Three memoirs remain on the shortlist; three windows onto living with disability or caring for a relative with an incapacitating mental illness.

First up is a visual artist’s account of growing up with spina bifida, entering Disabled culture, and forming a collaborative style all her own.

Golem Girl: A Memoir by Riva Lehrer (2020)

“My first monster story was Frankenstein,” Lehrer writes. Like Dr. Frankenstein’s creation or the Golem of medieval Jewish legend, she felt like a physical monstrosity in search of an animating purpose. Born with spina bifida, she spent much of her first two years in Cincinnati Children’s Hospital and would endure dozens of surgeries in years to come to repair her spine and urinary tract and attempt to make her legs the same length. In 1958, when she was born, 90% of children with her condition died before age two. Lehrer’s mother, Carole, who grew up in a family pharmacy business and had worked as a medical researcher, was her daughter’s dogged health advocate. Carole fought for Riva even though she was caught up in her own chronic pain after a botched back surgery that left her addicted to painkillers.

Lehrer went to a special school for the disabled in Ohio. It was racially integrated (rare at that time) and offered children physical therapy and normal experiences like Girl Scouts and day camp. But it was clear the teachers didn’t expect these children to achieve anything or have a family life; home ec classes just taught how to wash up from a wheelchair and make meals for one. One horrible day, a substitute teacher locked a classroom door and hectored the children, saying their parents must have drunk and fornicated and they were the wages of sin.

Between the routine or emergency surgeries and family heartaches, Lehrer grew up to attend art school at the University of Cincinnati and Art Institute of Chicago. Professors (most of them male) found her work grotesque and self-indulgent, and she struggled with how to depict her body. There were boyfriends and girlfriends, even a wife (though in the late 1980s, before same-sex marriage was legally recognized). In 1996 she joined the Chicago Disabled Artists Collective and it was a revelation. She learned that Disabled (like Deaf) is a cultural identity as much as a physical reality, adopted vocabulary like crip (a reclaimed term, like queer) and ableism, and began painting fellow artists with dwarfism, prostheses, or wheelchairs.

Becoming a member of the Medical Humanities faculty as well as a visiting artist at two Chicago universities, the School of the Art Institute and Northwestern, gave Lehrer access to Gross Anatomy Labs, where she found in the historical collections – just as she had at the Mütter Museum of medical curiosities in Philadelphia – a fetus in a jar with her very condition. Knowing that she might be the first Disabled person her budding doctors met, she was determined to give them an “inclusive vision” of “the reality of human divergence.” She would have the medical students draw one of the jarred specimens, not as an oddity but as an individual, and give a 15-minute presentation about someone who lives with that disability.

Golem Girl is a touching family memoir delivered in short, essay-like chapters, most of them named after books or films. It is also a primer in Disability theory and – what truly lifts it above the pack – a miniature art gallery, with reproductions of paintings from various of Lehrer’s series as well as self-portraits, family portraits, and photographs. “I fiercely wanted to see a gallery filled with portraits of luminous crips,” she writes; “I suspected I was going to have to make them myself.” And that is just what she has done. The “Circle Stories” featured the Chicago Disabled Artists Collective and “Mirror Shards” included animal daimons, while “The Risk Pictures” of some of her personal heroes were daringly collaborative: she would give the subject an hour alone in her studio with their portrait in progress and allow them to amend it as they wished. Much of her work has bright colors and involves anatomical realism and symbols personal to herself and/or the subject – with Frida Kahlo an acknowledged influence.

I’ve now (just about) read the whole Barbellion Prize shortlist. For how it illuminates a life of being different – through queerness in addition to disability, engages with the academic fields of anatomy and Disability studies, and showcases the achievements of Disabled artists, this would be my clear winner of the inaugural award, with Sanatorium my backup choice. It is also a finalist for the National Book Critics Circle Award for Autobiography.

Readalikes I have also reviewed:

• Constellations by Sinéad Gleeson
• I Am, I Am, I Am by Maggie O’Farrell

Favorite lines:

“The hospital demands surrender. You accept the piercing, the cutting, the swallowing of noxious chemicals. You roll over and stand up even when it’s as impossible as flying around the ceiling. Whoever has authority can remove your clothes and display your stitched-up monster body to crowds of young white-coated men. You’re an assemblage of parts that lack gender and those elusive things called feelings.”

“‘Normal’ beauty is unmarked, smooth, shiny, upright; but my gaze began to slip past normal beauty as if it was coated in baby oil. I wanted crip beauty—variant, iconoclastic, unpredictable. Bodies that were lived in with intentionality and self-knowledge. Crip bodies were fresh.”

With thanks to Virago for the free copy for review.

See my introductory post for more about the Barbellion Prize, which is in its first year and will be awarded on Friday “to an author whose work has best represented the experience of chronic illness and/or disability.”

I will review the final two on the shortlist, The Fragments of My Father by Sam Mills and Kika & Me by Amit Patel, tomorrow.