Book Marks Spring 2013

Apostrophe reviews books for, by and about people with developmental disabilities

‘Mermaid’ educates readers about cerebral palsy

The Mermaid in the Gherkin Jar

Tony Seymour

(Amazon 2012)

Mermaid in the Gherkin JaryThe Mermaid in The Gherkin Jar tells the story of 8-year-oldChristopher, who has mild cerebral palsy. The author, Tony Seymour,was diagnosed with cerebral palsy at the age of two and draws on his own experience as a child growing up with the condition. The book was written for children of 7-11 years. Christopher is unable to walk without the use of a metal frame. Due to his fragility, he is educated at home with his twin brother, Oliver, until he is strong enough to go to school. However, when Christopher does attend school, he becomes acutely aware of his physical impairment. Furthermore, a run in with the school bully quickly escalates, and for the first time in his life, Christopher feels ashamed of his disability.

The little boy turns to Azalea, a mischievous mermaid, with a disability of her own, who Christopher finds hiding in a jar of gherkins! And so begins a strange and beautiful relationship that will change them both forever…

Raising disability awareness is one of the author’s key aims, as well as educating people about cerebral palsy. Visit www.themermaidinthegherkinjar.com.

 

 

A Guide to Collaboration for IEP Teams

R.M. Nicholas and M.A. Martin  (Brookes Publishing 2005)

A guide to collaboration for IEP teamsWith so many complex, challenging and emotionally charged decisions involved, participating in an IEP (individualized education program) meeting can seem like navigating through a minefield. But now there’s a practical guide to managing these meetings with a high level of awareness, safety and confidence. Developed for administrators, teachers, resource professionals and parents, this skills-based book will help you work as a unified team to design, review and modify IEPs for children with special education needs.

This resource fully addresses:

Effective meeting management.

Discover how to promote and maintain the collaboration that leads to consensus. Highlight the characteristics of model IEP teams and meetings. Have a comprehensive guide to conducting successful meetings, from setting ground rules and managing time to planning agendas and accomplishing goals.

Principled negotiation. Apply a proven approach to building consensus while minimizing conflict. Learn how to use team members’ underlying interests to move from competition into cooperation, while maintaining a positive team spirit.

The emotional side. Examine the central role of feelings as motivators of behavior. Learn how to turn strong emotions into powerful allies, and discover the simple keys that help team members communicate with respect and understanding, work through anger and maintain diplomacy.

Conflict prevention. Discover 25 practical alternatives for resolving conflict before it escalates into debilitating tensions or legal action. Written in a user-friendly and conversational style, this much-needed book is supplemented with checklists, outlines, diagrams and specific examples to make the complex simple. Incorporating the feedback and suggestions of hundreds of special education professionals, this book will be of invaluable help to you and fellow team members as you work together to create the best possible IEPs for the children in your care.

Riding the Bus with My Sister: A True Life Journey
Rachel Simon
(New York: The Penguin Group, 2002)

The Story of Beautiful Girl
Rachel Simon
(New York: Grand Central Publishing, 2011)

By Dr. Henrietta Shirk

The themes ofRachel Simon’s two books, one nonfiction (Riding the Bus with My Sister) and the other fiction (The Story of Beautiful Girl), focus on the question of who speaks for people with disabilities and how they do so. Although published almost a decade apart, Simon’s two books are about the extraordinary power of love and family, and they provide moving insights into the world as experienced by the disabled.

The Story of Beautiful GirlRiding the Bus with My Sister is the true story of one year in the life of Simon and her developmentally disabled sister Beth. Beth is an independent and spirited young woman with an intellectual disability. She spends almost all of every day riding the buses in the Pennsylvania city where she lives. Simon is a successful professional writer and professor who loves her sister but does not fully understand her sister’s personality, disabilities, and lifestyle. This narrative describes the growth of Simon’s acceptance of Beth and her appreciation of Beth’s simple, yet joyous attitude toward life.

At the beginning of the book, Simon describes herself as an emotionally isolated and lonely single woman with an extremely busy schedule that she uses to mask her unhappiness. When Beth asks Simon to accompany her in riding the buses for one year, a transcendent journey is begun that transforms Simon’s life completely. This book is about that transformation. In the process of reading this true story, the reader is also transformed, as well.

Beth is a feisty and joyful person who lives alone and has a boyfriend who is also developmentally disabled. She finds mentors in the lively and diverse group of bus drivers with whom she spends most of her time interacting every day. These bus drivers are her mentors, and together with the passengers on the buses, they form Beth’s community. While not all of the drivers and passengers like Beth (some think she talks too much and is too loud), for most of them she becomes like a family member, sharing not only the physical realities of driving and riding along bus routes, but also personal experiences and support for each other. These interactions include sharing food, birthday remembrances, personal histories, poetry, philosophies of life, and even disagreements.

