ABLE IN A
ABLED: HOW I LEARNED TO LOVE LIFE
A Memoir by Evin Hartsell with Celia Watson Seupel -- looking for a publisher.
Walking down the sidewalk, or perhaps strolling in the mall, have you ever encountered a person in a wheelchair coming toward you, a person who is distorted and strangely twisted, maybe with a tube in his throat, maybe nudging his wheelchair joystick with one narrow finger on a hand splayed backward? And have you ever given that person a wide berth and averted your eyes; have you ever quickly passed and even more quickly forgotten?
Evin Hartsell is that person, and ABLED will revolutionize the way you see disabled people forever.
This 62,000 word non-fiction narrative with photographs tells the story of how a young man born with merosin-deficient muscular dystrophy, a fatal and crippling disease, learns to overcome rage and despair to embrace his disability and love life just as it is.
Ever since the passage of the American Disabilities Act in 1990, people with disabilities have been coming out of the shadows, trying to claim the right to an independent life. But most of us can’t imagine the journey of a physically disabled person because the greatest struggle is not what we can see: the body’s deformities, the physical limitations. The biggest struggle is the unseen: the social awkwardness and rejection; the rage; the struggle to find a place in the world.
ABLED will give you a first-hand experience of what disability means as well as what it doesn’t. This book vividly portrays what it takes for all of us – abled and disabled – to evolve into our better selves: courage, honesty and friendship.
ALBED: HOW I LEARNED TO LOVE LIFE is not only a “fantastic journey” inside the body and mind of a profoundly disabled person, it’s an inspiring, page-turning read. With a strong narrative arc, the story begins in innocence, follows a series of medical and spiritual crises (including a near-death experience of the afterlife) and emerges from the struggle with inspiring resolution. With gratitude and a new appreciation of his own disability, Evin has found his place in the “normal” world.
“Do me a favor,” Evin Hartsell begins. “Sit down in an armchair … bend your wrists backward … bend your chest all the way to the right …” As Evin describes his life with merosin-deficient muscular dystrophy, it is impossible not to feel what he feels, to see what he sees. Narratives from friends, relatives and nurses, written by journalist Celia Watson Seupel, illuminate both his exuberant spirit and the swirling mayhem that Evin pulls down on himself like a giant house collapsing. “My dad,” says Evin, “mentioned some very rude disabled teens at a Muscular Dystrophy Association event. They were angry and sarcastic, not like his son.” Evin laughs. “Little did he know!”
This book is brutally honest, surprising, and funny. Evin stints nothing describing his own downhill slide from speedy wheelchair kid to manipulative teen monster trapped in an unresponsive body. As Evin rejects suicide and soldiers on, the secret to his gradual recovery is revealed in essential truths, each one hammering him in a new, death-defying way: Hope is stifling; action is key. You have to reach your goal in your own way, not society’s way. You haven’t failed as long as you’re still working on it.
And this: There is only one real disability in life, and it is lack of motivation.
ABLED is a book that will inspire anyone who has ever suffered a setback to keep on moving toward the goal.
Most die young from muscular dystrophy, and although Evin did not suffer from its most devastating form, Duchenne, he died at the age of 28 due to a wheelchair accident, just weeks after finishing this book. An epilogue details the emotional events of Evin’s death. A final appendix, based on medical research and interviews with experts, describes the new hope for contemporary gene therapy.
The first-person narrative in this book was spoken by Evin Hartsell and scribed by Celia Watson Seupel. Most interviews were conducted by Celia; a few further interviews were conducted and recorded by Evin. Interviews written up as book chapters by Celia. Celia edited and organized the material into the current book.