let us use them not to ridicule, alienate, or demonize our fellow human beings, but rather, [to] create a much-needed change to a more socially just health care.”

DasGupta isn’t waiting for a better day; she’s working for it. Paraphrasing comedian Margaret Cho, DasGupta ended a talk in June 2013 with a call to action: “For us to have self-esteem is truly a revolution, and our revolution is long, long overdue.”

But if DasGupta is a revolutionary, she’s one with a poetic heart. She opened her October 16 talk on “Narrative Humility” with Rumi’s Story Water and ended it with his Listening. Stories may be about power, but they’re also about change, and the possibility of justice.

 

Columbia University’s Oral History Master of Arts Program and the Program in Narrative Medicine have partnered this year to present a workshop series open to the public on the intersections of oral history, health, and medicine. Join us next time.

Photo by Sergey Zolkin, upsplash.com (Free, do whatever you want, high-resolution stock photos)

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Erica Wrightson reflects on Sayantani DasGupta's workshop on narrative humility and medical listening in oral history.  This talk took place on Thursday, October 16, 2014.

“When was the last time you felt truly listened to? Not just heard, while somebody was texting, but deeply attended to….That sort of relational moment—that sort of being seen and being heard and being made to understand that we matter in this world—that is one of our fundamental human needs.”[1]

Medical humanities educator and writer Sayantani DasGupta has thought a lot about paying attention. When DasGupta was in medical school she was taught bedside manner in a class without an instructor. Instead, students watched a prerecorded video in which a white-coated physician seated at the end of a long table explained how to listen. As technology has improved and increased in clinical settings, the nature of communication between doctor and patient has changed. Back in the day, a doctor would set out with his black bag in hand to visit a patient in their own home, but these days there is so much technology between doctors and their patients that sometimes a doctor will not have physical contact with his patient in the course of an appointment, but instead make his diagnosis from behind a screen.

Speaking to a packed room for the 2014-2015 Oral History, Medicine, and Health Workshop series at Columbia on October 16, 2014, DasGupta discussed the role of oral history in narrative medicine, a medical approach and master’s program at Columbia that aims to change the way care is given and received by valuing the stories and experiences of patients and caregivers. If you want her short answer to what it means to be a narrative medicine instructor, Sayantani will say, “I teach people how to listen.”

DasGupta’s mantra is “stories matter,” and this, she explained, has to do with the fact that “stories are also about power” and they demand that we ask questions regarding stories, such as “Whose story counts? Who owns the story? What voices or stories go unheard? Who gets to speak and who is perpetually spoken for?” But while stories should be valued, DasGupta emphasized the importance of not getting too precious about storytelling. “Stories aren’t inherently magical or healing or just,” she said. Quoting writer Chimamanda Adichie, DasGupta reminded us that stories can dispossess and malign as much as they can be used to empower and humanize and that “people should be able to define and not define their bodies as they will.”

DasGupta believes that we need spaces for intersection of storytelling and medicine and that all clinical trainees should be trained in oral history. To teach medical listening through oral history, which she describes as a form of qualitative research, she encourages her students to interview someone with an embodied condition that they’re willing to talk about and to focus on life history, not clinical history. The oral history approach is effective, said DasGupta, because it doesn’t ask people to talk about their illness; patients are encouraged to speak about themselves and their lives as they wish.

It’s not only important to learn to listen to others, but to listen well. Oral history methodology is useful to medical professionals because it teaches humility, sensitivity, and attention to nuance. “Listening is not a one-size-fits-all activity,” she said, and being sensitive, adaptable, and responsive is crucial. She arrived at her concept of narrative humility through oral history, which teaches us that stories are “relational events, with real live people on both ends of them!”

“We have a perspective of stories as fixed objects that don’t change in time,” she said. “We think of stories as immutable, non relational facts to fixed repositories of truth, like statures we carry around.” According to DasGupta, “bad historian” is actually a term doctors use for patients they don’t want to talk to, people they’d rather analyze through numbers and medical records instead of firsthand accounts of self. It’s important for people to feel that they can be trusted to tell their own stories, that they are reliable narrators, and that they will be believed. Oral historians privilege memory and experience over fact, valuing even the narratives of “bad historians.” As the great oral historian Alessandro Portelli has said, oral history allows us to see "through and beyond facts to their meanings.”[2] A former student of OHMA professor Mary Marshall Clark, DasGupta claims “oral history has taught me so much about this demand for narrative truth.”  “Instead of teaching people how to look like they’re listening, let’s teach them to listen.”

 

To find out more about doctor, writer, and educator Sayantani DasGupta, see her website.

For information about our upcoming discussions, see the 2014-2015 schedule here.

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[1] See DasGupta’s TEDxSLC talk "Narrative Humility: Listening as Social Justice."

[2] Alessandro Portelli, “The Death of Luigi Trastulli: Memory and the Event,” in The Death of Luigi Trastulli, pp. 1-26; quote from p. 2.

