Results in Health Stories

Donna Lambers, a maternal/fetal medicine specialist, describes the impact on her medical practice and sense of self when her vocal cords are affected by a thyroidectomy for thyroid cancer.  She loses the ability to control vocal inflection. "For instance," she writes, "I’m unable to raise my voice at the end of a question... I can no longer tease or kid or be sarcastic with my family and friends, because it comes off sounding mean. My voice, having lost its cadences, is unpleasant to hear; and now, when giving perinatal counseling to my patients, I have no way to convey the empathy and emotion I feel for them..."  She describes with great insight the many ways this has affected her interactions with patients, their families, and co-workers, as well as the frustrations she experiences. The story could open up a discussion about the ways in which effective communication requires more than simply clear transmission of information and the taken-for-granted ways that we construct relationships and enact identities through subtle cues.  It also speaks to the challenges of this particular non-visible disability.

Andrew C. is a queer East Asian medical student who writes about altering his voice and pronunciation to perform what he calls "the most stereotypically masculine version of myself."  He describes having learned to do so as a child of immigrants, growing up in a suburban Georgia suburb and wanting to fit in.  In the essay, he analyzes why he continues to feel the need to do so in medical school.  He says he has yet to meet someone like him who is a physician, and so code-switching is required if he is to enact the implicit model of "competent physician" that is on offer to him.  He writes: "I am still carrying the heavy weight of my childhood notion that to be different is to be singled out as 'other'—and I fear that it may impact the outcome of my medical education. These vocal habits are a form of self-preservation. But when I reflect on my childhood, and my lack of exposure to queer-physician role models, I fear that I will be perpetuating the problem."

The essay is an eloquent example of why it is so important for health care providers to come from a range of identities and social positions.  It also speaks to the challenges for those providers who come from under-represented groups and why equity and inclusion require not only that we diversify, but also that we welcome and value the diversity that people bring.

The essay is brief enough to be read together in a class or workshop.  It is one of several essays from a writing contest by Pulse, an online site that publishes personal narratives about health care.

8 page graphic narrative structured around a conversation between a Japanese American college student and her grandmother. Each page is a collage of images, text and drawings, allowing for both discussion of the issues (aging, intergenerational relationships, queer identities) and the techniques and

“Crip Camp” is a Netflix documentary produced by Barack and Michelle Obama that traces the origins of the US Disability rights movement to a summer camp for disabled youth called Camp Jened. The film showcases the strong bonds formed at this unique camp that provided a place for self-discovery, authenticity, mutual support, and connection for disabled teens living in a predominantly able-bodied world. The film then follows a group of camp alumni who went on to become advocates for disability rights, putting political pressure on both state and federal authorities. Their tireless efforts eventually led to the passage of the historic Americans with Disabilities Act in 1990. Camper and staff member’s personal narratives are woven throughout the film, personalizing disability in a way that calls viewers to question stereotypes about disabled people, thus functioning as a tool for education and advocacy in and of itself. These stories, often heartfelt and humorous, touch on everything from personal relationships, sex lives, employment, and hierarchy within the disabled community itself. The documentary runs for 1 hour and 42 minutes and combines footage from the camp’s heyday in the 70s with present-day interviews with the attendees. 

This film could be relevant to classes on healthcare, disability studies, public health, or social justice to facilitate discussion about physical disabilities, advocacy and activism, healthcare policy, or intersectionality. The film could raise questions about the role personal narratives play in shaping public perceptions of disability and health, who counts as “all” when we think about “access for all,” and what patient-centered care can actually look like, as exemplified by the individuals at Camp Jened.

Text of Mia Mingus presenting at the 2017 Paul K. Longmore Lecture on Disability Studies at San Francisco State University, with a link to the video, posted to YouTube. Mingus is a queer physically disabled Korean transracial and transnational adoptee, who is a writer and educator of disability justice. The lecture focuses on disability scholarship with personal stories woven throughout used as persuasive appeal. She stresses that disabled people, including disabled queer individuals of color, are often overlooked in social justice movements and communities, and emphasizes the importance of including their experiences and stories. The main focus of this talk is the idea of “access intimacy,” which is a term she coined that refers to a deep, often unspoken connection between individuals who understand and accommodate each other's access needs, in the context of disability. It's the feeling of comfort and understanding when someone "gets" your access needs, making it easier for disabled people to navigate their daily lives. Access intimacy can exist with other disabled people, family members, or complete strangers, and can be as small as a knowing look and intangible as a feeling of familiarity. Nevertheless, Mingus describes how access intimacy is a powerful tool for liberation and a way to reframe the understanding of disability. Mingus argues that access should be used to challenge ableism and able-bodied supremacy and encourages shifting the responsibility for access from individual to collective responsibility.

