Annie's Coming Out, by Rosemary Crossley and Anne McDonald

It's not often that a book makes me cry.  This book made me cry.

Several months ago I read William Horwood's unique and powerful novel Skallagrigg (read my review here), which follows a young girl's journey from an institution, where she had been placed by her family due to her cerebral palsy, to independence.  Mr. Horwood commented on my review, noting that one of the inspirations for Skallagrigg was Annie's Coming Out, the story of Anne McDonald's journey from isolation in an institution--and in her own body--to communication, interaction, and self-determination.

So what's so sad about that?  First of all, it's heartbreaking to read about the conditions under which Annie and her peers lived.  Institutionalized their entire lives, these children, who had cerebral palsy or other severe disabilities, were trapped in a sort of limbo.  The parents had placed the care of the children in the hands of the hospital.  The hospital had written the children off as little more than vegetables.  They suffered under the most horrible forms of abuse and neglect imaginable.  Annie was a teenager before Rosemary Crossley came to work at the hospital and began experimenting with different  means of communicating and began to build relationships with Annie and the other children.

In spite of the progress Crossley made with the children, using progressively more complex methods by which the children could spell out words and sentences, her superiors refused to acknowledge that the children could think and communicate on their own.  Eventually Annie began to assert herself and started a legal fight for her freedom from the hospital.  Eventually, to the chagrin of the hospital and government overseers, Annie won her freedom, setting a precedent for legal rights of the disabled.

Anne, pictured here with Crossley, died in 2010.

By improving her communication and bringing her case to the attention of the courts, Annie's case drew unwelcome attention to the hospital and its treatment of children.  Hospital officials began to retaliate by separating communicative children from one another and ramping up the neglect.  Annie lived in Australia, and the events of the book take place in the 1970s, but I am sure the attitudes and conditions described prevailed in the U.S. then, and, in spite of many improvements in care and therapy, are probably still around today.  Reading Annie's Coming Out will make you want to stand up for the civil rights of disabled, institutionalized people in your community.

The saddest portion of the book, the section that put me over the edge, was Annie's reaction to her friend Stephen's death.  As part of the hospital's retaliatory measures, Stephen was isolated from other patients and not allowed visitors.  He was given no means of communicating.  In his isolation and lack of hope, he died.  Annie writes: "Stephen's death was the end of my belief in God.  Previously I had wanted to believe in a caring God, who could love even people like us.  No one who loved Stephen could have let him die a prisoner of his own body and of the Health Commission."  I believe in a loving God, but I can scarcely blame Annie for her attitude, heartbreaking as it is.  My prayer is that others in her shoes will get a taste of the grace and hope God offers.

Skallagrigg, by William Horwood

Earlier this year my whole family read and loved Sharon Draper's Out of My Mind (review here), a novel told from the perspective of a young teenage girl who has cerebral palsy.  That wonderful book gives insight into the life of this girl and any other individuals who have difficulty communicating due to physical disabilities, and the frustrations they experience when their mind can't connect with the minds of others.

An Amazon.com review of Out of My Mind referred to another novel with a similar theme, William Horwood's Skallagrigg.  Following the lives of Arthur and Esther, who both have C.P., Horwood delves into not only the communication challenge, but the culture of the disabled and the changing role of institutionalization in the 20th century.  Arthur, in the early part of the 20th century, is institutionalized as a boy.  He begins to tell stories of the Skallagrigg to his friends, and the legends grow, passed along from one institution to another.  Esther, in the latter part of the century, hears bits and pieces of these stories, begins to compile them, and incorporates them into a video game which becomes a world-wide hit.  Her whole life turns into a quest to find the Skallagrigg.

Without getting too much into or giving away the story, several elements are worth noting.  First, the system of institutionalization of the disabled in England.  Arthur, institutionalized most of his life, suffered terrible abuse by those charged with caring for him.  With no means to communicate, and inadequate supervision, the abuse continues for years.  Although not the main purpose of the book, Horwood's depiction of the institutions and the changes and reforms over the course of the story make me glad for more humane and enlightened treatment of others.

Second, Horwood describes a subculture of the disabled that I never thought about.  With limited ability to communicate with others, people with C.P. communicate with a combination of speaking (as they are able), gestures, sounds, and eye movements.  I love the way the characters manage to communicate on a different plane from the rest of us, and create a unique community and relationships that others are only dimly aware of, if at all.

Finally, Horwood traces the development of assistive technology for disabled persons.  Esther's father, a high-tech executive who got into the field early on, directs the resources of his computer company to develop specialized keyboards and devices to help Esther and others communicate like never before.  Of course we all think of the brilliant Stephen Hawking and shudder to think of how different his life would have been had he been born a few years earlier.  But even non-genius but perfectly intelligent people benefit from the efforts of the non-fiction counterparts of Esther's dad.  Like Melody in Out of My Mind, Esther's life is completely changed by the simple ability to type.

Besides being a story that brings insight into the life experiences of people with cerebral palsy and the improvements that have come in treatment and communication, Skallagrigg is a thoroughly enjoyable story of a young woman's quest.  It doesn't pack the emotional punch of Out of My Mind, primarily because it's a densely told, intricately plotted novel of over 700 pages, versus OOMM's 300 pages, written for a younger readers.  But with the additional length comes a more satisfying and substantial read.

