Co-authored by Elizabeth Jameson

Howling at the moon: Six interviews with artists who redefine illness and disability

There is not one definition of illness, nor is there one way to experience disability — yet mainstream media’s depictions remain limited. Nearly forty percent of Americans live with illness or disability, and our stories need to be told, but many of us are still isolated and invisible. We sat down with six creatives who are working to change that.

A filmmaker losing his sight, continuing to make films.

A poet transfixed by the contents of your nightstand.

An visual artist rummaging in hospital garbage bins for inspiration.

A writer breaking the silence only to discover that she’s not alone.

A doctor transfixed by the power of narratives.

A podcaster finding freedom in discussions of mortality.

The following interviews present varied perspectives from people ranging in age, with different diagnoses, and different disabilities, each with a unique relationship to illness. Parallels ebb and flow through these conversations, unprompted. For some readers, the following may be a revelation. For others, these stories may resonate with your daily experience of reality. However you relate to illness and disability, we invite you to tune in and connect with what it means to be human.

Regaining creative control through film

Jason DaSilva is a director, producer, writer and disability rights activist best known for the Emmy Award winning documentary, When I Walk. Like Elizabeth, Jason is also a quadriplegic. Jason sees his work first as a form of activism, and secondly, as a way to keep creating. He aims to change the face of disability to even the playing field for those of us navigating the world in wheelchairs, living with chronic illness, and/or experiencing MS.

Jason engages in “participatory filmmaking” — meaning that he is both the subject of his films and the person with creative control. He blurs the roles of filmmaker and subject. His films deal with the mundane drama of a person navigating the world in a wheelchair. What unfolds when there are no curb cuts in the middle of the pouring rain? No taxis that can take a wheelchair? No blue button on the outside of an establishment?

Jason also reveals somewhat of a culture clash between those with certain abilities and those without. How do people react to those of us in wheelchairs? Do they try to help? If so, what’s their strategy? The interactions fall on a spectrum, ranging from disability-illiterate to attempted-ally. In this video, he captures the various reactions when he needs assistance.

Jason’s MS has progressed, leading to partial blindness. He keeps filming, adjusting to as a filmmaker who cannot see. He is a realist, and his films reflect that. His work is gritty and raw. Jason films experiences that have rarely been self-documented, centering commonplace, invisible sagas. One feels the tragedy of his disability alongside the dogged strength of the human spirit.

“I’m not the only one doing this work, but it needs to be done, as much as possible. I like to make people informed enough to make their own decision about their perspectives. I don’t want to teach — I want people to learn for themselves.”

Quads (people who do not have the use of their arms and legs) are normal people, a part of society. It’s time to promote honest representation that can replace the exclusive norms dominating mainstream media. While his movies have been embraced by the mainstream film-making community, his “target audience” — the group who he wants to make space for — are people living with disability. Our lives are interesting. Our lives are important. We can be the main character AND the director of our lives.

Tools for survival in unexpected places

Emma Jones, founder of the Nightstand Collective, showcases photographs of nightstands belonging to people who live with debilitating illness and/or disabilities. As a culture, we shy away from illness. We are not quite sure how to discuss it, so we don’t. But illness and disability is real, and in the lives of so many. We need the space to be heard — not so that the listener can fix us, advise us, or comfort us. We need the listener to simply witness, and acknowledge.

Emotions are a part of what it means to be human. Emma photographs our nightstands, our sacred, intimate spaces, in hopes of breaking down myths and misconceptions about what people are dealing with and how they deal with it. Her goal is to demystify and debunk stereotypes that typically eclipse people living with chronic illness.

Left to right: The nightstands of people living with Chiari Malformation, Endometriosis, and Chronic Migraines

People living with illness and disability are sometimes seen by the public as weak or frightening. The narratives of the Nightstand Collective reveal that we exhibit creativity, resilience, adaptability. The nightstands reveal “the way life expands and shrinks” after diagnosis. Gathered on a little table, the objects closest to those of us who spend a majority of time in bed represent a framework for survival. Emma makes public the “snapshot of someone’s life that the medical profession doesn’t see… a holistic look at how we cope.” These “amulets” are tools for the spirit, mind, body, and emotional self.

In addition to showing medical professionals a new side of the patient, Emma wants able-bodied, “well” people to pay attention, too. We will all be impacted by illness or disability at some point in our lives. How do people already experiencing it deal with it? What can we learn from one another about connecting with our bodies and ourselves?