This talk could be used to bring up discussions about disability and ableism, disability justice, interdependence, cultural competence and intersectionality, and patient-centered care.

Cami's story is one of several on this section of a site hosted by Children's Hospital of Philadelphia, which includes several stories of individuals who had polio.  Cami contracted polio as a child in 1954; this short personal story emphasizes the long-term physical and emotional struggles involved in overcoming the disease. Cami expresses concern about the current resistance to vaccines, particularly for diseases like COVID-19, and criticizes the choice to reject proven vaccines as foolish, selfish, and potentially deadly. Cami highlights the lasting impact of vaccine-preventable diseases and questions the wisdom of risking children's lives by refusing vaccination, drawing on her own experience when no vaccine was available for polio.

Cami’s story could be used to discuss the ethical and historical considerations of vaccination.  It could also illustrate the use of story for public health persuasion.

This NPR interview discusses Lydia's journey from being initially pro-vaccine to joining the anti-vaccination movement after a traumatic experience with her first child's vaccinations. She describes how online forums fueled her fears, leading her to reject vaccines for her subsequent children. However, Lydia's perspective shifted during the COVID-19 pandemic, prompting her to research and ultimately decide to vaccinate her children. The story highlights the role of misinformation in the anti-vaccine movement, the challenges faced by healthcare professionals combating disinformation, and the impact of social media. Lydia's experience also emphasizes the need for open dialogue, fact-based education, and addressing vaccine hesitancy. The interview concludes with Lydia expressing her newfound motivation to pursue nursing school to help educate new parents about vaccines.

Both audio and written transcript are available.

Lydia’s story would be relevant to health-related courses or discussions related to vaccination, healthcare decision-making, and the impact of misinformation.

British rock star Eric Clapton’s 2021 song “This Has Gotta Stop” expresses his apparent discontent with COVID-19 pandemic restrictions and vaccines. Known as the “anti-vax anthem” the lyrics detail his reported adverse reactions to the AstraZeneca vaccine. Clapton, who has been critical of vaccines and lockdowns since 2020, published a note in May outlining his negative experiences after the first dose. He expressed reservations about performing for a "discriminated audience" and reserved the right to cancel shows unless all people were allowed to attend. The song's music video features animated graphics of protesters and supports the British anti-lockdown group Jam for Freedom. This song could be used to spark conversation about anti-vaccine sentiments and the role of media and music in expressing opinions on social and political issues.

The citation is to a news story about the music video; the URL is to the video posted on YouTube.

“Dying to be Competent” details Cottam's experience with healthcare discrepancies in her experience giving birth attributed to the fact that she’s a woman of color.  Cottom describes having her physical pain be completely dismissed by healthcare professionals and claims that this resulted in the  tragic consequence of her daughter dying shortly after birth. Through her personal story, Cottom illustrates the inequalities within healthcare due to structural racism, and the grave lack of care women of color too often receive. This essay could be used in classes to further investigate the structural forces within our society and how they are subsequently intertwined with healthcare as well as how it creates marginalization and lack of care within the healthcare system. Additionally it could be used to discuss the role of unconscious biases and stereotypes within the medical field.  

Sexual and Reproductive Health Matters (SRHM) is an organization compiled of researchers, activists, writers, as well as other experts devoted to negating ideologies and other harmful policies, philosophies, laws, etc. against sexual and reproductive health. They are dedicated to procreating programs and policies that are focused on social justice as well as human rights, including through their journal. One of the journals, “Poetry for Sexual and Reproductive Justice,'' is a collection of 57 poems, some in Spanish,  all written by individuals outside of the organization and relating to sexual and reproductive health. Some examples of the topics addressed in poetry are stigma around menstruation, sexual violence, contraceptives, and misogyny to name a few.  This anthology could be used as a resource in a syllabus focused on women’s, reproductive, or sexual health. It could additionally be an aid within a creative writing class.

The article compiles brief quotations from interviews with parents sharing their experiences and lessons learned while dealing with their children's cancer diagnoses. The parents express the shock and emotional turmoil upon receiving the news, describing the physical and emotional impact of such moments. The struggles include grappling with the unfairness of the situation, the abrupt disruption of daily life, and the challenge of balancing personal well-being with the demands of caregiving.Some parents reflect on how they coped with the stress, sharing coping mechanisms such as engaging in activities with their children, seeking support from friends and medical professionals, and finding moments of joy amidst the pain. The article emphasizes the importance of self-care and highlights the physical toll that prolonged stress takes on caregivers. Although the quotations are very brief, and we don’t know much about the individuals who contributed them, they are interesting to consider as micro-stories or story fragments; taken together, the collection provides varying perspectives and voices of parent experience.

