Health Story Hub
This story describes the pain of a mother who gave up a foster daughter, Coco. A year later, she adopted a baby boy, and described this grief to the social worker, noticing that having language to describe the specific loss – “duelo por falta de derechos,” – ‘grief because you have no rights (to keep the child)’ – helped the family move on. 10 minute read, upper intermediate level.
Sarah Wildman describes her grief after losing her 14 year old daughter to cancer. Her efforts to describe her feelings lead through several languages, offering possibilities for discussion of translation. Intermediate level, 2-3 pages.
The author found out at age 12 that her mother had a sister who was institutionalized before age 2 with intellectual disabilities that left her unable to speak. She traces her aunt’s life through various institutions, most of them deplorable, and hears her mother’s grief over the separation from her only sibling. She contrasts the attitudes and treatment of such disabilities in the 1950’s through the 1980’s with much more open acceptance and inclusion of nonverbal persons in the 2020’s, based on a photo that went viral on Twitter. Detailed memoir of three generations’ relationships with the sister: the author’s grandmother, her mother, and herself. Traces the evolution of attitudes toward intellectual disabilities in the 20th and 21st centuries from close relationship to the issue, noting that children born today with her aunt’s condition are able to live much fuller lives because of greater inclusion in educational, social and family contexts. Includes many links to relevant sources, from memoir to scientific works. About 15 pages; also has audio version.
Three page first person account of a woman’s drug addiction. It touches on cultural aspects: “I’m 28 years old, have never had a real job and I and live at home with my parents and five siblings, which might be part of why I’ve never had much freedom or agency.” She descends a long way and then is saved by faith in God. Although not compelling for undergraduates, this might do well in a community group setting because it humanizes the addict.
Pediatrician Vidya Bhavani Viswanathan describes learning to communicate with her autistic son by changing her own expectations about what constitutes “communication” and how we can connect with one another without words. Her essay details the course of her son’s loss of language at age 3, and her own struggle to come to terms with this. She writes, “I am a writer, and for me his loss of verbal language was so crushing because words were my primary currency of existing. The way I understood the world was through words, and the way I explained it was through words.” Gradually, however, she learns “how to achieve connection without words” and she gives an eloquent list of examples: “Shared enjoyment of something he was interested in; cuddles and tickles that lead to a fit of giggles; city walks with moments of pause to quietly smile his dazzling smile at the crunchy leaves on the ground, the touch of a rough brick wall, the screech of tires, and the wail of an ambulance.” The story also includes information about treatments, screenings, therapies, and assistive technology, yet the emphasis is not on “fixing” her son, but on ruling out possible medical causes for his loss of language and then learning to appreciate how he communicates and how she can enter and appreciate his world.
The essay could prompt a discussion about autism acceptance, and the importance of presuming that autistic children can connect and communicate when provided with accommodations and supports. It also encourages an appreciation of autistic perspectives and challenges deficit-based stereotypes.
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
The Cure Tay-Sachs Foundation website contains many resources including information about the disease, carrier statistics, family stories, research initiatives, and fundraising opportunities. Tay-Sachs disease is a rare, fatal genetic condition that destroys nerve cells in the brain and spinal cord primarily in babies and young children. It has a history of affecting people of Ashkenazi Jewish descent but now is seen in other ethnic backgrounds. If you click on the “family stories” tab, you can view over twenty personal narratives of children who were diagnosed with Tay-Sachs, often written by parents. The stories are divided into three short sections documenting the journeys from when they first realized something was wrong, how the illness progressed, and what the family’s ultimate decision was in how to handle it. One of the stories is told from the perspective of an adult with late onset Tay-Sachs as well as bipolar disorder, and she describes the experience of dealing with both conditions simultaneously. Another feature of this website to explore is the “drawings of our kids” tab. You can click on any of over fifty names to see an original drawing of children who have died from Tay-Sachs, all drawn by one of the grandfather of one of the children. The family stories would be a very impactful reading assignment in a course about genetic diseases to increase awareness about the many different ways the same disease can affect individuals and families. It could also fit into a bioethics course to prompt discussions or even essays on if/when it is ethical to stop providing treatment and medical intervention for a patient who has a terminal illness with serious impacts on quality of life for the patient and family.
“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.