Tag: disability

“Final del juego” por Julio Cortázar

The story revolves around a young narrator, her sisters Holanda and Leticia, their mother, and their aunt Ruth. Leticia suffers from an unidentified back ailment and often directs their play. Told from the point of view of a child learning to understand disability, with emotions ranging from pity to envy: Leticia is excused from chores and catches the eye of an appealing stranger. Could begin discussion of how people with disabilities are perceived and responded to by able-bodied peers and family members, portrayals of relationships. 8 pps (4500 words); Argentinian dialect; some very funny moments.

The ones we sent away

The author found out at age 12 that her mother had a sister who was institutionalized before age 2 with intellectual disabilities that left her unable to speak. She traces her aunt’s life through various institutions, most of them deplorable, and hears her mother’s grief over the separation from her only sibling. She contrasts the attitudes and treatment of such disabilities in the 1950’s through the 1980’s with much more open acceptance and inclusion of nonverbal persons in the 2020’s, based on a photo that went viral on Twitter. Detailed memoir of three generations’ relationships with the sister: the author’s grandmother, her mother, and herself. Traces the evolution of attitudes toward intellectual disabilities in the 20th and 21st centuries from close relationship to the issue, noting that children born today with her aunt’s condition are able to live much fuller lives because of greater inclusion in educational, social and family contexts. Includes many links to relevant sources, from memoir to scientific works. About 15 pages; also has audio version.

Accessible Narrative Medicine digital library

The Accessible Narrative Medicine digital library includes outlines for narrative medicine workshops, as well as “third objects” (poems, short essays, stories, images, items that can be the catalyst for conversation, reflection, and writing).

The goal of the site is to encourage the practice of narrative medicine in a wide range of community settings by making available detailed workshop outlines and resources that can be adapted by community workshop facilitators for their particular audience and setting. The developers of the site believe that “narrative medicine workshops should be led by trusted members of a community. In order to create an inclusive safe space, the content and leadership of a workshop should reflect the lived experience of those attending.” The outlines and materials focus on the health narratives of BIPOC, LGBTQ+, and persons living with disability.

Registration is required to access the materials; once registered, site users can find workshops on core narrative medicine ideals, including attention, witness, and re-presentation. The library of third objects is searchable by topic and genre and includes not only written works but also images and art. The site has secured permission for use of narratives and many of the third objects include a bio for the author/artist, as well as a downloadable PDF of the object.

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.

A Body, Undone: Living on After Great Pain

“A Body, Undone” is a memoir by Christina Crosby, an English professor chronicling her life after a paralyzing cycling accident in 2003. A respected English professor at Wesleyan University, Crosby explores the physical and emotional pain of her disability through a critical feminist and queer thinking lens. She puts into words the experience of life in a broken body that seems beyond the reach of language and understanding, discussing how we construct a livable life in the midst of unimaginable pain. She situates her personal narrative within the broader social critiques of care labor and the financial burden of disability and injury within the current economic systems and structures in the US. The novel would be relevant to disability studies and feminist theory, but its prose that is rooted in humanity and the events of daily life function to make it accessible to a general audience . This book is a patient narrative that challenges the dominant discourse of disability, and could be relevant to discussions about disability, pain, and care and its intersections with gender, sexuality, and class.

States of Grace

The film States of Grace intimately captures the profound transformation of a revered physician and her family in the wake of a life-changing accident. Dr. Grace Dammann, a pioneering AIDS specialist and devout Buddhist who was honored by the Dalai Lama, was driving across the Golden Gate Bridge on her routine commute when another driver crashed head on into her car. After seven weeks in a coma and a dozen surgeries, Grace miraculously awoke with her cognitive abilities intact, though her body was left shattered. States of Grace follows her return home to where her partner Nancy “Fu” Schroeder becomes Grace’s primary caregiver, while also caring for their teenage daughter Sabrina, who was born with cerebral palsy. Grace, meanwhile, must reconcile her joy at still being alive with the frustration of being so dependent on others. Through verité footage and interviews with doctors, family, and friends, the film paints an inspiring portrait of devotion and trust as it delicately documents one woman’s fight to reinvent herself.

Through Grace and Fu’s story, this film explores many aspects of health studies, including the shift from provider to patient, role redefinition when a family member becomes a primary caregiver, the role that spirituality can play in healing, parenthood, and more.

