Books In Conversation
KIMBERLY J. SOENEN with Kathleen Rooney
ChicagoBridgeport Art Center
“SOME PEOPLE” (Every)Body
Are we healthy? Writer, educator, and curator Kimberly J. Soenen wants to hear your answers, and to get you to listen to the answers of other people. To facilitate this exchange and to humanize the healthcare debate, she has organized the ambitious and interdisciplinary group show “SOME PEOPLE” (Every)body, which will open at the Bridgeport Art Center in Chicago on October 18, 2019. Because “some people” is a term used to create distance from “others,” this large-scale exhibition will celebrate the strength and beauty of the human body, as well as the power of compassion, empathy, athleticism, and human connectivity. With an inclusive array of written and visual work by dozens of contributors, the show raises opportunities to discuss the business practices of the United States health insurance and pharmaceutical industries, as well as how chance, circumstance, and luck impact the attainability of health, however we define it. With a refreshing yet unsentimental focus on the universal embodied experiences—birth, marriage, family, intimacy, death and love—that unite us as humans, Soenen hopes to bridge the Us versus Them chasms that divide us in the healthcare debate, inviting us to consider whether health is merely the state of being free from illness or injury, or something more encompassing. As she was preparing for the show in Spring of 2019, we corresponded over email about how healthcare policy is consistently addressed in a combative manner, where change can come from, and the common good, as well as why it’s important to realize that, “Like the physical body, society and the body politic are interconnected.”
Kathleen Rooney (Rail): Of what does a typical day in the life of Kimberly J. Soenen consist? As in when you’re not busy putting together a complexly curated and socially conscious show, how do you spend your time?
Soenen: I start my day with an unplugged morning hike, usually along Lake Michigan. I especially like it in the winter. I need open skies, water, and trees daily. I read the news over two very slow cups of coffee before I power up. My early mornings are spent surfing investigative reporting: Marisa Kwiatkowski, David Jackson, Gary Marx, Jane Mayer, Marshall Allen, Gretchen Morgenson, Eric Lipton, Jodi Kantor, David Fahrenthold, Monica Eng, Mark Mazzetti, David Barstow, and a few others. I do a deep dive into local and national healthcare policy, then on to NPR and client work.
I am a strategic and visual communications consultant specializing in film, media arts and reportage. I also advise boards who are engaged in the editorial and advocacy healthcare policy space. I often serve commercial clients outside of that realm but my core practice is strategic and visual communication. My days are spent editing treatments and scripts, steering documentary and commercial projects from financing to fruition, and directing communications and visual strategy. Clients regularly consult me for organizational management and operations improvement, too. For the last two years I’ve been working on Just Play Global, a series about the empowerment of women musicians globally. I’ll soon be producing a six-part series related to reducing cyclical trauma in Chicago. I’m known for keeping the trains running on time but also recognize the creative process demands elasticity and nurturing. As a producer and consultant, my role is one part psychologist, one part narrative (or nonlinear) writer, one part creative director and one part bad cop. I’m regularly contacted for university guest lecture appearances and public discussions about media literacy, visual communications, storytelling and ethics in journalism. Teaching is a two way street. I learn a lot from students no matter their age.
I live in the heart of downtown Chicago. I catch FemCom (female-written stand-up comedy) as frequently as I can and attend Tuesday Funk readings featuring local authors. I visit Gage Gallery and the Museum of Contemporary Photography at every chance. They consistently curate top shelf exhibitions that include a relevant local undercurrent. Music has influenced the way I produce and project manage. Twenty years ago I was a regular at Elastic Arts Revolution (when it was housed in a Logan Square church); Hungry Brain, and Hotti Biscotti. I was a fan of the Black Monks of Mississippi, Links Hall and other raw art collectives. Today, the friends who fortified those arts and music communities are still producing at Constellation and Stony Island Arts Bank to name a few. Hungry City Collective is cultivating an interesting hive for music experimentation and Constellation has fostered an unrivaled international jazz community. I appreciate that stamina and dedication. And, whatever Theaster Gates builds, of course I go. To recharge and recalibrate I go to the Boundary Waters, swim in Lake Superior, cook for friends from the garden on my friend’s farm, and hike off the grid.