I highly recommend Skallagrigg for anyone who comes into contact with people with cerebral palsy or other disabilities.  It's guaranteed to broaden your view of people with disabilities.  Besides that, though, it is a beautiful story, beautifully written.
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First published in 1987 in the UK (I'm not sure if it was ever published in the U.S.), Skallagrigg was not the easiest book to find.  I got it through ILL at the FW library.  Because I want to read it again and share it, I have ordered a copy from Amazon.  If you are reading this and would like to read the book, let me know and I will lend it to you.

Also, for an abbreviated but still decent portrayal, the BBC produced a movie version in 1994.  You can watch it on youtube.

Out of My Mind, by Sharon Draper

A few weeks ago, Kelly wasn't feeling well so I took off work to fill in for her at the kids' Valentine's Day parties at school.  First I went to Chloe's second grade class.  Chloe is non-verbal and has some physical limitations and development delays due to an unidentified genetic disorder.  Prior to this year, she has been in special ed classes, with part of her day spent in regular ed classes.  Now she is in a regular ed class all day with a full-time assistant and is the only child in her class with special needs. 

As I sat and watched her interact with the other kids at her table, the other kids' interactions with her impressed me.  Without fail, they were sweet, helpful, friendly, and even conversational.  Chloe will nod in response, but does not speak, and does not make a lot of eye contact.  Yet these kids spoke and interacted with her as if nothing was different about her.  One of the little girls asked me if I was Chloe's daddy.  I told her I was.  She said, "Chloe and I are best friends!"  I'm telling you I almost lost it there; I had to exercise lots of self-restraint not to cry in front of her.  I loved seeing Chloe, who is content to play alone in her room for hours on end, in this setting, with such great support from her peers.

Then I went to help set up for Elliot's 6th grade party and was intercepted by one of his teachers.  Almost breathlessly, she said, "I read a book you have to read.  It's called Out of My Mind, and I thought of Chloe the whole time I was reading it!"  She had told Elliot the same thing, so he read it and told Kelly about it so she read it, and since they liked it so much, I picked it up yesterday.  I hardly put it down and finished it in a day.

Not only did I think of Chloe as I read, but I thought of Kelly, me, and Chloe's teachers and assistants.  In Out of My Mind, Melody, the 11-year-old protagonist, has cerebral palsy.  Though confined to a wheelchair and unable to speak, her mind is active, brilliant, and and capable of remembering anything she reads, sees, or hears.  Much of her school years have been spent in boring, humiliating special ed classes.  When she can read thousands of words, of course she gets upset when the teacher is teaching the alphabet.  Finally, through her own initiative and the persistence of her assistant and her family, she gets an assistive communication device, giving her a voice for the first time in her life.  Finally she can communicate verbally and participate more in school, even helping the school's quiz team qualify for the national finals.

Throughout the story, my heart broke for this precious girl, bringing me to tears on several occasions.  How frustrating not to be able to makes oneself understood.  How isolating not to be able to interact with people around you.  I, of course, kept thinking of Chloe, my smart little girl who has such a hard time communicating.  I don't know that she has a photographic memory like Melody, but I know she's always been smarter than we know.  What's going on in her mind that we can't see or hear?  How many inane, boring lessons has she sat through, thinking "I know all this!  Stop with the baby lessons!"  And when Chloe watches the other kids run and talk and laugh and play, does she long, like Melody, to be a part?  Does Chloe get embarrassed by her difficulty in feeding herself, that she wears diapers at age 9, that she rides the handicapped bus?

I thought of Kelly as much as I thought of Chloe.  Melody is a lucky girl in that her mom never gives up believing in her.  She has to come to bat for Melody time and again, sometimes in a militant way.  In the same way, Kelly has been Chloe's biggest advocate, her momma bear instincts pushing and pushing to make sure Chloe gets services she needs and is in the best placement for her growth.  And the link between Melody and her mom could just as well describe Chloe and Kelly.  Kelly knows what Chloe's every little gesture means, and usually knows what Chloe's thinking.  She can tell by looks if Chloe feels bad, and can smell when she's thirsty.  Weird.  Melody's dad plays a smaller role, like me; he's not as clued in to his daughter as the mom, but does all he can do to help.

Draper is a long-time teacher--honored as National Teacher of the Year in 1997--and the parent of a child with "developmental difficulties" (her description) so it's no surprise that her classroom scenes and dispatches from the special ed classroom seem so real.  And her appreciation for the special ed assistants should be noted; I agree with Draper--those folks do wonderful work for way too little money.  I for one am so thankful for the faithful ladies who have fed Chloe, changed her diapers, and invested in her learning and development during her school years.

Out of My Mind gives the reader a believable window into the mind of a disabled individual.  But Draper's real target audience is the rest of us.  As Draper says on amazon.com, Out of My Mind is "written for people who look away, who pretend they don't see, or who don't know what to say when they encounter someone who faces life with obvious differences. Just smile and say hello!"  I may be too honest in this admission, but this book has reminded me to take more time with Chloe, to remember that even when she acts like she's in her own world she is hearing and seeing and taking it all in, and that it's up to me, Kelly, and all of Chloe's support team, to work together to help Chloe take part in her world and to overcome the challenges in her life.