Tag: open access

Family silence around disability complicates brothers’ bond

In this brief interview, Terrence Ho describes his relationship with his brother Torrance, who was diagnosed with Duchenne muscular dystrophy as a child and passed away at the age of 37. The interview addresses family relationships, cultural stigma, and Terrence’s roles as caregiver and advocate for this brother. Terrence also describes Torrance’s talents as an artist and power wheelchair hockey goalie. Terrence has advice for other siblings about how to manage family dynamics, emotional stress, and patient advocacy. The interview reveals what an important role siblings play over time when a child has a degenerative condition, and also speaks to the difficulty parents may have in talking to children about their brother’s or sister’s disabilities. There are several mentions of types of health care and services that were provided or that would have been useful.

This brief story provides insight into challenges and rewards of the sibling relationship, one that is often overlooked. It could be used to prompt discussions about family caregiving, family communication, and ways health care providers can support family caregivers.

Case Report

“Case Report” document’s the author’s simultaneous experiences of being a medical student and sexual assault survivor. It moves through the aftermath of the trauma living solidly in two worlds, as an insider and outsider of healthcare.

This brief story describes numerous interactions with a range of health care providers, as well as interactions that occur with friends, a pharmacist, patients, and others. By showing examples of unhelpful and helpful ways people responded to a sexual assault survivor, this story can prompt important discussions about compassionate care and social support. It also provides insight into how a provider’s own traumatic experiences inform their approach to medical care. Some of the interactions in the story are difficult to read so advance notice may be appropriate with some audiences.

Less? a film of personal stories from people who have experienced and overcome homelessness

This 12.5 minute video by Britain’s NHS interweaves stories of four people who experienced homelessness and are now housed. Included in their stories are accounts of ways they felt dehumanized and stigmatized in health care settings, as well as small acts of caring that encouraged them to seek help and experience self-worth. Several of the stories also speak about substance use disorders and provide context for understanding how they may be intertwined with homelessness. For example, Viv speaks about how terrifying it is to sleep outdoors and Jamesy’s story includes discussion of how his drug use and homelessness were precipitated by several traumatic events that happened in a short time period. One of the stories mentions an averted suicide attempt.

The video is brief enough to be used in a class, and could be paired with other materials that document the connections between homelessness, health care access, and risk of chronic and fatal health conditions (see, for example, Denise’s Last Days, published February 20, 2023 in Slate Magazine: https://slate.com/technology/2023/02/trauma-aware-care-homelessness-hope.html).

Body of Work

Anna Dovre’s story “Body of Work” is a meditation on the various ways she has encountered death through her medical education: learning to intubate on a cadaver, witnessing death in the emergency department, sitting with a hospice patient. Her essay reflects on the ways death is experienced and understood in the process of medical education and the connections and disconnections with one’s own understanding of mortality.

She starts her reflection with a description of her practice time in a cadaver lab and the physical benchmarks for competency when performing an autopsy. The following section about her time as a hospice companion juxtaposes personal experience with a discussion of clinical terms for ways and stages of dying. “To die actively means the pauses between breaths lengthen and stutter; the mind slips into unconsciousness; the skin begins to mottle into starbursts of purple and blue. To die inactively—well, that becomes a question of semantics, of philosophy.”

The story raises questions about how we honor life and make one’s last moments and after death a respectful and respected process. How can we, as the living, be more appreciative of the gift of life while caring for those around us? This quotation, “If anything, the scene on the table has become more gruesome, but perhaps that has rendered her less real, less human to me,” from after the autopsy is a stark realization that will inspire feelings and emotions in readers.

Wake Up

This song expresses the desire to discover that a diagnosis of cancer is not real, to “wake up” from the experience and emotions of approaching and fighting illness to discover it’s been a nightmare, rather than one’s new reality. The song is from the musical, Club Meds, which tells the stories of three people affected by cancer and by each other.