 

The "Being Heard" project explores how artists can help young adults with serious medical conditions feel understood and cared for.  Young adults worked with a team that included a nurse researcher from The Institute for Integrative Health, an art therapist/social worker, and two professional artists.  Each child wrote an "I Am From" poem and then participated in an interview with an artist, who created a painting and accompanying narrative based on what they heard. The nurse researcher and art therapist then shared the painting with the child, asked for their thoughts and feelings, and offered an opportunity for the child to create a watercolor print.

The exhibition at the Children's National Medical Center included eight paintings by patients between the ages of 10 and 19; the booklet from the show also includes the art work, poems and children’s responses.

The Washington Post ran a story on this project, available at this link.

Sandra Coral is a student, teacher, writer, podcaster, and learner all about neurodivergence. They have multiple social media sites (instagram, twitter, Facebook) that are publically accessible and focus on promoting  education and awareness about neurodivergence. She is autistic and has ADHD and shares her own experiences via through written posts, videos, and podcasts on topics such as sensory processing, fitting in, masking, and burnout. Sandras’s sites could be utilized in a classroom setting as narratives from someone who is neurodivergent told in their own voice. The link below is to the Facebook page, where the About profile provides links to other platforms.   Her social media posts are useful not only for discussing neurodivergent narratives, but also for reflecting on what constitutes a narrative (small individual posts retelling everyday life? the accumulation of posts over time?).  In contrast, her Substack includes longer posts that more clearly resemble stories.

The Poets.Org website of the Academy of American Poets has curated this collection of 14 poems related to mental health that were selected for teen readers (part of a series of "Poetry for Teens" on various topics).  Some themes throughout the poetry are depression, anxiety, as well as hope and resilience. Each poem includes a description of some of the themes within it as well as details about the author. The pieces span a range of time periods and a variety of authors with different backgrounds including, for example, Emily Dickinson and Sylvia Plath, as well as Naomi Shihab Nye and Ada Limón. 

In this short video posted by the Medical College of Wisconsin, Epiphany Gold, shares her experience with depression. As the pandemic started, Epiphany struggled with her mental health due to the isolation, losing her mom, and failing her nursing exams, something that had been an anchor for her. Epiphany shares how she no longer felt like she could continue to go on, not even for her child which was the sign that she needed to go therapy. She reflects how she feels therapy saved her as well as her life. This video engages with the topic of what it means to be in relation to others, specifically your child, while struggling with mental health. This video could be used to explore ways in which systems, or the lack thereof, of social support aid in the general well being of people, especially in regard to mental health.

The film States of Grace intimately captures the profound transformation of a revered physician and her family in the wake of a life-changing accident. Dr. Grace Dammann, a pioneering AIDS specialist and devout Buddhist who was honored by the Dalai Lama, was driving across the Golden Gate Bridge on her routine commute when another driver crashed head on into her car. After seven weeks in a coma and a dozen surgeries, Grace miraculously awoke with her cognitive abilities intact, though her body was left shattered. States of Grace follows her return home to where her partner Nancy “Fu” Schroeder becomes Grace’s primary caregiver, while also caring for their teenage daughter Sabrina, who was born with cerebral palsy. Grace, meanwhile, must reconcile her joy at still being alive with the frustration of being so dependent on others. Through verité footage and interviews with doctors, family, and friends, the film paints an inspiring portrait of devotion and trust as it delicately documents one woman’s fight to reinvent herself.

Through Grace and Fu’s story, this film explores many aspects of health studies, including the shift from provider to patient, role redefinition when a family member becomes a primary caregiver, the role that spirituality can play in healing, parenthood, and more.

This graphic memoir captures the author's journey with her mother, Alice, who is diagnosed with dementia. Through a creative blend of writing, visual art, and comics, Walrath weaves elements from Lewis Carroll’s Alice’s Adventures in Wonderland throughout the text to explore the transformative power of storytelling in navigating the challenges of mental illness, loss, and social stigma. The memoir offers a unique perspective on aging and caregiving, emphasizing the healing potential of graphic narratives by speaking to how visual mediums can communicate more than, or differently from, written text. Collaged illustrations, made in part from Carroll’s text itself, are accompanied by a textual vignette. The combination of text and art results in a cohesive narrative that would lack the same depth and detail if considered in isolation. Graphic medicine, Walrath writes, “lets us better understand those who are hurting, feel their stories, and redraw and renegotiate those social boundaries.” Aliceheimer's provides a way to introduce and educate people about Alzheimer’s as a medical condition, while highlighting the humanity involved in dealing with it as a family.

This novel could be used in classes regarding narrative medicine, graphic medicine, and/or caregiving experiences. It invites discussions on the role of storytelling in reshaping medical narratives, the impact of stigma on health, and the potential for creative expression in coping with complex health challenges. With Walrath’s background in Medical Anthropology, this book could also be used to ask how researchers personally connect to their work.