Interview with Billy Howard
In this interview, Howard describes his experience creating Portrait of Spirit: One Story at a Time, and reflects on the aspects of society that continue to present obstacles for people living with disabilities. He also weighs in on how he hopes Portrait of Spirit continues to serve as a resource for those in the rehabilitation community.
What was it like for you to create and be involved in this project?
Although I had been around people with disabilities since college, the experience of finding, meeting, listening to, and documenting the lives of the 25 people in this project inspired me, with their indominable spirit; shocked me, with the extraordinary efforts they were required to make in some cases just to get through their day in a world set up with obstacles the rest of us cannot fathom; angered me, with the loopholes that allow companies to discriminate against those with different abilities; and filled me with hope, through the stories of grace and pure will these individuals shared with us.
Did this project touch on any personal experiences for you?
This project was deeply personal to me. I attended St. Andrews College (now University) in North Carolina, which was one of, if not the first, barrier-free campus in the country, allowing people with physical disabilities to attend college with full access to classes and social activities. As a result, the campus was diverse not only along racial, ethnic, and religious factors, but also diverse in physical abilities. What I discovered at a time when I was coming of age, was that we all had different abilities and disabilities. I left St. Andrews with friends that informed my life as an adult.
What most surprised you about the experience?
Every documentary project is filled with the same surprise, and it is the thing that continues to motivate me to continue through a project’s obstacles and setbacks. That is the wonder and joy in having people share their most personal stories and reveal to us their challenges, pains, loves, and fears. Surprise may not be the right word in this case; it is more like awe.
Describe how you and Maggie worked together and influence each other.
I think what Maggie [Holtzberg] and I share in our work is an innate curiosity about humanity and a desire to discover and learn from people who have different experiences than us. Maggie shares that with others through her exceptional skills as an interviewer. When I was with her on interviews, I would sometimes leave forgetting that she had interviewed the subject; it had been more like witnessing an intimate conversation between very close friends. The revelations came from a trust she was able to build in a short amount of time. Some people were speaking of things that were deeply painful to them; Maggie gave them the confidence that their words would be honored and respected. I have tried to work the same way with the people who I photographed, making us a natural fit. I tried to take portraits that would honor the spirit of life they were revealing to us.
You have created many other projects that dive into this exploration of the human experience. How did this deep and genuine desire to know “the other” develop?
My alma mater, St. Andrews, was an introduction to people who I would have thought were very different from me and the beginning of a life-long discovery process that revealed the beauty in how we can learn, connect, and grow best by being around people that can bring us different perspectives. I have always sought out people, especially in my work, that bring me a broader understanding of the world through their different experiences.
What artist has most influenced your own work?
When I was in high school, I discovered the photography of Dennis Darling and saw how he used the camera as a ticket to explore the lives of people he never would have had access to without photography. Some of these were people with moral flaws, some were people in exotic locales, and some were heroes. The common denominators were a camera and curiosity. In a great act of serendipity, I was able to meet him and we became lifelong friends. He is still a mentor to me and my work.
How did this project impact how you view your own life?
It makes me profoundly thankful. I have had my own struggles with pain and illness (haven’t we all) including a form of arthritis that at times challenges the work I do. I have, quite literally, called on the strength of the people I met through this work, humbling myself with my own minor issues, and, as the Brits would say, carrying on.
In the 24 years since the birth of this project, how do you feel society has evolved (or not), and what needs to change?
While there have been many technological changes that have allowed people—through the use of computers and enhanced prosthetics, among others—to live life without as many obstacles, the loopholes within the Americans with Disabilities Act have also kept society from moving as fast as it should in breaking down the physical barriers to access for people with disabilities. We learned that firsthand recently as we went to a restaurant to celebrate the revival of our exhibit only to find multiple obstacles to those among us in wheelchairs that blocked access to the building.
How did you navigate that fine line between celebrating the “human spirit” and falling into the “super-crips” trap?
Our subjects made it very clear to us from the beginning that they didn’t see themselves as heroes, but merely people who lived life like the rest of us, but with more visually apparent hurdles. One of the people we included was former U.S. Senator Max Cleland, who lost one arm and both legs in a grenade mishap in Vietnam. He wrote a book, Strong at the Broken Places, which said that we all have injuries we need to heal, it’s just that with him and others with disabilities, those injuries are more visible. That philosophy is so powerful to me, basically saying we are all in this together, we must all have empathy with each other.
How do you think this exhibit impacts clinical care and rehabilitation science education?
I cannot imagine wanting a career in healthcare in any field without first having a deep sense of empathy for people, and particularly people whose lives can be improved through understanding, science, and medicine. My hope is to, through the interactions this project allows between the viewer and the people we photographed, create an enhanced understanding of how people in the medical/rehab fields process what they have learned and how they use their skills. Through Maggie’s interviews I hope it opens them to new ways to connect to their patients, and, hopefully, through my photography, they can look into the eyes of those they serve with a deeper desire to understand who they are as people. My desire would be for them to see the person first, not the disability. That makes all the difference.
How do you envision this book and exhibit moving forward through the rehabilitation community?
My deepest hope is that those on the service side are inspired by the voices of those in this work and gain a more profound sense of the beauty and nobility in the work they do and that those who are dealing with their own physical disabilities, especially those who are entering into this world for the first time, can see that they can live a full and wonderous life and that their disability will always be a lens through which they see it, but not the only one. They should never feel reduced by their disability, but lifted by their own humanity.
About the Authors of Portrait of Spirit: One Story at a Time
Billy Howard is a 2011-2012 Rosalynn Carter Fellow in Mental Health Journalism. He is the author of Epitaphs for the Living: Words and Images in the Time of AIDS; Portrait of Spirit: One Story at a Time, images and interviews of people with disabilities with an introduction by Christopher Reeve; and Angels and Monsters: A Child’s Eye View of Cancer with an introduction by Jeff Foxworthy. His photographs are in the permanent collections of The Library of Congress, the High Museum of Art, The Carter Presidential Center, and The Centers for Disease Control and Prevention. In a tribute to Dr. Martin Luther King, Jr., Howard’s photographs were projected on the stadium screen during the opening ceremonies of the 1996 Olympic Games in Atlanta, GA. His photographs are featured in the book Pandemic: Facing AIDS with an introduction by Kofi Anan, edited by Rory Kennedy. He received an Honorary Doctor of Literature Degree from St. Andrews University in North Carolina in 1996. Readers can learn more about Howard’s distinguished career here.
Maggie Holtzberg was the 2018 recipient of the American Folklore Society’s Benjamin A. Botkin Prize, recognizing her lifetime achievement in public folklore. She is currently the Manager of the Folk Arts & Heritage Program at the Massachusetts Cultural Council. As a folklorist, she works closely with traditional artists and communities through documentary fieldwork, grant programs and technical assistance. She has conducted field research throughout the state of Massachusetts documenting traditional arts, and established a traditional arts archive. She is the author of The Lost World of the Craft Printer (1992); Portrait of Spirit: One Story at a Time (1996); producer of the sound recording Georgia Folk: A Sampler of Traditional Sound (1990); and co-director/producer of the documentary film Gandy Dancers (1994). Holtzberg holds a PhD in Folklore and Folklife from the University of Pennsylvania and served as Folklife Program Director of the Georgia Council for the Arts prior to moving to Massachusetts.