Rail: When and how did the idea for this exhibition first spark in your mind?
Soenen: By 2003, I had been denied access to healthcare by health insurance companies repeatedly while employed, while working full time. In 2009, I was finally bankrupted by an avalanche of medical bill debt and health insurance denial. It was devastating. I shared this only with select family members. I’ve gone public with this experience now and am often asked during interviews “What did you have?” “How much were you in debt?” For me, it’s no longer about the what, but the why. The more I investigated and studied systemic Denial of Care (Medical Loss Ratios, Purging, Dumping, Appeals, Pre-existing conditions, Health Reimbursement Account, Experimental or Investigational Drug, Allowed Amount, Creditable Coverage, Benefit Period, et al) I learned the harm was intentional—by design.
I began to shape a group concept that would humanize the healthcare policy debate. There are many projects specifically about illness, but this work brings the conversation back to the body and the individual rather than “some people” or groups. Rather than polarize the conversation or be combative, our collective approach is to present evidence or experience and let the viewer/reader/visitor come to their own conclusions about how they define health.
Rail: “SOME PEOPLE” (Every)Body includes contributions from photojournalists, physicians, nurses, artists and essayists—how did you decide on this mix of perspectives and what will it show the audience that they couldn’t see if not for this blend?
Soenen: It is extremely important to me that the perspectives within the group are diverse geographically, across age, and experience. Some contributors travel the world eight months a year for National Geographic and other media outlets. Others are quadriplegic and paraplegic and work from their studios. I chose the Bridgeport Art Center gallery space for the live exhibition in October because it is All Access, All Inclusive and All Abilities.
The project is garnering international attention because people see themselves in it. Some people respond to photojournalism, others to art and writing. Certain people may react viscerally to the writings of Drs. Chip Thomas and Ayanna V. Buckner, while others might react to the explosive three-dimensional art by Michael Murphy, Crystal Hodges, Liviu Pasare and David McCauley. Viewers may be moved by the raw photojournalism of George Etheredge or more ethereal and conceptual work of Laura El-Tantawy and Cat Gwynn. The very personal essays from Alyssa Schukar and Ed Kashi may resonate for some, while the hard-hitting imagery by Mark Eric Trent and Timothy Fadek impact others. Matt Eich, Michael Christopher Brown and Brenda Spielmann share very personal perspectives about family in this exhibition. The project also includes Kristina Isabelle and other dancers who represent the fluid and mercurial organism that is the human body.
Rail: Each image is moving in its own way, but I was especially arrested by the series of photographs by Melissa Spitz documenting her mother’s years’ long ups and downs with severe mental illness. The shot captioned “The last time Dad remembers Mom being ‘Normal.’ Bumbershoot-Seattle, Washington, 1994” on the @SomePeopleEveryBody Instagram made me cry for the way it captured the durational nature of the challenges of loving and supporting someone through such a disease. Are there particular contributions that you find particularly stunning or that encapsulate what you’re trying to communicate through this show?
Soenen: That image is a fantastic example of a photo that isn’t photographically sophisticated or technically impressive but it is gripping all the same once the viewer reads the context. The work of Melissa Spitz reminds us that health is at the core of family structures, social structures, work communities, relationships and societal fabric. When one person is ill, injured, disabled or dying, many are often overwhelmed.
Like the physical body, society and the body politic are interconnected. Melissa is very skilled at making the invisible visible. She reveals her inner world by documenting her mother’s illness and her own relationship with her mother.
