Tag: open access

Crip Camp

“Crip Camp” is a Netflix documentary produced by Barack and Michelle Obama that traces the origins of the US Disability rights movement to a summer camp for disabled youth called Camp Jened. The film showcases the strong bonds formed at this unique camp that provided a place for self-discovery, authenticity, mutual support, and connection for disabled teens living in a predominantly able-bodied world. The film then follows a group of camp alumni who went on to become advocates for disability rights, putting political pressure on both state and federal authorities. Their tireless efforts eventually led to the passage of the historic Americans with Disabilities Act in 1990. Camper and staff member’s personal narratives are woven throughout the film, personalizing disability in a way that calls viewers to question stereotypes about disabled people, thus functioning as a tool for education and advocacy in and of itself. These stories, often heartfelt and humorous, touch on everything from personal relationships, sex lives, employment, and hierarchy within the disabled community itself. The documentary runs for 1 hour and 42 minutes and combines footage from the camp’s heyday in the 70s with present-day interviews with the attendees.

This film could be relevant to classes on healthcare, disability studies, public health, or social justice to facilitate discussion about physical disabilities, advocacy and activism, healthcare policy, or intersectionality. The film could raise questions about the role personal narratives play in shaping public perceptions of disability and health, who counts as “all” when we think about “access for all,” and what patient-centered care can actually look like, as exemplified by the individuals at Camp Jened.

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.

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.

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.

Neurodiversity Poems

This anthology houses a multitude of poems related to neurodivergence. The authors all have different backgrounds as this is an open site where anyone can publish their work. The site is searchable and poems are tagged. Some examples include a poem about masking, the perception of “normal,” and “praying for a neurotypical brain.” One poem details an individual’s experience with growing up and feeling like they constantly are on the outside looking in and having to hide aspects of themselves to fit in. This site could be utilized as a resource for creative writing in terms of neurodivergence. As poems from personal, first hand experiences of neurodivergence, they provide insight as to the nuances to individual experiences that caution us against generalizations and stereotypes.

Autism and Neurodiversity: Different Does Not Mean Broken.

In this TedTalk, Adriana White (librarian, former special education teacher, and author) discusses the idea of neurodiversity. She was diagnosed with autism and anxiety in her 30’s and now advocates for inclusive schools and libraries. Her talk includes stories of her own autistic experiences, including how others labeled and made fun of because of the way her brain works. This video could be utilized as a tool to investigate how medical diagnoses elicit certain stereotypes and biases, such as being denoted as a “weird” kid. Additionally it could be used as a way to create dialogue surrounding the cultural and societal norms that surround the ideas of being “normal” as well as raising questions about accommodations in the built environment and the social model of disability.