Representation Matters

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.