Many photos in the project are arresting, gripping, delightful and beautiful. Mark Richards celebrates the body at its peak performance athletic potential while trail running in California, and also shows us the same body in decay. In the essay by Misha Friedman, we learn that for some people, home visits by physicians are the only socialization and touch they receive in their week. In Heather Perry’s image of her son swimming, we learn she became ill while pregnant with her son and didn’t have health insurance. In the images by Marijke Thoen we see birth and the strength of the body when nurtured and supported. Photographer Cat Gwynn addresses connection with strangers and the perils of prejudice; Nolan Ryan Trowe shows us a day in the life of a disabled person; Cheney Orr shares his father’s decline to Alzheimer’s; Eivind Natvig discusses environmental health; and Rubén Salgado Escudero shares a moment of compassion, human dignity and love.
Rail: Part of your mission is to “Humanize the Healthcare Debate” and the title “SOME PEOPLE” (Every)Body begins to do that right away—can you speak to the connotations and implications you help those words have as they set people up to experience the work?
Soenen: Over the course of five administrations in the United States, healthcare policy is consistently addressed in a combative manner. We often hear language within the debate such as Some people knew what they were signing up for when they entered the military so they should expect PTSD. Or some people should work to receive Medicaid if they are disabled. Some people between the ages of 18-26 are high risk so we’ll insure them on their parents’ health insurance plan. Some people should stay on their spouse’s coverage rather than seek individual coverage. Some people should be more responsible—living irresponsibly leads to poor health and high costs. Some people drain the system’s resources by over-utilization. Some people shouldn’t qualify for tax-financed care; Some people should have saved up for a rainy day to pay their medical bills. Some people are so irresponsible. We’ve also heard new language coming from Capitol Hill recently. Terms like “The Functionally Uninsured” and “The Recently Uninsured” and “Universal Catastrophic Health Insurance.” The language within the debate doesn’t factor in circumstance, chance and luck. Exactly who is “some people?”
Rail: Why hold this show in Chicago as opposed to anywhere else? And of course, it’s digital, too, so how do you see the physical and internet components working together?
Soenen: Chicago is my home. I have worked in Washington, DC and New York over the years, but I chose to produce this project in Chicago because it is an international medical center. The healthcare policy debate has never been louder. There are many teaching hospitals here, several nursing schools, and also Health Care Services Corporation (HCSC) is headquartered here, which oversees five Blue Cross Blue Shield plans in multiple states. Chicago is home to Physicians for A National Health Program, Students For A National Health Program and CommunityHealth which is the largest free clinic in the United States. People come from all over the world to get care at The Shirley Ryan Ability Lab.
In addition, Chicago has a strong pharmaceutical and medical supplies industry here that includes Abbot Labs, AbbVie, Baxter, Medline and many others who are immersed in the national conversation about Best Practice, ethics, the healthcare economy and public health. The dialogue about social values has never been more amplified. Senator Dick Durbin of Illinois recently announced Chicago HEAL Initiative calling on hospital CEOs to submit proposals to improve access, affordability, and outcomes. CommunityHealth launched the All In campaign last year, as well, which aims to improve access and outcomes. These conversations are happening across the private and public sector.
Combined with the legal community, and Chicago is a flagship policy city for healthcare. Not only is the world watching to see how we reduce the epidemic of trauma in our city, but physicians, nurses, civic leaders and executives across industries are now asking: Are we healthy?
Rail: You say in your summary that “This is not an exhibition about illness,” so why is it not, and what is it about? How would you personally define the concept of “health” and what position it should occupy as a priority in society?
Soenen: I define health as freedom from anguish. On the days when I am cycling, hiking, paddling or swimming, I’m equal parts amazed by, and thankful for, my body. What an astonishing organism.
Illness gets far too much real estate in the healthcare policy debate. Health is in large part also about prevention, nutrition, public safety, domestic safety, early childhood development, mental health, reproductive health education, physical maintenance and emotional wellness. Prevention is a key provision of sound healthcare philosophy.
Friends and colleagues are stunned to learn I don’t believe Healthcare is a human right. I believe healthcare is a moral, ethical, economic, social and cultural value to which the United States should assign fiscal priority. Similar to highways and mass transit—where everyone has access to it and then we try to minimize risk and injury—it’s a universal need. Good health keeps people moving.
