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his year we celebrate the 25th anniversary of the passing of the Americans with Disabilities Act (ADA). Since that day in 1990, countless books have been published detailing stories about growing up with a disability, or the joys and tribulations of raising a child with a disability.
“The Boy in the Moon” – Ian Brown
Canadian author and journalist Ian Brown details the struggles and joys of raising his son, Walker, a boy born with a rare genetic disorder that left him with multiple, severe, disabilities. Brown is brutally honest in his account of Walker’s childhood. He remembers sleepless nights of snaking IV tubes and diaper changes and a boy smashing his head against the wall for reasons Brown will never truly know.
The celebration of his son may not always be obvious, but why should it be? Walker is a boy like any other, and parents will recall the terrible nights of raising a child, just as they remember the joyous moments as well. The book also offers an intimate look into the bureaucracy of disability in Canada – from Brown’s struggle with well-meaning social workers in Walker’s infancy to his desperate attempts to find Walker a suitable group home. Most profound though, is the theme that weaves itself through the book: the meaning of humanity.
What can we learn from humanity, from being human in the moment and for the moment? When Brown and his wife are at their wits end, they take Walker to a Shaman who tells them that Walker’s quest is to see his reflection in the water at the bottom of the well. Walker’s quest in life is to recognize his humanity. Brown often refers to Walker as his “broken boy,” but for the first time, someone wasn’t trying to fix him. They let him be broken because he was only broken to them. In that moment, he was just Walker, the boy.
“Far From the Tree” – Andrew Solomon
This tome of a book offers 12 chapters, each one focusing on what Solomon calls a “horizontal identity” – an identity not directly passed from parent to child. Most of the chapters focus on various disabilities: Down Syndrome, autism spectrum disorder and one chapter titled simply, Disability. What makes the book so special is that it draws from a wealth of sources. He interviews parents, grandparents, scientists, individuals with disabilities and organization leaders.
Through these interviews, an intimate portrait develops of what it means to be different in a world that fears it. He writes, “Children with horizontal identities alter your self painfully; they also illuminate it. They are receptacles for rage and joy-even for salvation. When we love them, we achieve above all else the rapture of privileging what exists over what we have merely imagined.”
“An Uncomplicated Life” – Paul Daugherty
Daugherty begins his book by recounting the first time his daughter, who has Down Syndrome, rode a bike by herself. It’s hard not to tear up as he describes the moment he sees his daughter sail down the driveway. It’s something almost all parents experience, just not parents of kids with Down Syndrome. That chapter defines the entire book and the arc of his daughter’s whole life: breaking barriers, proving people wrong and, of course, what most father-daughter books are about at their core: unconditional love. This book is particularly appropriate in light of the ADA anniversary as much of it revolves around the Daugherty family’s fight to include their daughter in mainstream classrooms as opposed to special education, thanks to the Individuals with Disabilities Education Act.
abelsone@stolaf.edu
