Phoenix Accessibility Consulting & Training

 To put it mildly, I am not an auditory learner. It’s not that things go in one ear and out the other. It’s that things don’t often make it through one ear. I need to read things in order for information to stick. I look up lyrics to songs on the radio. The captions are permanently on for my TV. I’m the person responsible for the “someone has enabled captioning” pop-up in work Zoom meetings. I request copies of PowerPoint slides in advance. I use an auto-captioning app on my phone for large in-person meetings. I’m on a personal mission to make as much of my world written down as possible. Please do not ask me for podcast recommendations. I don’t have them.

What I do have, though, is a very deep love for reading and a fairly deep list of book recommendations. Here are my five favorite non-fiction disability-focused books and why I think everyone should read them.

1. The Spirit Catches You and You Fall Down by Anne Fadiman. The book details the true story of a Hmong girl who was born in the US to immigrant parents. She was diagnosed with epilepsy as an infant in 1982, and the book follows the four year battle between her parents, who viewed her epilepsy from a traditional Hmong animistic viewpoint, and her Western medical team who viewed her parents’ actions as medical neglect. The book is a great examination of the clash between moral and medical models of disability, and it’s very fair to both sides.
2. The Scalpel and the Silver Bear is the autobiography of Dr. Lori Arviso Alvord, the first Najavo woman surgeon, and her work to combine traditional Najavo beliefs and practices with Western medical advances. This is another good look at the often-explosive interactions of the moral and medical models of disability. It is especially interesting that both viewpoints are coming from the same person.
3. The Immortal Life of Henrietta Lacks by Rebecca Skloot is a great book (& movie) about the intersection of disability, race, and socioeconomic status in medicine. Henrietta Lacks was a Black woman from a poor tobacco-farming community. She was diagnosed with cervical cancer in 1951. Cells from her tumors were harvested for research purposes without her knowledge or consent. Those harvested “HeLa” cells became the first immortal self-replicating line of human cells. They were instrumental in developing the polio vaccine and they are still used in cancer research today. Henrietta’s cancer cells are responsible for untold numbers of lives saved, but very few people knew her name before the book was written. Not even her family knew of the impact their mother, sister, wife, and grandmother has posthumously had on the field of medicine.
4. Haben: The Deafblind Woman Who Conquered Harvard Law is written by Haben Girma. She is a civil rights attorney and advocate. She is the child of Eritrean and Ethiopian parents and she was born Deafblind. Her book predominately examines the educational system and how it talks to and about kids, teens, and adult students with disabilities. It also dives into the intersection of race and disability and explores the differences between US and foreign cultural attitudes.
5. Being Seen: One Deafblind Woman’s Fight To End Ableism is by Elsa Sjunneson. Elsa is also Deafblind from birth, and she is an award-winning science fiction author. Like Haben, Being Seen simultaneously explores and challenges societal expectations on how disabled people should live and behave. The book dives deep into the intersectionality between disability, gender, and sexual orientation.