The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son

“The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son” by Ian Brown is a deeply personal memoir that chronicles the author’s experiences with raising his son, Walker, who was born with a rare genetic disorder called Cardiofaciocutaneous Syndrome, or CFC. The book explores the challenges, joys, and complexities of caring for a child with special needs. He explains that his son sometimes feels like the man in the moon, and he knows there is no man there. This book chronicles his exploration of why his son, then, feels so important to him. He explains how deeply he wants to know his son’s thoughts, but this question always brings him back to what goes on in his own head. Specifically, he brings up issues of the child he thought he would have had, what a normal childhood looks like, what a normal parenthood looks like, and the grief (and joys) of having a child who is not like other people. He explores, too, how amazing and perspective-changing it can be to love someone who has unique medical needs and functionality. He feels very thankful for his life with his child, despite the challenges. Brown shares the intimate details of their life, discussing the impact of Walker’s condition on daily routines, relationships, and perspectives on parenthood. He discusses how he spends much more time with his child, and contemplates the fact that Walker cannot be independent or grow into independence like other children. He learns that love and parenthood is unconditional, and how to love someone who can’t form relationships the same ways as many people do. The narrative delves into the medical aspects of CFC, as well, spreading awareness about this disorder. As Brown grapples with the emotional and practical aspects of caring for Walker, he also reflects on the broader themes of disability, acceptance, illness, and what it means to be a father.

This memoir could be used in a class interested in discussing the implications of illness and disability for a family. It addresses the complexities at home caretaking and a rare condition, making it a good book to read for students wanting to understand home care and disability in childhood. Classes hoping to engage with first-person narratives addressing childhood illness could also use this book as an example of a caretaker’s narrative. With this, individual chapters of this book could be used to explore the questions this story raises. Brown’s writings, at any point in the story, could be discussed and used in a class discussion.

To Preserve My Health, I Had to Learn to Truly Do Nothing. It’s Harder Than It Sounds

In “To Preserve My Health, I Had to Learn to Truly Do Nothing. It’s Harder Than It Sounds,” Anastasia Chipelski shares a personal journey of navigating the challenges of chronic illness. She does not specify which chronic illness(es) she has, but explores a general experience of needing to ration energy when one’s body doesn’t work how it should. She tells about the ways she struggled before diagnosis, oftentimes just collapsing on the floor after work, and how she manages it now, like propping her arm up while brushing her teeth. She reflects on the necessity of embracing periods of rest and idleness to manage their health effectively. Chipelski explores the difficulty of societal expectations that prioritize constant productivity and the struggle of redefining success in the context of chronic illness. The article provides insight into the author’s experiences and the broader societal attitudes toward rest and wellness in the face of chronic health conditions.

With this, she explains how the world can view sick people as lazy, especially when it is an invisible illness, raising questions about how and why we see illness. She proposes patience and rest for people with chronic illnesses, beginning a conversation of how a community can also be utilized to support those with chronic illnesses.

This could be used in a course interested in exploring disability, chronic illness, and invisible illness. Students could discuss Anastasia’s story, and the importance of reading a casual, first person narrative that does not address one illness in particular, but rather, her individual experience with chronic illness in general. This could be a useful piece to read for people in healthcare or studying healthcare to understand the at home experience of someone with an invisible illness.

Sick Woman Theory

Sick Woman Theory by Johanna Hedva is an exploration of the intersection of illness, disability, and feminism. Hedva challenges traditional notions of productivity and success, advocating for a reevaluation of societal attitudes toward bodies that deviate from the norm. The theory delves into the experiences of sick and disabled individuals, highlighting the systemic issues they face, and calling for a more inclusive and compassionate understanding of chronic illness. Hedva’s work prompts a reconsideration of the value placed on health and challenges the ableist structures ingrained in society.

Specifically, Hedva provides a story of when they were unable to participate, in the streets, during the Black Lives Matter protests. Due to their many illnesses, including PTSD, anxiety, fibromyalgia, and endometriosis. Hedva describes chronic illness, writing, “I have chronic illness. For those who don’t know what chronic illness means: the word “chronic” comes from the Greek “chronos,” χρόνος, which means “time” (think of “chronology”). In certain contexts, it can mean “a lifetime.” So, a chronic illness is an illness that lasts a lifetime. In other words, it does not get better. There is no cure.” They explain the implications of chronic illness in times of resistance.

This source could be used in a course discussing disability and chronic illness, especially when focusing on intersectionality. It raises questions about who is allowed to participate in society, and how they are allowed to participate. Hedva affirms the experience of disabled bodies, advocating for resistance through rest. Courses interested in illness and politics, illness and relationships, and how disabled bodies can mobilize without moving would benefit from this reading.