Getting Life


by Julie Shaw Cole.


“That light hits the side of the red roof at a different time each afternoon. I sit in the same place by the window every day. This window is on the other side of the street from that red roof. And I watch the light change just slightly each day, brushing back the shingles into shade, like gray paint rubbed into red.

“There are pictures I remember in a book, churches, all alike, yet all different. There is one fat old soft chair. I am propped up on folded clothes and an old raggy pillow. Aunt Jo puts that book in my lap and leaves me to go do what she does. . . .”

From Getting Life.

303 pp. Paperback. | Audiotape. | eBook
ISBN 0962706485 | Copyright 2000
Paperback (buy online) | Kindle | ePub


Getting Life does what few others do. It gets into the mind of the primary character in a way that draws you into her world so completely you don’t want to let her go.
What makes this so interesting a task is that as the novel begins the protagonist, Emily, is a non-verbal, nursing home resident who has sat like a lump on a borrowed wheelchair for most of the past seventeen years. But Emily is not a lump; she is a thinking, feeling human being who has never had the opportunity to show her stuff. Raised by an aunt and uncle after her mother was killed in an accident Emily is subjected to tender care from her uncle and abuse and despair from her aunt. When both these relatives die, she is dumped into the nursing home where she believes she’ll stay forever.

In one of the novel’s many ironies, it is neglect and abuse that changes Emily’s life. She is so badly neglected by a member of the nursing home staff that she finds herself in a hospital-and that turns out to be the best thing that could have happened for her. An empathetic doctor sees that there is more to Emily than meets the eye and begins a course of liberating Emily from the nursing home.

This doesn’t happen overnight. Just like in real life, Emily has lots of time on her hands in the nursing home, which has been home for many years. She’s not that eager to just up and leave. And how can she, she wonders, since she doesn’t speak; she can’t walk, no one outside of the nursing home will take care of her and on and on. Emily shares her struggles, her pains, her triumphs with us on the path to freedom with which the book concludes.

This is a triumphant story, but more importantly it’s a fascinating one which takes us into the minds of several nursing home residents, touches on the lives of several staff members of an independent living center and includes an ADAPT-like group for emphasis. As I read, my only regret was that not every town has an independent living center like the one in the book-patient, knowledgeable, resourceful, and persistent.

The highest praise I can give the book is this. Reading it was the last thing I did last night and finishing it was the first thing I did upon waking up in the morning. I couldn’t wait to see how Emily began her life. GETTING LIFE has joined Jean Stewart’s THE BODY’S MEMORY and Anne Finger’s THE BONE TRUTH as the best novels I have read about the daily experience of disability. It should be in every CIL and anyone interested in the state of disability consciousness in the new millennium should find a copy.

GETTING LIFE does an incredible job of acknowledging too often unheard voices. Now it’s up to us-the reading public-to see that GETTING LIFE finds a home throughout public and private libraries all over the world.

–Steven E. Brown, Institute on Disability Culture

It is fiction, but it likely describes the lives of many persons with disabilities. The reader should not fear, however, that this is a preachy or depressing narrative about the perils of nursing home life. The story is written from Emily’s perspective, and Emily is very funny, imaginative and downright spunky. Her unexpressed thoughts will move the reader to laughter as often as tears.

In addition to being a great read, this book needed to be written to call attention to the Emilys in institutions far and near and to gather backing for initiatives to support these folks in their efforts to live in the community and enjoy a more independent and fulfillling lifestyle. As Emily vividly demonstrates, people with disabilities enhance our lives by being in our midst.

–Reba Pierce, Kentucky Monthly