Health Story Type: Blog Post

Access Intimacy, Interdependence and Disability Justice

Text of Mia Mingus presenting at the 2017 Paul K. Longmore Lecture on Disability Studies at San Francisco State University, with a link to the video, posted to YouTube. Mingus is a queer physically disabled Korean transracial and transnational adoptee, who is a writer and educator of disability justice. The lecture focuses on disability scholarship with personal stories woven throughout used as persuasive appeal. She stresses that disabled people, including disabled queer individuals of color, are often overlooked in social justice movements and communities, and emphasizes the importance of including their experiences and stories. The main focus of this talk is the idea of “access intimacy,” which is a term she coined that refers to a deep, often unspoken connection between individuals who understand and accommodate each other's access needs, in the context of disability. It's the feeling of comfort and understanding when someone "gets" your access needs, making it easier for disabled people to navigate their daily lives. Access intimacy can exist with other disabled people, family members, or complete strangers, and can be as small as a knowing look and intangible as a feeling of familiarity. Nevertheless, Mingus describes how access intimacy is a powerful tool for liberation and a way to reframe the understanding of disability. Mingus argues that access should be used to challenge ableism and able-bodied supremacy and encourages shifting the responsibility for access from individual to collective responsibility. This talk could be used to bring up discussions about disability and ableism, disability justice, interdependence, cultural competence and intersectionality, and patient-centered care.

Children’s art as visual narrative

This article about visual narrative highlights the effectiveness of non-verbal expressive arts like drawing, painting, and constructing as therapeutic and restorative experiences. Trauma survivors, including children, may find it challenging to articulate their experiences verbally, as trauma can impact the brain's language centers. The article contrasts previous approaches that encouraged forgetting traumatic events with the current understanding of the importance of acknowledging, validating, and providing mental health intervention for survivors, allowing them to tell their stories through creative acts. The article references the project "Forced to Flee: Visual Stories of Refugee Youth from Burma," which compiles a book of art expressions by young refugees (a page for the kickstarter campaign for the project was available as of 12/20/23 at this link). The project showcases how visual narratives, conveyed through art, can tell powerful stories, open hearts, and build bridges of understanding. By honoring the visual narratives of youth, the project not only raises awareness about human rights issues but also offers a glimpse into possibilities for reparation and redemption for young survivors.

Why I Became a Speech-Language Pathologist: My SLP Story

Lisette Edgar, a professional speech language pathologist (SLP), recounts her journey discovering the field through her son’s speech challenges and ultimately deciding to pursue a career as an SLP. She details her son’s pronunciation difficulties that were first noticed when he was three, and how, in getting him assistance, she was catapulted into the unfamiliar world of speech therapy. Due to a shortage of speech therapists at her son’s school, Edgar ended up doing a lot of lessons and practice at home. When she began working as a substitute teacher at her son’s school, she got even more exposure to the work speech therapists do, and she decided to go to graduate school to become an SLP. On Edgar’s blog, there are many resources and lessons that focus on subjects from autism to apraxia to stuttering. This post would be useful in a pre-professional medical class to inform students about the different pathways they can take with their medical careers aside from being physicians. It would also fit very well into a graduate SLP class as an introduction to how various people get involved with the field, and how signs of speech difficulties show up—and can often be overlooked—in young children. One assignment that could be created off of this is to have students browse the resources and then create an exercise of their own that could be used to help children with a speech condition.

Josh’s Own Story – Living with HIV

This health narrative comes from a personal Blog entitled I’m Still Josh. Josh Recounts his journey from testing negative for HIV in November 2011 to being diagnosed with HIV-1 in January 2012. Despite the initial shock and fear, he remained resilient and committed to raising awareness about HIV, challenging laws in Tennessee and stereotypes associated with HIV. Josh highlights that HIV is not a punishment and that individuals living with HIV are not "dirty." The author discusses the importance of informing sexual partners due to legal obligations but expresses a positive attitude, asserting their undetectable status and the ability to maintain a fulfilling life, including engaging in sexual relationships.

In a health narratives class, this story could be utilized to explore the emotional and social aspects of living with HIV. It provides insight into the personal challenges, societal stigmas, and legal implications associated with HIV. The narrative encourages discussions on the intersection of health, law, and personal identity, as well as the importance of destigmatizing HIV and promoting awareness. Josh’s narrative could serve as a platform for discussions on public health policies, the impact of legal frameworks on individuals with HIV, and the role of storytelling in health advocacy.

Heather McQueen: Dignity in Dying

Heather McQueen, deeply affected by her mother Sheena's inhumane death from terminal cancer, has committed herself to advocating for legal changes surrounding end-of-life choices. Sheena endured a rare form of anal cancer and faced the intense physical toll of radiotherapy, leaving her with third-degree burns. As her health deteriorated, doctors discovered a stomach-blocking tumor, eliminating treatment options. She spent her final week in the hospital, unable to return home due to the discomfort of the ambulance trip. Heather believes that at that point, her mother should have had the right to choose to die. Heather reflects on her mother's life and expresses her resentment to the legislation that denied her mother the right to a dignified death.

