Burcaw (Not So Different, 2017, etc.) returns with a collection of vignettes relating his life as a 25-year-old white man with spinal muscular atrophy, a debilitating disease affecting his whole body.
With the same frankness and gallows humor that marked his Laughing at My Nightmare (2014), Burcaw’s accounts of madcap road trips, love amid explosive diarrhea, and more demystify and normalize “the nastier side of being human” while critiquing—sometimes poignantly—society’s widespread patronization of disabled people. Readers with and without disabilities will cringe at such indignities as kiddie menus, unsolicited prayers, and the titular assumption. Sometimes he gives nondisabled people the benefit of the doubt...if only to keep from ramming his wheelchair into their cars. “Spinraza” and “If I Could Walk” offer nuanced takes on the “cure” debate, exploring the differences between hope and reality and meeting in between. Despite his claim to the contrary, Burcaw matures (somewhat) as he examines his internalized misperceptions, vulnerability, and fears of being a burden. Through his family, friends, and girlfriend’s support—and a darkly comical role reversal—Burcaw finally understands a truth that readers navigating disabilities will particularly appreciate: “When you love someone with your whole heart, there’s nothing you won’t do to keep them safe and comfortable. It’s not a sacrifice and it’s not a burden; it’s a natural instinct.”
An accessible, smart-assed, and unexpectedly tender exploration of life, love, and disability. (photos, not seen) (Memoir. 14-adult)