By Sandy Carpenter
MS4 at the University of Connecticut School of Medicine
Member of MSDCI and the UConn Disabilities Interest Group (UConn DIG)
Ah, it’s finally summer! There is no better time to lounge in this sluggish heat and relish a good book! I know I’m excited for a little distraction since my to-be-read list has been stagnant for months. Although it can sometimes feel like a chore to pick up a book outside of lecture or clerkship, reading for pleasure has helped me stay engaged, informed, and passionate about disability advocacy. Since few medical curricula have yet to incorporate teachings from disability studies, reading in my free time allows me to learn more about disability issues and how they intersect with other issues in healthcare and social justice. For anyone and everyone interested in disability perspectives and a little distraction as well, here is a short-list of my all-time favorite books on disability for your summer reading list! Happy reading!
https://thenewpress.com/books/beasts-of-burden
Hands-down one of the most thought-provoking books on disability justice I have ever read. Written by artist and activist Sunaura Taylor, ‘Beasts of Burden’ is an eloquent integration of poignant self-reflection, persuasive argument about the intersection between disability and animal rights, and compelling case for plant-based eating. Taylor dismantles the division between human and animal, forging unexpected connections that compel the reader to reconsider what it means to be disabled in this world. Taylor also addresses several complex and highly debated bioethical concepts in this book with a refreshing perspective. I highly recommend!
https://www.dukeupress.edu/brilliant-imperfection
This absorbing blend of memoir, history, and critical analysis raises provocative and imperative questions about ‘cure’, something that medical students tend to consider an unequivocal good. While ‘cure’ is often posited in medical teachings as the solution to suffering, activist Eli Clare meticulously dissects through the nuances of ‘cure’ and how the concept impacts the lives of people with disabilities, including his own. The author’s poetry and musings on ‘cure’ are seamlessly interwoven into contentious bioethical discussions on topics such as forced sterilization, selective abortion, healthcare priorities and resource allocation. Clare changed entirely my views on ‘cure’ as it impacts disabled people in the present and not-so-distant future. You won’t be able to put this book down!
Probably the most insightful and thorough analysis of disability issues in healthcare I have read yet! ‘More Than Ramps’ is written by two prominent disability activists and researchers, so it goes without saying this is an expert-level guide for healthcare professionals. For the ambitious student deeply interested in health inequities for people with disabilities, this tour de force of a book will undoubtedly inform your training and how you practice medicine in the future. Iezzoni and O’Day include hundreds of patient testimonies describing the most pertinent barriers to healthcare for patients with disabilities, including a complex health insurance system, breakdown of interpersonal communication, lack of provider knowledge and training, and inaccessible healthcare environments. In addition to detailed explanations of these barriers and their root causes, the authors offer fundamental guidance to healthcare providers to prevent and mitigate these barriers. If you have the time to really sit and digest this excellent book, I strongly recommend you do so!
https://disabilityvisibilityproject.com/book/
This book is a mosaic masterpiece arranged by activist Alice Wong, who is also the founder and director of the Disability Visibility Project (https://disabilityvisibilityproject.com/). Wong includes perspectives from physicians, scientists, lawyers, parents, artists, and many others with disabilities and chronic illnesses. Organized into four parts, these brilliant essays complement each other like a chorus in glorious harmony to express the hope, resilience, and unstoppable interconnectedness of the disability community. The writing is uniformly impeccable, offering insights into thorny disability issues, such as eugenics, stigma and discrimination in prison, inaccessible transportation, and interpersonal violence. And at the end of the book, there is even more suggested reading for you to explore. Because of its mosaic nature, this book is ideal to unwind with at the end of the day when you can read one piece at a time. However, if you’re like me, you will find it difficult to read slowly!
https://www.nytimes.com/column/disability
Sometimes there’s just not enough time to pick up a new book, and that’s ok! If you’re pressed for time or not in the mood to start a book entirely, I recommend browsing the New York Times disability column which publishes essays, art, and opinion pieces on disability. Each post is uniquely brilliant and offers cutting commentary on the times. This is especially true in light of the recent COVID19 pandemic when writers called our collective attention to the healthcare disparities and injustices experienced by disabled people at this time. Students can typically access the column through their institution. Browse at your leisure!
https://www.netflix.com/title/81001496
Alright, I know this isn’t technically a book, but my list felt incomplete without mention of this excellent documentary co-produced by the Obamas. It is currently available on Netflix. This film is undeniably critical for healthcare trainees to watch at least once, not only to hear vital disability perspectives from prominent activists but also to understand the forces behind the disability rights movement in America. ‘Crip Camp’ exemplifies the power of community as it artfully depicts camplife at Camp Jened, a summer camp for disabled people, and how camp relationships and adventures spurred the disability rights movement. Playful clips from Camp Jened are connected to momentous moments in disability history through masterful storytelling. Put this film on your watch list!