Songs can be powerful tools for teaching by providing emotional resonance, perspective, and connection to a topic that can otherwise feel isolating or clinical. Lyrical stories engage emotions in ways that data or factual information alone often cannot. In “Wake Up,” pace, rhythm, and repetition convey feelings of wanting to deny or resist a diagnosis yet being forced to come to terms with it.

Stories of illness told in song can also allow individuals to connect with themes of mortality and end-of-life on a personal level, creating empathy for the fear or stigma associated with these topics. This can be especially beneficial in communities where discussing mortality is a cultural taboo. Mortality-themed lyrical stories can normalize discussions around death and dying. In a community setting, they can facilitate support groups or workshops where people feel safe to discuss these topics openly. In clinics, they can make patients and families feel more comfortable asking questions or expressing concerns about end-of-life care options. For both patients and families, lyrical stories about mortality can provide solace and a way to process grief. They serve as a form of art therapy, encouraging reflection and emotional release, which can be healing during or after the grieving process.

Para vivir con salud: Leyendo la salud y la literatura.

This open-access resource describes itself this way:

“Para vivir offers an introduction to reading different literary and cultural texts from the Spanish-speaking world with a thematic focus on health. It can be used as an alternative to the standard Introduction to Hispanic Literature course texts, as it also teaches techniques of close reading. It incorporates authors from seventeen counties, has an almost even representation of male and female authors and diverse communities in the Hispanic world (European, Creole, Afro Hispanic, Latinx, Indigenous, Jewish). In addition to introductions to reading different genres (narrative, poetry, theater, and film) we have scaffolded supporting material such as biographies, notes on the historical contexts, pre and post-reading questions.”

Although framed in terms of its uses for literature courses, the literary selections here could be incorporated into many other intermediate and higher level Spanish courses in which reading and composition are central activities. Much primary source material is included in the book itself; when not available due to copyright, there are suggestions on how instructors might be able to access them on their own. Beyond the readings themselves, the book includes a great deal of pedagogical material (introduction to genres and reading strategies), a bibliography that introduces health humanities and links literature to the work of health professionals; ideas for syllabus construction. It is downloadable.

Learning Our Son’s Language

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.

Depression Quest

This is a choose-your-own adventure game that aims to illustrate what having depression is like, specifically for those who have not experienced or have not been diagnosed with depression. The creators stress on the opening page that the game is not representative of everyone’s experience with depression, but is an amalgamation of different or shared experiences from people with depression. Each “level” has a different description of what the character, you, do or can do throughout the day. You then have the opportunity to choose between a few options that lead to different results or storylines. Some of the options are portrayed as beneficial while others are harmful. Some levels, specifically when the character’s depression is particularly extreme, show answers that are red-lined and unavailable to us, although we can read them. There are many different endings that appear depending on what choices you make throughout the game, meaning that everyone in the class who plays could have a different outcome or experience, which can lead to an opportunity for discussion.

The creators end the game with this message : “Instead of a tidy ending, we want to just provide a series of outlooks to take moving forward. After all, that’s all we can really do with depression – just keep moving forward. And at the end of the day it’s our outlook, and support from people just like you, that makes all the difference in the world.”

This narrative experience could be used to discuss themes such as immersive and experiential learning, including controversial learning models such as disability simulations It can also be used to discuss what we value in narratives: does the ability to act as the character immerse us more? Do we feel distanced without an author to connect with? The game play could be supplemented with other reading materials to compare and contrast different uses of narrative. When the game was released, it was also caught up in the “gamer-gate controversy” (described in a New Yorker feature article: https://www.newyorker.com/tech/annals-of-technology/zoe-quinns-depression-quest). This larger context for the game could prompt discussion about stigma associated with depression, and the appropriateness of using a “game” to educate in this way.

Users have the option to “play for free” or “pay what you want.”

Embodied Futures: Reimagining Aging in Conversation with Older People

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

Family Stories of Tay-Sachs Disease

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.