The nightstand of someone dealing with: Fibromyalgia. Obstructive Sleep Apnea. Hypopnea. Premature Ventricular Contractions. Premature Atrial Contractions. Hypothyroidism. Hashimoto Thyroiditis. Asthma. Anxiety. Depression. Insomnia. Spinal Stenosis. Poly Arthritis. Arthralgia. Pre-Diabetic. Chronic Migraines. Chronic Headaches. Iron Deficient Anemia. Vitamin Deficiency. IBS. GERD. Hypertension.

Sometimes Emma gets feedback that the series is “sad.” She feels that perceiving the images as “sad” is missing the point.

“Lean into the uncomfortability. Get quiet with these objects. Get to know the story behind them. Look deeper to find grief, love, determination, resilience.”

Emma emphasizes that for her, the most painful aspect is not the disease or the symptom. Isolation is the worst part. And this type of shared storytelling breaks down that isolation. “We’re going to be telling those stories, no matter what — and we adapt mediums based on what works for us.” The experience of disability and illness is interesting, and important. To everyone.

Discovering community, coming out of isolation

Allie Cashel is the author of Suffering the Silence: Chronic Lyme disease in an Age of Denial and is co-founder and president of The Suffering the Silence Community. Her priority is depicting the diversity of experience within the illness and disability community, breaking down stigmas associated with that experience. She implements projects raise awareness, change perceptions, and lift the voices of people living with illness and disability.

“When people think about it in their minds, [illness is] not as complicated and layered. As a culture and society we are pushing it to the fringes when it should be at the forefront. We are all touched by this, and if you think you don’t know someone you are wrong — they just haven’t shared it with you yet.”

A recent project produced by Suffering the Silence, Illness and Identity, is a series of photographs of people living with illness. The exhibit features a diversity of age, race, gender, sexuality, diagnosis. As the photographer takes pictures, people share their stories. This active participation creates a rhythm and a natural, authentic flow between the photographer and the participant.

Jobi Calixte, a participant in the Illness and Identity portraiture series

“We need to be talking about things that are hard to talk about. Photography captures a moment that we all have access to.”

Allie has conducted over 80 similarly styled interviews. “I’ve learned so much, more than I could have imagined,” she tells us. “I thought that humor was so taboo.” Before she got more involved with this work, she thought that when she was sick, she was sick, and then when she was feeling healthier, she had to do everything at once. There is a dynamic spectrum within “sick” and “well”, and other’s varied experiences have shown her that she doesn’t have to keep so religiously to these distinctions.

“I felt so isolated for so long, but discovering the depth and breadth of the problem was both devastating and a relief. The fact that I was not alone, and now I felt the exhilaration at discovering there any many others like me, waiting to tell their stories, needing connection.”

At first, Allie created primarily for other people living with illness and disability, hoping they would see the work and think, “I can do that too — I can be represented in art and media.” Now she creates both to uplift and to increase visibility and awareness among audiences that aren’t as directly impacted by illness and disability.

Stories about illness and disability, collected by the Suffering the Silence Community

We discussed the difficulties associated with trying to exhibit a show that focuses on illness and disability. Illness and disability still hold such a stigma that some spaces shy away from the subject, preferring not to scare off their audience. This perception of the work as “sad” is a common theme for those of us generating content around illness and disability. Sad is so one-dimensional. Illness and disability have a reputation of being dark and scary — a reputation that is shutting people out. Those of us who create art, who advocate, who speak out on the subject of illness and disability know that it is not always a dark, sad experience. Allie emphasized the varied and complex emotions associated with illness — pride, grief, pain, loss, humor, victories.

Almost 40% of our society lives with some form of illness or disability, yet that percentage is not represented in our mainstream media. People need to tell their stories. They need space for it, and organizations like Suffering the Silence are dedicated to creating those spaces.

Raw, uncensored wisdom

Cara Gael O’Regan is New York-based multimedia artist, health advocate and freelancer. Drawing on her own lived experience as a patient, her artwork centers themes of the body, visibility, chronic pain, and mortality. She is the creator of In Sickness + In Health, a podcast explores our relationships with our bodies, and issues at the intersections with chronic illness, disability and healthcare.

When I reached out to Cara, she admitted that she hadn’t been a very good patient advocate in the past year — her health had an unexpected upswing, so she spent a great deal of time pretending to be “normal” (whatever that means). I was reminded that individuals who are trying to transform the narrative of illness are also allowed to be imperfect. We are human. We are not superheroes. There is no right or wrong way to be an artist with illness and disability, creating, generating, and pontificating the myriad ways to view illness and disability.

