English Professor's Research Focuses On "Invisible Illnesses"

A scholar of 19th-century American literature, Dr. Vivian Delchamps is using a 21st-century medium to show her Dominican University of California students the connections between how women authors from the 1800s articulated their experiences with illness, pain, and medical diagnosis in ways that still resonate with people living with disability and chronic illness today.

“Usually I don’t get to talk about social media that extensively, so this is an exciting opportunity to connect some of the things that I think are so important from our history to the present day,” says Dr. Delchamps, assistant professor of English in the School of Liberal Arts and Education.

“Much of what I write about and argue is that women writers who wrote about their illnesses and disabilities of the 19th century had a way of writing about disability in a way that resonates strongly with how we think about it today.”

While the term “disability” held different meanings in the 1800s, Delchamps argues that writers including Emily Dickinson, Charlotte Perkins Gilman, and Frances E.W. Harper used literature to “supplement diagnostic ways of knowing and capture the raw potential of disabled embodiment.”

“The language and medium are dramatically different, but there’s a clear through line in the messages from the 19th century to the 21st century as authors try to give a voice to what it is like to live with a disability,” she says.

Take, for example, the time around the American Civil War when the United States was facing deadly new epidemics while simultaneously seeing disabilities emerge as a result of the war.

“The ways people described the sense of isolation and the frustration with medical authority really connects to modern perspectives in a way that I think surprises a lot of people, but it’s a good reminder that in American history things don’t just suddenly change at the flip of a switch - they evolve. Our understanding of disability is evolving, but it's not completely separated from what it was like back then.”

In a recently published essay titled “Invisible Illness Narratives in the United States,” Delchamps examines how people have turned to social media to reflect on their experiences living with an invisible illness – medical conditions that deeply impact an individual’s mental and physical health but are not verifiable by medical data or physical examination. 

This modern form of storytelling, she states, invites scholars of the health humanities to better appreciate the value of community and the importance of combating stigma.

“When invisible illness narratives are circulated widely on social media platforms, they teach physicians and the general public about the embodied and social realities that may accompany life with invisible illnesses,” she notes. “These perspectives are highly significant in today’s political-medical moment, for they communicate symptoms and combat ableism in formats that are easily accessible and shared.”

Storytelling also can highlight many of the systemic issues that arise when people living with disability feel disregarded by the medical community.

“There're myriad continuing issues of racial and gender discrimination as well as ableism, which is discrimination on the basis of ability, or assumptions about someone's mental health.”

Delchamps earned her BA in English with minors in Dance and French from Scripps College and her MA and PhD in English at UCLA, where she also studied – and later taught – in the Disability Studies program.

“I'm extremely passionate about what is effectively anti-ableist studies,” she says. “It's really fascinating to learn how disability has been marginalized.”

A dance instructor and disability justice advocate, Delchamps serves on Dominican’s Diversity Action Group. She also recently worked with REPAIR: A Health and Disability Justice Organization and the UCLA Center for Accessible Education.

At Dominican, Delchamps introduces her students to disability studies concepts in her Effective Communication courses.

“I am always delighted by how eager the students are to learn about ableism and to learn about disability from various perspectives,” she says. “The second you start to talk about disability, you start to realize how many problems there are with accessibility and how frustrating it can be. It really starts to quickly dawn on students that while disability seems like this very tiny minoritized group, it actually impacts everybody in every family.”

It’s through storytelling that students begin to understand and also discuss their own experiences with disability.

“Students end up becoming very excited to talk about ways that ableism has hurt their families or their friends, or themselves, and I think that realization is really thought provoking, and it gets them excited to write about and talk about that issue.”

The medical community, Delchamps notes, is becoming more aware of and accepting of invisible illnesses. Last summer she taught medical humanities at the University of Texas Health Medical School in Houston.

“I think people dismiss English as not very useful, but it is so crucial. For physicians, listening to people's stories is at the heart of a lot of medical practices,” she says. “There are also physicians who engage with these social media websites and groups who have chronic illnesses and invisible illnesses just like their patients.”

The health humanities also is growing and becoming more mainstream.

“Medical schools are putting more emphasis on recognizing the value of the humanities, because physicians have to be able to understand things in a systemic way, instead of only looking at individuals,” she says. “The humanities are, of course, fantastic for addressing problems affecting much of humanity.”

Delchamps is looking forward to directing the Performing Arts and Social Change minor at Dominican. In the fall she will teach “Shakespeare for Social Justice” and the following year will teach a course she designed, “Feminist Disability Ethics in Literature.”

“I’m just delighted because the courses link my passions for social justice, dance, and literature.”