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Check out Leonard Cox's reflection on Luke Gerwe's presentation about Voice of Witness and cultivating oral history networks.

During a recent forum co-sponsored by the Oral History Master of Arts (OHMA) program at Columbia University, Luke Gerwe (Gur-we), Managing Editor, Voice of Witness, said, “Fiction writers make great editors of oral histories because they know exactly what details to include. They seem to select the best imagery that really gives the reader a portrait of how the narrator experiences life.”

Gerwe went on to share that skillful editing can yield a text that is more closely aligned to a narrator’s lived experience than can be accomplished solely with an unedited transcript.  His reasoning seemed inviting, if not poetic, as he described the artistry of editing as a mechanism to make a person’s story more accessible to a diverse group of readers.   

It’s clear the oral histories published by Voice of Witness are accessible, beautifully written, highly compelling and certainly full of heart-wrenching imagery—“it was like my skin had been rubbed away,” is just one example. It’s also clear that the editing process required to produce a quality story can be daunting.

When I consider the countless number of hours that must go into the content and structure of a story I get a bit overwhelmed. Having just finished my first three transcripts as a student of oral history, I’m wondering about the next several steps that I will need to add to my path of learning.  Hopefully, well-chosen steps will lead me to a point of refinement where I can make the best editing choices that will, in turn, lead to the most effective stories.  

At this stage, I’m kind of partial to the “ums,” the coughs, the sounds and quivers of choked-back tears, the gulps, the silences, the words that don’t make sense, the words that are specific to the narrator, and the malapropisms that I always find entertaining.  As I read more oral histories, I’m learning that my partialities might need to go. As I read more oral histories, I’m learning more about the essential elements that help give a narrator’s story life on the page. I’m learning more about the power of editing.

Allow me to share the story about my first time out as an editor of an oral history. I spent years recording the lived experiences of my maternal grandmother.  Her words were not captured on one of today’s sophisticated digital recording devices, but instead were painstakingly recorded in the handmade journals that I used to glue together from pieces of tossed paper that I would gather from the trash basket near her typewriter.  On the occasions that I would flip through the collection of her tales, I would relish each and every word.  Her thoughts seemed luscious, sage, and full of histories that were linked to other histories.  To me, her words told the perfect story.

For an undergraduate paper about Indiana history, I decided to resurface the journals and share some of my grandmother’s stories.  I remember poring over each and every word to find the right combinations that would best describe the story of a woman who grew up on an orchard in southern, Indiana.  I had limited space. I was faced with choices.  I remember, however, being totally engaged in the process of selecting just the right story.

Was it the story about how she could peel an apple in one continuous slice? Was it the story about her initiative to organize a group of women from surrounding farms to make quilts for those in need?  Or, was it the story about how I loved to touch her rough hands and ask her to tell me about each and every crack in her skin? Admittedly, I didn’t have the skill, precision or experience of Gerwe’s editors but I remember the process taking a considerable amount of time.  I remember deleting words and moving phrases around to create an image of my grandmother that would resonate with the reader.  Although I knew the audience was limited, I wanted my history class to know the woman whom I so admired. It was a painstaking process.

Gerwe described the painstaking process of editing transcripts.  “We [Voice of Witness] probably have around two hundred thousand words for an average project.  Maybe fifteen thousand words make into a final draft,” said Gerwe.  “After editing, we aim for narratives to be in the six-thousand- to seven-thousand-word range.”

Here he further describes some of the challenges of the editing process and the rigor that was applied to the Voice of Witness book, Invisible Hands – Voices From the Global Economy.

Ultimately, when called upon to edit a transcript, I plan to follow Gerwe’s lead and engage in the rigorous undertaking needed to create a voice for a person’s lived experience. I pledge to select each story with thought, compassion, a nod to imagery, and with a commitment to collaboration. I pledge to be very careful about the red ink I use. I pledge to find the right words.  

This workshop took place on Thursday, September 18, 2014 as part of the 2014-2015 Oral History workshop series.  Join us for the next one! 

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Helen Gibb, a current OHMA student, reflects on Luke Gerwe's presentation about Voice of Witness and maintaining oral history networks. Follow the links in the post for audio clips.

As an adolescent my literary diet consisted of, amongst other things, a shelf or two of autobiographies by Holocaust survivors. Some were recommended by a favourite History teacher and others simply stumbled upon in my local bookshop. Without exception they were filled with stories of loss, survival, fear, hate and the strength of the human spirit. Enthralled and disgusted, they took me far from my comfortable world in a rural part of Wales.

It is only years later that I have come to understand these narratives as part of a much wider context: a post-World War Two era of the individual, personal storytelling and a culture of witnessing unimaginable horrors through the words of those who experienced them. And Holocaust testimony was really just the beginning. Recent decades have seen a boom in the use of narrative to speak out against a multitude of human rights issues from homophobia to genocide, creating a dense web of stories which have only proliferated in this era of socially connected media. Reaching out to a global audience has become a model for healing on both an individual and cultural level.

