Type of Submission: Health Story

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.

Cami’s Polio Story

Cami’s story is one of several on this section of a site hosted by Children’s Hospital of Philadelphia, which includes several stories of individuals who had polio. Cami contracted polio as a child in 1954; this short personal story emphasizes the long-term physical and emotional struggles involved in overcoming the disease. Cami expresses concern about the current resistance to vaccines, particularly for diseases like COVID-19, and criticizes the choice to reject proven vaccines as foolish, selfish, and potentially deadly. Cami highlights the lasting impact of vaccine-preventable diseases and questions the wisdom of risking children’s lives by refusing vaccination, drawing on her own experience when no vaccine was available for polio.

Cami’s story could be used to discuss the ethical and historical considerations of vaccination. It could also illustrate the use of story for public health persuasion.

Former Anti-Vaccine Mom Explains How Movement Pulled Her In, And How She Left

This NPR interview discusses Lydia’s journey from being initially pro-vaccine to joining the anti-vaccination movement after a traumatic experience with her first child’s vaccinations. She describes how online forums fueled her fears, leading her to reject vaccines for her subsequent children. However, Lydia’s perspective shifted during the COVID-19 pandemic, prompting her to research and ultimately decide to vaccinate her children. The story highlights the role of misinformation in the anti-vaccine movement, the challenges faced by healthcare professionals combating disinformation, and the impact of social media. Lydia’s experience also emphasizes the need for open dialogue, fact-based education, and addressing vaccine hesitancy. The interview concludes with Lydia expressing her newfound motivation to pursue nursing school to help educate new parents about vaccines.

Both audio and written transcript are available.

Lydia’s story would be relevant to health-related courses or discussions related to vaccination, healthcare decision-making, and the impact of misinformation.

Eric Clapton’s “This Has Gotta Stop”

British rock star Eric Clapton’s 2021 song “This Has Gotta Stop” expresses his apparent discontent with COVID-19 pandemic restrictions and vaccines. Known as the “anti-vax anthem” the lyrics detail his reported adverse reactions to the AstraZeneca vaccine. Clapton, who has been critical of vaccines and lockdowns since 2020, published a note in May outlining his negative experiences after the first dose. He expressed reservations about performing for a “discriminated audience” and reserved the right to cancel shows unless all people were allowed to attend. The song’s music video features animated graphics of protesters and supports the British anti-lockdown group Jam for Freedom. This song could be used to spark conversation about anti-vaccine sentiments and the role of media and music in expressing opinions on social and political issues.

The citation is to a news story about the music video; the URL is to the video posted on YouTube.

Dying to be Competent

“Dying to be Competent” details Cottam’s experience with healthcare discrepancies in her experience giving birth attributed to the fact that she’s a woman of color. Cottom describes having her physical pain be completely dismissed by healthcare professionals and claims that this resulted in the tragic consequence of her daughter dying shortly after birth. Through her personal story, Cottom illustrates the inequalities within healthcare due to structural racism, and the grave lack of care women of color too often receive. This essay could be used in classes to further investigate the structural forces within our society and how they are subsequently intertwined with healthcare as well as how it creates marginalization and lack of care within the healthcare system. Additionally it could be used to discuss the role of unconscious biases and stereotypes within the medical field.

Poetry for Sexual and Reproductive Justice

Sexual and Reproductive Health Matters (SRHM) is an organization compiled of researchers, activists, writers, as well as other experts devoted to negating ideologies and other harmful policies, philosophies, laws, etc. against sexual and reproductive health. They are dedicated to procreating programs and policies that are focused on social justice as well as human rights, including through their journal. One of the journals, “Poetry for Sexual and Reproductive Justice,” is a collection of 57 poems, some in Spanish, all written by individuals outside of the organization and relating to sexual and reproductive health. Some examples of the topics addressed in poetry are stigma around menstruation, sexual violence, contraceptives, and misogyny to name a few. This anthology could be used as a resource in a syllabus focused on women’s, reproductive, or sexual health. It could additionally be an aid within a creative writing class.

Eight Lives – United Nations Population Fund

From the website: “UNFPA is the United Nations sexual and reproductive health agency. Our mission is to deliver a world where every pregnancy is wanted, every childbirth is safe and every young person’s potential is fulfilled. This publication, Eight Lives: Stories of Reproductive Health, relates the tales of eight women who have endured the challenges of poor reproductive health.” The anthology includes stories about breaking the cycle of female genital mutilation, family planning, HIV prevention, sexual violence, becoming a teen mother, maternal health, midwifery, and obstetric fistulas. “Each story gives a voice and a face to those most affected by the failures of a dysfunctional health system — and by gender inequality, violation of their human rights, blatant disregard for their social and cultural circumstances, and abject poverty.” This source could be utilized in a class focused on global perspectives on reproductive and sexual health. Discussion could be focused on marginalized communities within the healthcare system as well as differences between healthcare systems across countries.

“A Deep and Hollowing Pain”: Parents Share Stories of Caring for a Sick Child

The article compiles brief quotations from interviews with parents sharing their experiences and lessons learned while dealing with their children’s cancer diagnoses. The parents express the shock and emotional turmoil upon receiving the news, describing the physical and emotional impact of such moments. The struggles include grappling with the unfairness of the situation, the abrupt disruption of daily life, and the challenge of balancing personal well-being with the demands of caregiving.Some parents reflect on how they coped with the stress, sharing coping mechanisms such as engaging in activities with their children, seeking support from friends and medical professionals, and finding moments of joy amidst the pain. The article emphasizes the importance of self-care and highlights the physical toll that prolonged stress takes on caregivers. Although the quotations are very brief, and we don’t know much about the individuals who contributed them, they are interesting to consider as micro-stories or story fragments; taken together, the collection provides varying perspectives and voices of parent experience.

Being Heard: Empathetic Artistic Interpretations of Young People Living with Serious Medical Conditions

The “Being Heard” project explores how artists can help young adults with serious medical conditions feel understood and cared for. Young adults worked with a team that included a nurse researcher from The Institute for Integrative Health, an art therapist/social worker, and two professional artists. Each child wrote an “I Am From” poem and then participated in an interview with an artist, who created a painting and accompanying narrative based on what they heard. The nurse researcher and art therapist then shared the painting with the child, asked for their thoughts and feelings, and offered an opportunity for the child to create a watercolor print.

The exhibition at the Children’s National Medical Center included eight paintings by patients between the ages of 10 and 19; the booklet from the show also includes the art work, poems and children’s responses.

The Washington Post ran a story on this project, available at this link.

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.