Tag: disability

ShayShitsinaBag TikTok Channel

Shay Haberstroh, via TikTok, shares their story with Crohn’s disease and an ostomy bag. She talks about doing daily tasks, her love life and marriage, personal relationships, and even makes fashion and cosplay videos for people who have an ostomy bag. Her story explores chronic illness and disability, mental health, as well as what it’s like to face the idea of death as a young person. One of her viral videos shows her, shocked, with a caption that says, “realizing i’ll shit into a bag forever.” She then brings in humor and relief with the caption, “my asshole will be permanently clean.” She explores an issue that people don’t often talk about, bringing comfort to the conversation of body-differences and life saving medical devices, like an ostomy bag. She makes chronic illness an accessible and humorous topic on a platform that lots of young people use, fighting shame.

This TikTok account could be used to explore the use of different platforms for storytelling and advocacy. It could be used to discuss normalizing bodily differences, and the importance of making stories accessible and potentially, humorous. As well, healthcare professionals could benefit from watching these videos, listening to Shay’s critiques of the healthcare system, and evaluating how they could change their practice to accommodate more people and their individual experiences.

She gives great examples of how people with invisible illnesses, as well as women, are often overlooked in the healthcare system. Many of her videos are skits that she creates, acting out scenarios where she was treated poorly in healthcare or not listened to by doctors, despite the fact that she has a serious illness.

Squirmy and Grubs YouTube Channel

“Squirmy and Grubs” are a married couple who make Youtube videos, podcasts, and Instagram posts about life as an interabled couple. Shane, who has spinal muscular atrophy, and Hannah, who does not, share their daily lives, challenges, and adventures. They provide insight into their interabled relationship, educating viewers about disability awareness, acceptance, and the importance of genuine connections. Their youtube channel spreads awareness about Spinal Muscular Atrophy, but also dives into what it’s like to be together as one person who has a physical disability, and one who does not. They share videos that share their daily routine and how Hannah cares for Shane. Though, they also emphasize the ways that Shane gives care to Hannah, as well, even though he has very limited mobility. This Youtube channel is important because it shows how an interabled relationship is not really so different, and that disabled people can be in genuine and fulfilling relationships.

This youtube channel gives a first person perspective of life as an interabled couple and could be used in a classroom setting for classes focused on learning about reciprocal care, and the logistics of taking care of someone with a physical disability in a way that shows humanness, support, reciprocity, and sensitivity. They provide many great videos on how certain people with disabilities would like to be addressed, cared for, and interacted with in public and private settings, sharing a unique perspective. Specific videos to watch for learning and analytical purposes are titled, “Intimacy in Our Marriage Q & A,” “We’re Hiring a Caregiver?!” and “Our Physical Intimacy and Romance Explained.” These videos provided a candid look into their life as an interabled couple, sparking discussion on the role of media representation of disability, and how humor plays into storytelling and health narratives.

The Almost Right Word: The Move From Medical to Health Humanities.

Concise summary of the history of medical humanities and how a distinct understanding of health humanities (using disability studies as an example, emphasizing how much of living with disabilities does not happen in medical contexts) contributes to analyzing and understanding human factors in health. Useful as background for undergraduate courses; expanding conversation for pre-health and health professional students.

Close reading a Twitter thread: Blind on the NHS

2 page (total) text presented here is a health narrative presented as a Twitter thread that raises issues that could be connected to several themes in courses related to health communication, reproductive justice, public health, narrative medicine, or more general writing courses to which the instructor wanted to add a health component. The outline includes detailed instructions for close reading the text, a central form of inquiry in narrative medicine. The goal of this instructional strategy is to can help participants attend closely to the narrative and find a point of personal connection to it. The format of the health narrative – a thread of about 20 tweets – lends itself to analyzing the role or impact of the medium on circulation of the message. Short enough to read aloud in a 45-50 minute class and work from there; could also be used in a workshop or storytelling group centered on prenatal care and/or disability.

Volver a escuchar ha sido un milagro para Gabriela

Gabriela has been working at the Ministry of the Nation in Buenos Aires in her private practice with patients with hearing loss for 20 years. She suffered from measles at the age of 2 and began to lose her hearing soon after. She goes into great detail describing the gradual loss of her abilities and independence, her career change to be a psychologist working with people with hearing loss, and her eventual decision to get a cochlear implant. She emphasizes her will and determination to overcome any goal that life puts before her. A story in question/answer form, about 2 pages, suitable for discussions of Deaf Culture or ways of coping with progressive disability.

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.

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.

El único intérprete

“El único intérprete” describes a Colombian, Jhon who became a sign language interpreter because he saw an opportunity to improve the legal system from within the prosecutor’s office. Could be relevant to (pre-) law students, legal Spanish classes, more general upper division courses, to show the struggles of those with disabilities in systems not designed with them in mind. In Spanish with both Spanish and English transcripts available. 44 minutes.

¡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.

240 Birds

Juan Pablo Culasso was born blind, but until the age of 5 or 6 this had little effect on him because his family encouraged him to explore and be as active as any other child. Once he started school, an educational system that was unprepared to incorporate him into learning environments built around sighted children created significant barriers to receiving any education at all. His family took over his education and he learned rapidly, including mastering the piano and guitar. One day Pablo informed his father that his guitar is out of tune, off by a hertz or two. This is how they learned he had perfect pitch. He began listening to birds and memorizing each call, eventually being able to identify 240 bird calls. He won a national competition for “The smartest person in Chile” and now works in an ornithology lab in Canada. This podcast can work for upper intermediate learners of Spanish, or higher. The speaker uses a dialect from Uruguay. It could spark discussion on what constitutes a “disability” and how rare talents – like perfect pitch – can be obscured behind that label. Spanish transcript and English translation of the transcript are available.