"Even at the appointment where the doctor was giving a terminal diagnosis to my wife and I, he was looking at this watch. He was trying to squeeze that in to a 20 minute appointment."
-Evans Wilson, Interviewed by Chelsea Ng
Feeling rushed and unheard by our medical providers when seeking care can be discouraging and is something that many of us have experienced. When someone with a chronic illness/disability regularly experiences this, the impact can be profound and lead to poor health outcomes. Portraits of Humanity (PoH), a student-led project founded in 2021 out of the University of Washington (UW), aims to address this through narrative and art.
I sat down with co-founders Chelsea Ng and Amy Duong, along with current president Jeanne Nguyen, to talk about their passion project and what they hope to achieve. Chelsea is currently a post-grad and was a biology major when she co-founded PoH. She is currently pre-med and is a 1st generation Malaysian immigrant. Amy is currently a post-grad and was an art major when she co-founded PoH. Jeanne is currently a senior at UW studying art history and neuroscience. Jeanne and Amy are both 2nd generation Vietnamese women who identify as queer.
PoH pairs people living with chronic illness/disabilities with undergraduate and graduate students who are interested in healthcare fields or are already studying or working in healthcare. The patients are interviewed by the students, as well as works with a student artist to produce a written third person narrative, along with art that visually tells the story. These are then gifted to the storyteller. The intention of the project is to foster empathy within the medical profession by humanizing people with disabilities, while simultaneously providing patients with a platform to tell their stories so that they feel heard and can contribute to positive change.
From left to right: Carmel Aronson w/art by Anna Baatz, Joey Onchiri w/art by Bill XLong, Marianne Wilson w/art by Abby Evans, and Shannah & Emmalyn w/art by Kain Yuan.
PoH came together organically when a small group of students from all different areas of UW came together. Most of them were from the medical humanities journal Capillaries, whose mission is to "provide the UW community with the opportunity to reflect on their experiences with medicine, healing, illness, and/or grief through prose, poetry, and artwork." The question "how do we improve the doctor-patient relationship?", according to Chelsea, was how this work got started. This led them to the Seattle Cancer Care Alliance where Kathleen Dorcy, Director of Research Development, helped them brainstorm. They decided to focus on people living with chronic illness/disability because of their long standing experience with healthcare. Chelsea explained,
"We want this to be something that we take with us as we go further...the importance of putting people first. I feel like as we go through medical school, this is just something that's not really a priority. It's all about learning the scientific research, and the human part of it kind of gets left behind sometimes. This was something that was really important to us to champion and highlight."
Amy, who organizes the art component of PoH, shared how art came into play,
"I was kind of having this identity crisis between art and medicine because I was interested in both sectors and there's rarely any crossover, aside from medical illustration that you see in textbooks. I think it's so interdisciplinary to see how art intersects with medicine...I think storytelling is such a beautiful means of communication...a valuable practice that can be translated so well into art...It's just a really beautiful merging of worlds."
“While she did not yet fully comprehend her change in identity with being visibly disabled, Carmel began to notice as she took the bus to work. As she boarded with her oxygen tank in tow, she noted a few people staring at her...Carmel explains: ‘I was a different type of other than I had ever been in my entire life.’ She describes this as the transition of being able-bodied in an able-bodied world to being chronically ill and disabled in an able-bodied world.” -Carmel Aronson, Interviewed by Jeanne Nguyen
PoH has since evolved from its founding to seeing the value and benefit of patients' stories to both students and the patients themselves. They pivoted away from the doctor-patient relationship to instead focus on the community setting and how they can positively impact students and patients.
The majority of the interviewers recruited into the project are pre-med students. The project organizers hope these students will carry their experience through medical school and beyond, resulting in empathetic and compassionate caregivers. Jeanne explains the impact she hopes PoH will have on both medical students and current providers,
"I would like to see more people get involved with medical narrative...there's that really big loss of empathy as you go through those years of [medical] training...Being able to rekindle that empathy for each individual patient without experiencing emotional burnout yourself is very important. We're hoping that our narratives and our art can give that pathway to rehumanize yourself along with the people that you care for."
While the primary intended audience for these narratives are medical practitioners, the organizers of PoH hope to positively impact the general public, pre-health students, medical professionals, and patients as well. Chelsea explains,
"If we look at it from the patient side, we hope that this can be...a reflective kind of activity. A lot of them don't really get this chance to lay out their whole life story or at least choose a narrative that they would like to see themselves in or share. A lot of them would love to share this with their friends and family, with the people around them, because a lot of people see them as just a caregiver or in one facet of their identity. It's really important to them."
While anyone living with disabilities is invited to participate in the project, the organizers would like to tell more stories by People of Color (PoC). Historically, PoC have a lot of "medical mistrust," Jeanne explains, because of the history of racist medical experiments the government conducted, particularly research projects that were ethically problematic. This history is not central to the medical curriculum and are often addressed in passing or on the periphery of education in healthcare. For PoC communities, Jeanne believes that "when you're being invited into their sphere as a guest, they should be treated with respect."
"That's something that is often overlooked. There isn't a space where you can bring in your culture to make you feel more comfortable in a place that is very intimate. I think it's important to acknowledge that you shouldn't have to acquiesce that to get good healthcare, to get good access, and to have someone understand you on that intimate level."
“With all these accomplishments under her belt, she realized there was one box that she hadn’t checked yet: having a child. In 2006, she gave birth to Mateo. ‘He was the most beautiful baby I’ve ever seen,’...When Mateo was 6, he was diagnosed with autism...Perhaps because of how she grew up with sickle cell, she made it a point to avoid raising him as different. ‘I never wished him to feel like he was any different,’ she said, ‘To me, he was just a kid.’” -Marianne Wilson, Interviewed by Chelsea Ng
The goal with PoH is to recognize that patients should be able to both have their culture and identity in a healthcare space and still be respected. This is how, Chelsea explains, they train their interviewers,
"A person who is White and dealing with a chronic illness is not going to have the same experience as someone who is Asian American or Filipino. Those two experiences are fundamentally different and we really want to be able to highlight those things and be able to listen to those stories...and how we, as future health care providers, take note of that, not to ignore that part of them and how we can be aware and cognizant...Intersectionality is something that we want to emphasize for our students as well as recognize for BIPOC with chronic illness."
Sharing more stories by PoC living with disabilities is important because "BIPOC stories matter," Jeanne argues, "because they're extremely underrepresented in almost every aspect of America...and if there's any way to level the playing field, it starts with representation and amplification of voices."
These stories also provide an opportunity for PoC to see themselves reflected in important stories. "You can resonate with stories that aren't similar to you," Jeanne shares, "but also there's not a lot of stories that are similar to BIPOC stories because they're not out there. They need to be more out there so people can understand what diversity really looks like." Amy adds, that for PoC, "this is a chance for you to share things that may be vulnerable, but may also be connecting to someone else who is experiencing the same thing and partake in something that could possibly lead to change."
An unexpected outcome of PoH has been the lasting connection between participants. One of the patients, for example, asked their interviewer to accompany them to a medical appointment because they were such a presence in their life. Cultivating relationships and connecting to community has been rewarding and beneficial to everyone involved.
PoH is actively looking for participants. If you are a person living with a chronic illness/disability and would like to contribute to this project, please contact Portraits of Humanity at portraitsofhumanity.poh@gmail.com. The project is open to everyone, and they would like especially like to share more PoC stories.
Visit their website at Portraits of Humanity or follow on Instagram at @uw.poh.