“This last year I’ve been more productive as a ‘contributing member of society’ — I’ve been working and making money, but ironically haven’t been able to step into the role of patient advocate.”

How are we expected to be, and what does that mean for our health?

Series of self-portraits expressing her physical experience of living with complex chronic illness during an extended Chronic Migraine flare.

I asked her about her podcast In Sickness + In Health, which I discover she has 29.5k downloads globally. Her listeners live all over the world, including Australia, Canada, the UK, Sweden, NL, NZ, Germany, Ireland, Denmark, Brazil, Singapore, Ecuador, Japan, and Colombia to name a few. The cross-cultural impact of discussions about illness and disability is a testament to how universal these issues are. Yet Cara does not make wide-sweeping, change-the-world statements. The reason she started a podcast, and continues to make art about her body?

“I’m just trying to make sense of an otherwise nonsensical experience of the world and my body. I’m trying to get through the day, make sense of my life… make my life worth living for me. If along the way, I also help some other people, that’s awesome.”

I think she’s being modest. Cara is a systems thinker, putting the experience of her body in context, zooming in and out. While she may be on her own journey, her approach impacts many others along the way:

“When I set out to do the podcast, I wanted to bring awareness to these issues. In retrospect, I realize I simply needed to talk about this stuff. I needed to process what I had been through with others. Then you realize, it’s not just me — it’s a bigger problem — a systemic problem. This is not just us… it’s a social justice issue.”

I asked Cara to elaborate. She talked about what she learned through hosting international guests on her podcast. It’s not just the American healthcare system that is failing. “Just because you have access doesn’t mean you are getting the care you need.” We talk about access constantly, but what happens when you do have access, but you still can’t find the care you need to survive?

We discussed recurring issues patients face — how tiring it is. “Sometimes I feel like I know too much,” Cara admitted. She lives several with rare (or rarely diagnosed) conditions: “if you are a patient that doesn’t comfortably fall into categories our medicine has delineated, you are either bounced around or are shut out.”

She shared a painful story of a friend who passed away after an ER visit due to a complicated combination of circumstances, further complicated by her providers’ unwillingness to trust her patient expert knowledge of her body and medical history. These are the stories we don’t bring up, because we do not want to seem like we are blaming the hands that heal us. #NotAllDoctors might trend — we don’t want to alienate, so we play nice.

Self-Portraiture project for the 2016 Medicine X Storytelling track, depicting Cara’s experience with a migraine flare

Cara was open, candid, and complicated. We need more people (and more podcasts!) using voice, vision, and artwork to make illness and disability seen; because while it is a part of our everyday lives, we have yet to fully acknowledge or understand what it means for society.

Reclaiming your story, your self

Annie Brewster is a graduate of Harvard Medical School and a practicing Internist at Massachusetts General Hospital in Boston. She is also a patient, diagnosed with Multiple Sclerosis in 2001. Annie founded Health Story Collaborative (HSC), a nonprofit storytelling project that keeps the patient voice alive in healthcare, harnessing the power of stories. HSC has multiple programs designed to provide patients and their loved ones with opportunities for story sharing. Annie was inspired to found HSC in part due to the lightning-fast storytelling style of our modern age, especially within healthcare.

“So much of what we hear in terms of stories of illness and healing is curtailed — polished. Media sound bytes don’t honor the authentic complexity of the story.”

Listen to patient stories via Health Story Collaborative’s Sound Cloud here

Annie is fascinated by narrative, and by how elements of storytelling empower us. The stories that she publishes through HSC are, as she says, messy. These are not always stories with happy endings or predictive narrative arcs: they’re real life.

“The idea of ‘finding the silver lining’ is overly simplistic. It is my hope that through structured storytelling people are encouraged to reclaim their lives as they are, and to integrate the dark and the light. This feels so much better.”

Annie describes the storytellers she works with as teachers and role models. Stories of illness and healing are relevant to all of us. “It might happen to you. It will happen to someone you know if it doesn’t happen to you.”

Annie is both patient and provider. She interacts with fellow patients in a variety of settings: in her personal life, through her storytelling project, and in her clinical work as an urgent care provider and a doctor at a Mind-Body clinic.

“As someone with MS, [storytelling] has been immensely helpful to me.
I went through a long period of denial, secrecy, and rejection. Ultimately I had to integrate it, accept it, and move forward. Now I can look back retrospectively and piece [my own narrative] together… integrating this illness into my own identity, using it as a positive tool, reclaiming my own agency. Part of why I initially hid my diagnosis was that I didn’t want to feel burdensome to others. I was so wary of people thinking differently about me. But ultimately it made me feel better to say it out loud, to own it. It’s a part of who I am.”

