By Lisa Fung
While putting the finishing touches on her book Aloha America, Adria L. Imada, a history professor at the University of California, Irvine, came across a cache of medical photographs that would lead her on a 10-year exploration of an unfamiliar, captivating and often disturbing aspect of Hawaiʻi’s past: leprosy.
“I began to notice that a lot of pictorials and annexation-era travel guides about Hawaiʻi would usually have a spread about hula and Hawaiian women, but many of these writers would also narratively discuss or sometimes even include photographs of people with Hansen’s disease,” Imada says. “It piqued my interest: What is the relationship between something that is ubiquitous like hula, that Hawaiʻi’s promotional guides wanted to highlight, and people who are fascinating but need to be hidden away?”
Hansen’s disease, more commonly known as leprosy, is an infectious, bacterial affliction that primarily affects skin, eyes, the nose and peripheral nerves. The first cases appeared in Hawaiʻi in the early nineteenth century, likely brought by laborers on arriving ships. It spread easily because of Hawaiians’ lack of exposure – and thus lack of immunity – to the disease.
Before a treatment was discovered in the 1940s and refined in the 1960s, medical officials would separate people with signs of the disease, which range from skin lesions and sores to physical deformities, from their communities and families. In 1865, a quarantine law was introduced, creating a settlement on a secluded peninsula on the island of Molokai, where leprosy patients — most of whom were Native Hawaiian or non-white immigrants — were exiled, often for the remainder of their lives. In some cases, non-leprous spouses or other family members received permission to accompany their loved one as unpaid caretakers. In the early 1900s, children who were determined to be “clean” or “non-leprous” were routinely taken from their parents and sent to live with family members outside the settlement or shuttled to institutions, even though their parents were still alive.
Imada spent hours poring over a massive archive of nearly 1,400 century-old medical photographs, which were not digitized. During her five years of return visits to the Hawaiʻi State Archives, she physically handled every one of the large photos, each pasted onto cardboard backings and in varying states of decay. Initially, she wasn’t sure she would write about the illness, instead starting from a place of uncertainty to see where it would lead her.
“I began with the question of what is the relationship between hula and leprosy – they were emerging around the same time. There is a kind of oscillation between that which is supposed to be alluring about Hawaiʻi and its people, and that which is in the shadow,” she says. “Hansen’s disease, leprosy, was the shadow in Hawaiʻi’s closet.”
Her research would take her to Kalaupapa settlement in Molokai, Hawaiʻi, the former national leprosarium in Carville, Louisiana, and the National Library of Medicine and the National Museum of Health and Medicine in Maryland. The result of her decade-long investigation is An Archive of Skin, An Archive of Kin: Disability and Life-Making During Medical Incarceration (University of California Press, 2022). It differs from other books on this dark period of Hawaiʻi’s history in part because Imada uses photographs as the source material. Her central method of telling the story is through the way people were seen, but also how they viewed themselves.
Using carefully selected and cropped photographs, Imada explores the history of how disabled Hansen’s disease patients were treated, both by the medical and public health officials and the community at large. The medical photographs of exposed bodies and skin, she writes, “provoked erotic fascination, disgust, fear, pity and empathy. They arrested the viewer far more than textual representations of leprosy: photographs horrified, shocked and stirred.”
But some of the photos show another side of life: the relationships forged by incarcerated people with each other and with their caretakers. Photographs were also used to craft a kinship with loved ones outside the community.
“One of my favorite photographs was of people who are using photographs to communicate with those whom they never will see again,” she says. “They are taking photographs while holding a photograph of someone else, so when that portrait is taken, what’s refracted is the image of the people that they cannot actually touch themselves. In sending that portrait back, it’s a method of communication.”
Those images are particularly resonant amid the Covid-19 pandemic, where people are unable to see, touch, or otherwise connect with loved ones for fear of transmitting an infectious disease. And, like the Hansen’s disease patients of Kalaupapa settlement, families today are figuring out ways to communicate, connect, and support one another despite the medical and social challenges of Covid.
“There are definitely parallels and lessons for survival and ways of nurturing each other and thinking about how to support one another through quarantine. But the Hansen’s disease patients were physically separated from their families by fences, walls, and ocean channels. It’s incredibly painful for parents who could not ever touch their children again, to have their children taken from them. I can’t imagine what that would be like,” says Imada, who with her partner has two young children.
In addition, patients in the settlement were forced to cope with a scarcity of supplies, such as food, soap and water, and insufficient medical care. Even seemingly mundane tasks that most people would take for granted, like doing the laundry, presented a challenge.
“I have a washer and dryer,” says Imada, who devotes a chapter of her book to laundry and the intimacy of care. “How did people do it without water? What did people do when there was no fresh supply of water? Can you imagine how hard it was for disabled people who actually have need of clean clothes all the time, and clean dressings for their skin?”
Today, cases of leprosy are rare in the United States but still exist in many countries. Though Hawaiʻi’s isolation law was repealed in 1969, Kalaupapa settlement on Molokai remains, with a handful of survivors who have chosen to stay there.