However, this gathering of personal narratives is not always a positive undertaking. When Voice of Witness’ Managing Editor, Luke Gerwe, spoke at a recent gathering hosted by Columbia’s Center for Oral History Research he raised the problem of exploitation of narrators in vulnerable situations.

Even narrative does not escape commodification. Those books that I read as a teenager were the result of decisions based on what the ‘audience’ wanted as well as what was acceptable to speak of at the time. For human rights advocates this can mean taking stories from ‘victims’ and ‘survivors’ in order to appeal to readerships and supporters, framing their stories in a way that is digestible to listeners outside the crises.

A non-profit organisation, Voice of Witness is aimed at ‘fostering a more nuanced, empathy-based understanding of contemporary human rights crises’. The stories they publish in their book series are an attempt to challenge the problematic assumption that individuals are simply stand-ins for an idea or an issue. The organisation’s work demonstrates they are both embedded within, and able to challenge, the culture of narrative within the human rights field. Working as they do from the USA and publishing for a predominantly Western readership, their context is rooted within the historiography of narrative, witnessing and this culture of commodification.

Yet their books reveal the humanity that can so often be lost with similar kinds of testimony by connecting readers on an individual level to the entire life story of another human being. This method is positively influenced by an oral history approach and provides the potential for recognition between reader and narrator that goes beyond the moment of crisis, allowing for a more active, sustained and engaged audience.

Their publications also directly inform the human rights sector, the narratives working as an educational tool for staff at different organizations, helping them to understand their clients’ experiences better.

Taking an approach like that of journalists and oral historians, Voice of Witness does not pay its narrators for their story. The hope is that this way the stories are as close to the ‘truth’ as possible and that together they find other ways for narrators to benefit from the telling, for example through advocacy work or playing a part in shaping policy at all levels. And of course, despite the potential for exploitation, there remains the drive from potential narrators themselves to speak out against the issues they face.

Voice of Witness presents a model for commitment to narrative in a way that works to prevent further power imbalances. As oral historians entering the activist and humanitarian spheres, we likewise hope to do justice both to those we work with, as well as our audience and find ways to both operate within, as well as subvert, the context of these global forces.

This workshop took place on Thursday, September 18, 2014 as part of the 2014-2015 Oral History workshop series.  Join us for the next one!

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 I like visiting museums.  No matter where I have lived, I have always made it a point to visit them.  Having a great love of Native American history, when I moved to New York City to attend Columbia University, the first museum I visited was the Museum of the American Indian.  This museum is located in a very large building in southern Manhattan that features revolving exhibits throughout the year.  What I noticed, upon my visit, was the lack of oral history in the telling of the Native American experience. 

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Oral history is evolving and continues to be a platform to study and propose change and activism. What we’ve come to understand as oral history has been turned upside down.

Catherine Charlebois, Curator with the Centre D’histoire De Montreal, adds another sentence to the developing definition of oral history.

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As an oral historian, I am committed to using my work to engage communities in the present. In keeping with this commitment, I would probably steer clear of institutions with names like “Brooklyn Historical Society.”  However, the name Brooklyn Historical Society (BHS) belies the innovation and deep level of community engagement that this institution and its projects embody.

Once upon a time, oral histories were recorded solely by researchers who tucked them away neatly into archives deemed for academic research; many were never heard from again. However, with the variety of technology available today, many former methods have been called into question so that valuable records may be fully utilized by historians as well as non-historians.

My curriculum vitae has become as significant to my success as the actual 
professional and academic experiences that fill the two page long document. Many 
of these experiences I cherished; however, there were quite a few that I simply 
endured. Right after college I agreed to be a researcher for a start-up company that 
never quite started and never actually paid me for the days I spent in the office 
alone while my boss made up and broke up with her boyfriend.

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This summer Nicki Pombier Berger [OHMA 2013] launched an innovative oral history project in partnership with Toward Independent Living and Learning, Inc (TILL), a Massachusetts-based agency serving individuals with intellectual and developmental disabilities and their families.

 

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After reading from Abbie Reese’s book Dedicated to God, I was struck with some vague notion that being an oral historian is not all that different from being a nun. It seems absurd. What insights can a life devoted to God shine on the practice of oral history? Well, I noticed some patterns, mainly revolving around this word: sacrifice. I read about the sacrifices the nuns are required to make, including vows of poverty, chastity, obedience and enclosure. A nun makes her vows, including removing herself from the world, in order to pray for humankind, or to put it simply, to help people reach heaven.

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Perhaps, dear reader, you are a prospective OHMA student, researching the field or oral history, considering that next great leap of faith called graduate school.  Or perhaps you have taken that leap, you are an OHMA student, buried in reading, writing, and research with only a vague sense that one day you will be dumped out onto the cold, hard streets of New York with nothing but a shake of the hand and a stroll across the stage. 

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