As Simon experiences riding the buses with Beth, she recounts memories of their childhood that culminated in their parents’ divorce. Although Simon has always tried to protect Beth, she experiences occasional flashes of anger toward Beth’s inability to understand certain things (for example, personal safety and healthy eating), her self-centeredness, and her frequent inability to act in socially acceptable ways. Simon begins to ask herself, “How much is Beth, and how much is Beth’s brain?” In her attempt to understand Beth’s disability, Simon comes to the realization that she herself, the bus drivers, and Beth are all on a journey. As Simon observes, “It’s just that Beth’s bus chugs along a lot more slowly.” Simon learns to appreciate Beth for the person she is, as well as to slow down in her own life to make it more meaningful and enriching. In describing Beth’s life and the world of bus rides in which she exists, Simon provides compassionate insight into the world of people with disabilities. Simon’s love for Beth and for family ultimately prevail after the year of riding the bus with her sister.

Simon’s novel The Story of Beautiful Girl continues the theme of love for family and the act of speaking for those with disabilities. This New York Times bestseller is the story of Lynnie, a young white woman with a developmental disability (limited speech), and Homan, an African-American deaf man, who are both institutionalized in the Pennsylvania State School for the Incurable and Feebleminded, where they have been left to languish, ignored and forgotten by the rest of society. Despite the poor conditions in the institution, some of the abusive staff members, and the couple’s lack of language skills, they share tender moments and fall in love. They also plot to escape from the unreasonable restrictions and appalling conditions at the institution. The deep love between Lynnie (Homan calls her “Beautiful Girl”) and Homan provides the initial trajectory for the beginning of this narrative, the characters’ individual heroic personal journeys, and their ultimate human triumphs.

Simon writes an unforgettable and moving love story about the seemingly impossible difficulties faced by Lynnie and Homan and Lynnie’s female child (later named Julia). On the night of their escape, Lynnie gives birth in the woods outside the institution. Her undetected pregnancy is the result of her cruel rape by a guard in the institution. Beginning in 1968, with the escape of Lynnie and Homan from the institution and the simultaneous birth of Lynnie’s child, the story spans the following four decades. The couple and the baby find refuge in the Pennsylvania farmhouse of Martha Zimmer, a retired schoolteacher and nurturing widow. When the authorities catch up with them on the same night as their escape, Homan narrowly escapes into the surrounding darkness, but Lynnie is caught. Before she is forced back into the institution, Lynnie whispers two words to Martha: “Hide her.” Martha decides to do just that, and so begins a forty-year journey for all four of these characters.

Throughout the narrative, the lives of these characters diverge and unfold separately from each other. For Lynnie and Homan, the memories of their short time together sustain each of them on their separate life journeys. A special bond develops between Martha, who had never before been a parent, and the baby Julia. During a span of forty years, Lynnie learns to speak more clearly, Homan learns to use sign language effectively, and Martha learns to be a parent. Julia ultimately learns who her real mother is, when Lynnie and Homan reunite at the end of the story. Although their lives are divided by seemingly insurmountable odds, as well as physical and cognitive impairments, the characters in The Story of Beautiful Girl are drawn together by their secret pact to each other and their extraordinary and lasting love.

Like the nonfiction book, Riding the Bus with My Sister, the novel The Story of Beautiful Girl is about the life journeys of disabled people. It provides sensitive insight into the complex and often frustrating world that is frequently dismissed or misunderstood by “the abled.” Simon takes the reader into the minds of the disabled through her compassionate real-life experiences and fictional stories, reminding us that we are all essentially human. As Simon states in the question-and-answer section of the “Reading Group Guide” published at the end of her novel, “Everyone deserves to love and to be loved – and to live a life of freedom and meaning, with dignity and respect.”

Finally, Simon’s two narratives demonstrate the power of words and their ability to portray both the outer and inner worlds of others who are different from ourselves. In both narratives, Simon takes the reader into the poignant worlds of the disabled who are often not able to speak for themselves. As Simon comments about the multiple layers of her relationship, trust, and sense of responsibility regarding her sister Beth (in an interview available on the Amazon website for The Story of Beautiful Girl), “We have both always known that, whenever necessary, I will act as a go-between: I will explain to her the things she doesn’t understand about the world, and I will explain to the world the things it doesn’t understand about her.”

In effect, Simon is a go-between and a “translator” who is able to give voice to and speak for the disabled – those who have not been heard. The insights into the complex worlds of the developmentally disabled provided by Riding the Bus with My Sister and The Story of Beautiful Girl are “translations” that are well worth the time spent in reading them.

Dr. Henrietta Shirk is a professor in the Professional and Technical Communication Department at Montana Tech in Butte, Mont., and a member of Apostrophe’s editorial board.

 

 

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