Imada was able to visit the settlement with Dr. Kalani Brady, Kalaupapa’s lead physician, and a group of his medical students. Employing what she calls “ethics of restraint,” the professor made a conscious decision not to pursue interviews with former patients, the youngest of whom are now in their 80s. “They were too frail; they were too tired of being subjected to social science research. Not just medical research but social scientific inquiry has been very punitive toward this group of people,” she says. “So, I opted out of talking to them directly.”
Instead, she took a more time-consuming path, tracking down a wide range of people, including relatives and people connected to the settlement who were willing to speak with her and offer insight.
“A few people wanted nothing to do with my book or me as a researcher,” she says. But those who were willing to talk shared what they knew and guided her on what was off limits. “I talked to some descendants about what they would not be comfortable with me sharing. ‘What kinds of photographs? How should I use this photograph? Should I not use it at all? Can you look at this? Tell me what you think.’ Ultimately, it’s my decision in the end because I have to take responsibility for what shows up in a book with my name on it. But I also felt much more at ease having had that conversation over a number of years with people.”
Imada grew up in Hawaiʻi, but she had only a vague knowledge of the Molokai settlement and its history before immersing herself in this project. She recalls going to the local Longs Drugs as a child and seeing people with unusual features whom today she realizes were likely settlement survivors.
“This was after 1969, after the isolation policy was rescinded officially by the Department of Health,” she recalls, “so more and more, you would see people with Hansen’s disease slowly make their way into public with varying degrees of responses.”
Imada earned her undergraduate degree in American studies from Yale University after graduating from the prestigious Punahou School in Honolulu, the private academy that counts among its alumni President Barack Obama, eBay founder Pierre Omidyar, professional golfer Michelle Wie and “Dancing with the Stars” judge Carrie Ann Inaba.
“I was the first person in my family to go away to a mainland college. No one in my family had ever gone to private school either,” she says, recalling how she ended up at Punahou on a fluke because she tagged along with a fourth-grade friend who was applying there. “Once I got in, my parents were like, now we have to figure out how to pay for this because my mother wasn’t working outside the home – she was a homemaker – and my father was working three jobs… so, I went on scholarship.”
Uncertain what direction to take after graduating from Yale, Imada returned to Hawaiʻi. She worked and began taking night school courses in the Hawaiian language, before deciding to continue to graduate school at NYU. She did a post-doc at UCLA, and took her first teaching job at University of Oregon. She was hired as a professor at UC San Diego, where she remained for eight years before joining the faculty at UCI.
“I didn’t have a real plan for how this was going to work out,” she says, laughing. “I feel really fortunate to be able to do research on something I really love and that I feel is really understudied, and teach at the same time.”
Imada wrote An Archive of Skin, An Archive of Kin with multiple audiences in mind. Historians and other academics will find the research of interest, naturally, but Imada would like her students – particularly those in medical humanities, of which UCI offers a minor and graduate emphasis – to be aware of this relatively little-known piece of history and how these patients were subordinated by medicine.
“Many of them are young people who are thinking they are going to become doctors, but they have no sense of this wider world. These are the kids who need to know the perspectives of people who were really treated horribly by circumstance – by having been caught in an epidemic – but also were very purposefully suppressed by medical authorities, public health officials in the United States and in their territories,” she says. “Yet they also emerged as survivors.”
Perhaps most importantly, Imada hopes to reach the descendants of Hansen’s disease patients, some of whom may not even realize their connection to the Kalaupapa settlement. It was important to Imada that every photograph in the book told the story of the person depicted, which meant painstakingly researching biographical material that could assist people seeking to fill in gaps in their family histories.
“Each person who is represented in a photograph is not just mentioned gratuitously in the book. There’s pretty dense biographical material that people can follow,” says Imada, whose book includes nearly 60 pages of meticulously detailed footnotes. “If they are a relation who is looking to find out where their ancestor was, whom they were married to, where they were at in different points, this offers some records to trace them.”
For now, Imada is taking a break from teaching while on leave after being named a 2021 Andrew Carnegie Fellow. The two-year fellowship will allow her to work on a project about surviving epidemics in the 20th century and how diverse communities of ordinary people were able to navigate treacherous public health and social and political crises of that time.
The challenge during the pandemic has been accessing archives and materials for her fellowship project, with travel limited and many research libraries closed. The release of her new book, whose publication was delayed due to supply-chain issues tied to Covid, will be a nice distraction.
In her work as an author, researcher and documentary filmmaker, Imada has woven in the hidden personal narratives of everyday individuals to help illustrate and humanize complex research topics. Her new project will likely follow that trajectory.
“When we think about the rise and falls of epidemics, like 1918 influenza or HIV/AIDS, for instance, we often forget about previous pandemics, the people who are left in their wake, and what they did,” she says. “I’m interested in the kind of everyday micro-practices of people, what they did in order to survive, and what they remembered and took with them to the next crises.”
An Archive of Skin, An Archive of Kin: Disability and Life-Making During Medical Incarceration (University of California Press, 2022) is out now.
Photo credit: Steve Zylius/UCI