Annie found herself asking, “How can we make [our illness] a part of our identities, something that, while challenging and horrible, is still part of us and ultimately makes us stronger, or deeper, or more empathetic? How can we use our stories to help ourselves and help others?”

“We find different ways to move forward, working with what we have and creating a new path. Medicine often slams the door on this kind of thinking. We need to create the space for authentic story sharing, in order to empower individuals, build community and ultimately transform healthcare. To hear one person share is such a relief to people, because it opens people up, opens up a part that people haven’t allowed to be visible.”

Making themes of illness and disability visible in everyday life gives people the opportunity to engage. It facilitates an exchange of humanity, helping us to own our realities, feel more present in our lives, and connect with one another. This process takes courage. It’s not about getting better, or overcoming disease. It’s about owning and accepting, and ultimately loving, who we are.

Everyday life as art: Heather Corini Aspell

Heather puts glitter in her leftover IVIG bags, experimenting with medical supplies , the role of being a caregiver for oneself, and performative art.

Heather Corini Aspell is a visual storyteller, artist, and patient advocate. Heather uses her social media presence, photography, and mixed media to express the realities of living with multiple chronic illnesses and disabilities.

I first discovered Healther’s work through Instagram. Her feed is full of photographs documenting the intimate details of her life experience — which happens to include doctor’s visits, infusions, infections, medications, good days, and bad days. Social media sites like Instagram tend to be selfie-overload, with each person trying to look like their version of “perfection.”

Heather takes the selfie to a new level, showing us what is really going on in her life, posting images I have never seen before. She is fearless in her efforts to make sense of her own experience.

“I wanted to make art that communicates my experience as a patient. I was in denial about what was happening: I began to lose function, I couldn’t work anymore. The speed of my decline surprised me. Taking pictures of myself at the doctor’s office made it real. I got tired wasting energy trying to hide the ugly parts.”

Like several other artists we spoke to, Heather’s initial process was highly personal: a way to connect with herself and understand what was happening to her. Then, once she began sharing her images, she realized her story could impact others.

“I could use [art] not only to be seen but also to show people what it looks like to be disabled and/or chronically ill at a younger age than is typically accepted. My work shows others they aren’t alone. Young people using a mobility aid have gotten a lot out of seeing me using one as well.”

“I’m just being myself, being honest, authentic, and vulnerable about what it’s like to live with chronic illness. I’m doing it for me. I didn’t want likes… I just wanted to be heard.”

Heather discovered that these images and stories matter to everyone, not just people with similar conditions. She notes that “acquaintances who don’t live with chronic illness…would reach out to me and thank me for sharing. I didn’t think my healthy Facebook friends would find this interesting, but they do. People are more compassionate than I thought,” Heather muses. “They want to hear about the different ways we struggle… they may not be chronically ill, but they can relate to the feelings of being frustrated or saddened.”

Her work is also informative for those who don’t have any concept of what illness and disability can look like or mean. “For people who have no idea of how many pills it may take to manage a chronic illness, a bathtub full of pill bottles gives them a visual shock” that helps them understand more than any verbal explanation could. Imagery that puts these realities in perspective can shape people’s outlooks, both politically and emotionally.

A collection of photos of medication, injections, infusions and medical spaces (#medaesthetiques)

Heather’s goal is to give people a window into the reality of living with chronic illness, and the window that she has opened allows us to see past stereotypes about what illness and disability looks like. “There is a stereotype that if you are young, you can’t really be sick — that only older people need canes and walkers, or a disability placard.” Heather defies these stereotypes and invites us to face reality with her, reshaping our attitudes and assumptions.

Jason, Emma, Allie, Cara, Annie and Heather create work that sheds light on the subject of illness and disability, deepening our collective understanding of humanity. Let’s keep the conversation going, uplifting one another and acknowledging what it means to be human.

About the authors: Elizabeth and Catherine are a collaborative duo brought together by Elizabeth’s art practice, Jameson Fine Art. Elizabeth specializes in the intersection of art, illness, and neurotechnology. Due to the progression of MS, she is now a quadriplegic. Catherine is a writer and artist who helps individuals and organizations tell their stories. Together Catherine and Elizabeth write articles about art, illness and disability. Illustrations by Catherine., @jamesonfineart, @cxmdesigns

I am an artist and writer with a background in education and communications. Interests include storytelling, illness/disability, the arts, and gender/sexuality.