Health Story Type: Newspaper or Magazine

Film can help us look disability in the eye.

This editorial (2 pages plus 4 links to videos) argues that US Americans are uncomfortable with disabilities and that filmmaking can make it easier for them to do so. The author tells his story of being misunderstood and having awkward interactions many times because of his condition (medical name not given) that he calls “whale eyes:” misalignment of his eyes so people can’t tell where he’s looking. He started by making a film his senior year in college to show his family how the world looks to him and how he works around his condition to read, write, cook, and navigate the world. From there he started making more films with disabled people – one with face blindness, another going blind, a stutterer – so they could tell their stories in similar ways. Videos linked to the article are 8-12 minutes long and all focus on “experiencing” the disability: See what the face-blind person experiences (recognizable faces are shown upside down and sure enough, you can’t identify them). Listen to the stutterer actively filtering out their fluency issues with an imaginary machine called a “Listenometer.” Useful as insight into non-medically focused stories of disabilities, or as examples for a digital storytelling activity.

The internet still thinks I’m pregnant.

This is both a podcast and a print version. Author downloads an app as soon as she finds out she’s pregnant, enters personal information (due date, last menstrual period), and enjoys the pictures and info that come along every week. Then she miscarries and deletes the app, but personal information has been sold to various other companies so she receives marketing as though she’s still pregnant and even a box of formula samples just before her due date. She finds a way to laugh at this and take early miscarriage in stride, but muses on the irony of her pregnancy being such public property when she had told almost no one before she lost it.

Useful for reflecting on the various audiences and media for our health narratives: the story we tell close friends and family interpersonally, but also the “story” that is revealed by apps and purchases.

Although the author ends on a humorous note, the essay does also include details of pregnancy disclosure and health care for miscarriage.

When the Uber Driver Asks, Do You Have Any Kids?

Prompted by the Uber driver’s small talk, this disabled author reflects on how an alternative self, who is not disabled, might answer–or would not have to answer, because her life would be different. Telling the story of the alternative self and life is a means of revealing some of the ways her Stargardt disease (a rare genetic eye condition) has affected the author. The story speaks to non-apparent disabilities, cultural assumptions (about women, about able-bodied-ness), stigma, and disability.

Heart Sounds

In this 5 minute read, a first year medical student discusses treating a patient whose family had to overcome indifference in the ER in order for him to receive treatment. Additionally, the medical student illustrates managing the unknown when assisting a patient with an advanced and nuanced condition. The student decides that the best treatment they can provide is listening to the family’s complaints, fears, and happy moments in order to encourage them to keep believing in this patient’s future.

The story touches on cardiology as a specialty and would benefit pre-medical undergraduates as well as professional students recently starting their health profession. It highlights the importance, and difficulty, of active listening.

¡Por favor, déjame lavar y aspirar más!

Sam narrates the impact of his pseudoxanthoma elasticum (PXE) through his chores around the house. After a discussion with his wife, Anna, about how to fairly split up these duties while his vision progressively worsens, Sam takes up cooking. Chores used to be tedious, but now he admits he finds peace in being able to perform actions like vacuuming and making the bed. Most importantly, he discovers that he and Anna share these out of the love they have for each other. Pseudoxanthoma elasticum is a hereditary disease that calcifies elastic fibers, mainly connective tissue. A case study about this disease could be supplemented with this article in medical school. Focus on relational issues would appeal to an undergraduate class. 20 minute read for advanced Spanish learners.

Un último acto de amabilidad íntima

Michelle Friedman describes providing home care for her estranged younger brother as he dies from advanced pancreatic cancer. She touches on difficult topics of conversation, her brother’s depression, and grappling with death and religion.

An English language translation of this essay is available under the title, “A last act of intimate kindness.”

Did a famous doctor’s Covid shot make his cancer worse?

Beyond – and more important than – the medical details, this article raises questions about the power of individual stories, in this instance case studies, of what might be fluke happenings or might be patterns of rare but significant side effects of a vaccine. Deep reflection on what happened when the teller was not just a patient but a scientist, one of several authors on a peer-reviewed article reporting findings in a journal, and how his trajectory would have been lost in a randomized clinical trial but might be quite significant if put together with two or three others with similar progressions. Also significant that his radiologist and co-author was his brother; not everyone has such a keen listener to their health narrative, nor would most people be able to tell them in such detailed and credible ways.

Useful for discussions of scientific knowing vs storytelling in e.g. a rhetoric or composition class; science writing (author reflects at the end on her hesitation about writing the story at all, given potential misuses and misstatements of the facts she presents); power of stories; doctors as patients.

Promises Like Dolls

“Promises Like Dolls” is a very short story (123 words) about the experience of multiple miscarriages. The story refers to various objects (dolls, books, flowers, t-shirts, stuffed animals) as a way of reflecting on expectations of motherhood (her own and those of others and of society) and on the grief of miscarriage. It also represents the limits of social support for miscarriage.

The story is short enough to be read together in class, both as a reflection on how the experience of medical events is shaped by cultural norms and social experiences and as a prompt for discussing how the author utilizes specific imagery and description to convey (and imply) complex emotions in a very short work.

My body is a cage of my own making

An accessible, 7-8 page excerpt from her book, Hunger: A Memoir Of (My) Body. Roxane Gay writes about her struggle with her weight and body image. When people commented on her body, refused to sit next to her on planes, or took food out of her grocery cart, Gay struggled to accept, and even love, her body. When she broke her ankle and needed emergency surgery she began to take a healthier approach to living in a larger sized body. Useful for classes and community groups to talk about fat-shaming.

My Life is More ‘Disposable’ During This Pandemic

Written near the beginning of the COVID pandemic, the essay discusses how triaging care and minimizing the severity of COVID (e.g., saying, “only” chronically ill people and the elderly are likely to become severely ill or die) reflects the lack of value placed on the lives of the old and disabled. The author, Rabbi Elliott Kukla, is immune compromised and a child of parents who survived the Holocast. He reflects on how people’s unwillingness to give up travel or eating out to help stop the spread reflects a lack of care for those who are vulnerable.

Although written early in the pandemic, the essay picks up on themes raised by disability and other activists, questioning the “return to normal” following COVID. Could be used to prompt discussion of the difference in scale between public health arguments and statistical analysis and the value of individual life and perspective this narrative advocates for acknowledging.