Until the United States government and people define what health is, it’s difficult to have a constructive debate about policy. Many chronic illnesses are caused by poor environmental health. Many health conditions are preventable with early intervention and access. We should all be asking in our respective professional and civic roles: Is healthcare best approached as a fluid component of human social structures? Is health a necessary cornerstone of a healthy society wherein individuals continually seek to maintain and improve their quality of their life? Is health a foundational cornerstone of a strong economy, mental wellness and public health?
Rail: Another term you use is “economic dignity.” Can you say more about what that is and why it’s desirable? Because to be candid, I wonder sometimes if certain chunks of the population are immune or inured to the suffering of other beings no matter what, or that they are incapable of caring for or showing compassion to the plights of strangers. I try not to be pessimistic, and I hope I’m wrong. But what do you think, and how will this show reach the people it needs to be reaching? How can it change hearts and minds in the healthcare debate?
Soenen: Eugene Sperling writes about economic dignity. The central focus of economic policy should impact human wellbeing as opposed to an ideological, theological, or theoretical debate over whether services should be delivered by free market mechanisms or taxpayers in the United States. For example, Americans measure economic progress first and foremost by "growth.” People who invest in health insurance companies have experienced quarter after quarter “growth.” A) How is that achieved? B) Is that sustainable? C) What are the business practices that are propelling that year over year “growth?" Investors might reflect on the source of their dividends. Should people consider illness, injury, disability and death a hard asset or a passive income investment?
Rail: Related to the above, who do you hope will come and experience this show, and what do you hope they’ll come away from it with?
Soenen: We are aiming to bridge that “Us” / “Them” divisiveness by actively reaching out to biotech executives, health insurance executives, pharmaceutical industry leadership, medical students, nurses, social workers, emergency room physicians, trauma reduction counselors, physical therapists, behavior scientists, anthropologists, families, business owners and most importantly, board members and shareholders in the health insurance industry. The body is a living organism that requires a lifetime of maintenance, upkeep and nourishment to remain healthy. The body is susceptible to illness, accident, injury and disability. A powerful thing happens when you extract people from their work-a-day contexts and mix them all up together. They see commonality. Opening night and the run of the exhibition will provide that educational forum.
Rail: Is there any additional “required” or even “suggested” reading you’d recommend to people who are curious to learn even more as a supplement to the show, or for people who can’t make it to Chicago to experience it in person?
Soenen: Absolutely. We invite people to engage not only in the United States, but internationally, as well. We encourage people to read each essay and track news updates on Instagram @SomePeopleEveryBody. The website will launch this summer and include more ways to engage and participate.
Decades of canary-in-the mine books by economists, physicians, whistleblowers and behavioral scientists have been published about healthcare since the early 1980s that include statistics, data, lawsuits and stock market earnings reports. Barbara Ehrenreich has written extensively about the uniquely American vernacular of illness, as did the late Chris Hitchens. Attorney Kate M. Nicholson is writing frequently about the approach to health. More and more physicians and surgeons are engaging politically with Op-Eds, which I appreciate because they are on the front lines.
I gravitate toward philosophy, science and economics. I’d recommend an essay by Verlyn Kinkenborg called We Are Still Only Human (New York Times Magazine, 1996.) Also, issue 21 of Creative Non Fiction called, Rage & Reconciliation: Inspiring a Health Care Revolution which features writing by patients, lawyers and physicians. That collection of essays was published in 2003 and all of the writers’ predictions have actualized. The Tragedy of the Commons by British economist William Forster Lloyd and related work by American ecologist and philosopher Garrett Hardin is compelling. And I read anything and everything that Rachel Aviv writes as health is at the intersection of most every topic she covers.
Rail: Finally, why do this show now?
Soenen: I feel a sense of urgency and responsibility. I hope the work of this extraordinary group will make people stand still for a minute and contemplate their own philosophy of health—and also consider the tenets of compassion, humility, empathy, and interconnectedness. You can’t fathom what another person has experienced until you pump the brakes on speed, haste, and greed, stop, sit down with that person, and listen.