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Book Review
Title: Battle Cries: Justice for Kids with Special Needs, by Miriam Edelson, 2005
Publisher: Toronto : Sumach Press, 2005
ISBN: 1-894549-42-2
Price: $26.95 CAN / $23.95 US
Description: 250 p.
What struck me within the first few pages of Miriam Edelson's book is that her son Jake is dead. She could have just let her commitment to build a better community for he son slide. It takes a lot of emotional energy to be an advocate for social justice; without her raison d'etre, it would be easier to go back to the "old" life she had before her son was born. For Edelson, however, the justice she sought for Jake is not any different from the society she is determined to create for other families. And so, even though it had only been a few months since her son's death just shy of his 14th birthday, she decided to finish Battle Cries.
This book is packed with a lot of information, observations and suggestions for families. She writes, "like so many other parents of children with disabilities, I envisage a society where children now most typically defined by their difference and discriminated against for it would instead enjoy lives characterized by comfort, dignity and child-appropriate physical, cognitive and creative stimulation."
Battle Cries is a dense book. The cover is compelling and the Portraits section with accompanying photographs is more reader-friendly. The book is a hybrid of a parent's personal perspective and social observations, and an academic paper, particularly when Edelson describes her research methodology.
As a parent I kept finding myself wanting to read the personal stories about families in the Portraits section, wanting to meet those people first before wading into the more complex array issues examined in the first section. Edelson provides a section called Meeting the Main Characters: A Collection of Snapshots, each of which describes the families we meet later. Perhaps it is just a personal preference, but I wanted to meet the families first and then learn about the availability of and impediments to current services and supports available to them.
Topics like strategic concerns of community living, social models of disability and inclusion, ethics of care, social policy development, funding structures, physician/parent relationships, continuity of care and so on are all important issues, but make for daunting reading. I found the Portraits section and the final chapters, "Reflection: Drawing Some Conclusions" and "Some Tips About Advocacy: Finding Services and Seeking Support," much easier to digest. However, no one said advocacy was easy, so readers need to take the time necessary to pore through the issues and perspectives.
It is interesting to note a different historical perspective on how and when the "disability movement" began. Edelson suggests it "emerged in Great Britain, the United States and Canada during the 1970s to voice opposition to discriminatory treatment of disabled persons by medical personnel and the rest of society." Yet, this is nearly 20 years after some of the first Associations for Community Living (then commonly called Associations for Retarded Children) were formed by parents in Canada and elsewhere. These were formed in response to the absence of educational opportunities and because of pressure to institutionalize children with intellectual disabilities as the only option for family support.
Nonetheless, Edelson gives a thorough view of history and the development of services, supports and attitudes for and about people with disabilities, integration and segregation. Edelson says that the issues discussed in the first section of the book stem directly from the experiences of the families she profiles in the second. She is not beyond editorializing, however, and making her own personal observations: "The very spokespersons for community living who are demanding that difference be recognized and accommodated are sometimes intolerant of those who choose to make different decisionsÉ."
One of the final chapters, "Some Tips About Advocacy: Finding Services and Seeking Support" is very practical and useful for families regardless of what their philosophical foundation might be. Every parent should have this chapter to use as a guideline no matter what their circumstances or what they are lobbying for.
"Celebrate your small victories together," Edelson advises families, "and then move on to the next challenge." It would seem this book is a celebration Edelson shares with the memory of her son, and in doing so has offered a great deal for other parents to think about.
Review by
Karin Melberg Schwier
Karin Melberg Schwier is a writer and parent of a young man with a disability. Her most recent work includes, from Brookes Publishing, Breaking Bread, Nourishing Connections: People With and Without Disabilities Together at Mealtime (2005) and Sexuality: Your Sons and Daughters with Intellectual Disabilities (2000). She lives in Saskatoon.
Visit: homepage.mac.com/Karin.schwier/copestone.
Email: karin.schwier@mac.com
Miriam Edelson is a social activist, mother and writer living in Toronto. Her literary non-fiction and commentaries have appeared in The Globe and Mail, The Toronto Star, This Magazine and on CBC Radio. Her first book, My Journey With Jake: A Memoir of Parenting and Disability was published in 2000.
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