This narrative can assist a class in unpacking the impact of legislative choices on individuals and families. Discussions can include the role of advocacy in shaping public opinion and influencing legislative changes. This narrative provides an opportunity for students to examine the complexities of patient autonomy, compassion in healthcare, and the potential consequences of restrictive end-of-life care options.

Meet Marleah: Testing positive for the BRCA2 gene at 25

Marleah’s health narrative comes from the CDC.gov website. She discovered she had the BRCA2 gene mutation at age 25. Marleah discusses her navigating the challenges of motherhood while considering surgery after completing her family. She chose to manage her breast cancer risk through frequent screenings and lifestyle choices rather than opting for preventive surgery. Inspired by her mother's own battle with breast cancer and her own gene mutation discovery, she became a university professor specializing in hereditary cancer research. Her work focuses on understanding the emotional impact of genetic uncertainty and developing strategies to help individuals cope. The narrative highlights the complexity of decision-making in genetic disease management and underscores the importance of personalized approaches.

This narrative could be used to explore the intricate decisions patients face when managing a genetic disease, specifically a BRCA2 gene mutation. Marleah’s story highlights the complexity of decision-making in genetic disease management and underscores the importance of personalized approaches. As a mother, Marleah faced certain ethical dilemmas when it came to decisions about her own health. This story could also be useful for those who are forced to make similar decisions.

Jessica’s story: “It isn’t just dementia that’s a terminal diagnosis – life is”

Jessica delves into her experience grappling with the possibility of inheriting familial Alzheimer's disease, a rare, inherited form of the condition. Jessica shares her decision-making process, including participation in observational research, contemplating genetic testing, and the emotional impact of receiving the test results. The story not only highlights the unique challenges faced by individuals with a genetic predisposition to dementia but also sheds light on the complex ethical and emotional considerations surrounding genetic testing. Jessica learns she does not carry the gene, leading to a mix of relief and survivor's guilt. The narrative concludes with an insightful reflection on the importance of embracing life regardless of a terminal diagnosis and offers support to those facing similar decisions.

Students can analyze the emotional, ethical, and practical dimensions of genetic testing, exploring the author's motivations, challenges, and the aftermath of receiving the results. The story prompts discussions on the broader implications of genetic testing, including family dynamics, reproductive choices, and coping with survivor's guilt.

Mackenzie: My Faulty Gene

This narrative tells the story of Mackenzie, who, from a young age, was actively involved in raising awareness and support for Huntington's Disease (HD) due to its prevalence in their family. Mackenzie's mother, grandfather, and aunt had all been affected by HD, prompting a personal decision to undergo predictive genetic testing at the age of 18. Contrary to expectations, Mackenzie tests negative for the HD gene, leading to a profound shift in life plans and a reevaluation of personal goals. The narrative explores the complex emotional aftermath, including feelings of being lost and survivor's guilt. Despite the challenges, Mackenzie discovers a renewed purpose in advocating for the HD community and gratitude in the knowledge gained through genetic testing.

Students can analyze the challenges and opportunities presented by genetic testing, exploring the impact of results on personal identity, life goals, and community engagement. The narrative also raises important ethical considerations surrounding predictive testing and the potential psychological effects on patients.

I Have Congenital Heart Disease So I Created These Comics To Show What My Life Is Like

This is a series of short comics depicting what it is like to live with congenital heart disease (CHD). There are eight multipanel topics: “Mornings,” “Transmissions,” “To do list,” “Kind of works,” “Behavior,” “Stairs,” “Too Young,” and “More than enough.” They all portray this person’s heart as an anthropomorphized character sabotaging their health in frustrating and unpredictable ways, like that of a misbehaving child. Each comic has a caption underneath giving more context than the minimal dialogue provides. The series is honest, comedic, and ultimately inspiring. The author explains how they seek to demystify CHD and debunk stigmas around young people having heart disease or getting pacemakers as well as not “looking sick.” This would fit in well into a class on graphic narratives to teach about the advocacy through illustration and how to write effective dialogue, a premed class teaching about heart disease to provide a patient perspective on the social difficulties of living with it, or a class discussing rhetoric of illness stereotyping to better understand why and how some diseases become more stigmatized than others.

Testimonio personal sobre el Trastorno de Ansiedad Generalizada

An anonymous source discusses her experience as a young woman with anxiety. As a child, she began to have recurring thoughts of situations that had never occurred, e.g. fears of being late for class made her unable to sleep. Doctors assumed her only problem was insomnia, without probing for anxiety. Appropriate for upper intermediate classes or community groups to discuss taboo of admitting mental illness, describes various forms of anxiety and offers suggestions for alleviating symptoms.