Tag: stigma

Viaje Alrededor De Mi Cabeza. Una Historia De Mi Calvicie

Alejandro Badillo talks about his baldness and how being bald is not only a medical condition but also a cultural condition. When he was 17 years old, Alejandro’s hair began to disappear. The technical term for his condition is androgenic alopecia. Among the descriptions of how to be bald, Alejandro includes a lot of historical, philosophical, and cultural information on baldness. His personal story has deep connections to the experiences of other bald people.

“She Didn’t Think Fat Women Deserved to Have Children”: Memorable Messages From Healthcare Providers in the Context of Fat Pregnancy

Infertility is physically, emotionally, psychologically, financially, and socially challenging. For people in larger bodies, infertility challenges are intensified as providers often blame them for their inability to conceive or carry a pregnancy to term. Authors used a strategy common in communication research for 30+ years to elicit “memorable messages,” all of which have to have a story behind them. Primary themes in these messages were (a) body size is a primary reason for infertility, (b) weight loss will lead to a successful pregnancy, and (c) denial of care. The method might be used or modified as a way to elicit health narratives. Particularly useful for a research methods course or to document fat-shaming from participants’ perspective.

Historias verdaderas de personas con el síndrome de Tourette

Mike Higgens is a dad, husband, and pastor. He tells a short story of the day he was diagnosed with Tourette’s syndrome. Although he began to show symptoms at age 12, he was not diagnosed until he was 28. The article could prompt discussion about the importance for physicians to listen to patient stories as well as the signifcance of social support.

Mi vida con Sida: La historia de Carolina

Details a young Chilean woman’s experience with AIDS. Her first symptoms were a severe pneumonia and first diagnosis was depression; finally tested positive for AIDS. Details both the stigma of having AIDS and the often supportive reactions from family members. Chilean dialect features may make this otherwise brief, accessible story a stretch for non-native speakers before upper intermediate level. Good example to discuss stigmatized health conditions, misdiagnosis, dealing with family members’ reactions.

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.

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.

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.

To understand autism, don’t look away

Carina Morillo shares her story as the mother of a son with autism through a TedTalk. The video is in Spanish with English subtitles; a transcript in English and Spanish is available as well. Morillo’s 15 year old son, Ivan, was diagnosed when he was two and a half and at that time, his parents did not have access to internet information or expert advice about autism. Morillo describes how she learned to connect with her son through activities he enjoyed and how she learned to appreciate and build upon his strengths, such as a strong visual memory, which became a basis for his communication through images. She describes support from a local grocer who gave her son a job that utilizes his passion for organizing items. Her message is that one does not need to be an expert to be curious and inclusive.

Eye contact is a part of the story and a metaphor for inclusion; some autistics might point out that insisting on eye contact can be distracting, even painful. However, the larger point of the story emphasizes valuing autistic abilities and working with their interests to create connection. This story can prompt a discussion that may challenge stereotypes about autism and expert systems of medicalization and treatment.

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.

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.