ADA – Health Story Hub

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.

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.