Wonder by R.J. Palacio

9780552565974_custom-b8367e7a41f7c527051b3b8024b7924b3e0a113c-s99-c85 Wonder
by R.J. Palacio

Strictly speaking, this book is not about disability, so I’m not exactly sure if it belongs here or on my other book blog.  I guess you could say it crosses over, so I’m going to go ahead and review it here (and there).

Wonder is sort of a hard book to categorize.  At its core, it’s a story about inclusion, although the story takes place in a (fictional) school that emphasizes that it is “not an inclusion school” (emphasis mine), meaning it is not a school that accommodates kids with special needs.  In all honesty, I’m really not sure why the author chose such a setting for such a story.  It seems like the story would have worked very well – and possibly been a bit more relatable – were the setting a regular public school, instead of a rather elitist private school.

In any case, this story, aimed at the pre-teen set, is about ten-year old August Pullman – “Auggie” to his friends and family.  Auggie was born with a collection of syndromes/conditions that have had the main result of severe facial/cranial deformities.  Auggie’s appearance actually frightens people.  Mostly due to the fact that he’s had to undergo countless surgeries over the course of his young life, he’s always been homeschooled – up until now.  Now, as he enters fifth grade, his parents have decided to enroll him in the prestigious Beecher Prep School (again, not an inclusion school – but Auggie doesn’t have special needs anyway, although he does wear hearing aids).   Not surprisingly, Auggie is terrified (but also excited).

Also not surprisingly, Auggie is not well-received at the school by the other students (or by some of the parents).  The oddity of his appearance literally stops people in their tracks.  “Freak” and “monster” are just a couple of choice names he is called.

Told in the alternating voices of Auggie himself as well as numerous supporting characters, the story unfolds over the course of a school year, and the students of Beecher Prep learn hard lessons in tolerance, diversity, compassion, friendship, loyalty, and character.  The ending is predictable, but leaves the reader reaching for a tissue nonetheless.

There were aspects of the story that bugged me: all the “dating” going on with these very young kids seemed unrealistic; the emphasis on Auggie not having special needs (and, of course, a gratuitous exclamation of “I’m not retarded!” thrown in; I’ve said it before and I’ll say it again: there is a hierarchy of disability, and intellectual disability is at the bottom of the heap); and, as I said, the setting of the story in a school that is “not an inclusion school” even though it’s most certainly a story about inclusion.

Don’t get me wrong, though.  I did like the story.  Very much.  It’s very well-written, and I think the author has done a fabulous job capturing the angst and attitude of this particular age group, and this does make it relatable and likely explains why this book is such a hit with kids right now.

Definitely recommend, with the above-mentioned caveats.

 

 

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Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion by Sandra Assimotos McElwee

[Originally posted on April 21, 2014 here]

Unknown Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion
by Sandra Assimotos McElwee

Unlike the countless other memoirs written and published about raising a child with Down syndrome – woman gives birth; woman learns baby has Down syndrome; woman weeps, rails, and wrings hands; woman discovers acceptance and joy in having a child with Down syndrome (I’m not poking fun – this is very much my own story) – Who’s the Slow Learner is a chronicle of the author’s son’s schooling from preschool through high school graduation. This is a sorely needed book in the landscape of disability and education.

Sandra McElwee recounts her determination to see her son Sean, an only child, fully included in general education classrooms. A tenacious advocate, McElwee found what a lot of us parents are finding: that inclusion is much easier to accomplish in elementary school than it is in junior high and high school. From kindergarten through sixth grade, Sean was accepted in his neighborhood public school, and battles for inclusion on his behalf were minimal. The benefits of inclusion were clear: self-esteem, peer modeling, a sense of community and belonging, and far more learning opportunities for Sean, and lessons in compassion, tolerance, and embracing diversity for the other kids and the teachers.

Once Sean entered seventh grade, however, it all changed. He entered a hostile environment of blatant prejudice and exclusion. It took such a toll on Sean’s behavior and self-esteem that his mother finagled for him to skip eighth grade just so he wouldn’t have to return to such an unwelcoming atmosphere for a second year. In high school Sean slowly found his footing and flourished in making a place for himself in the social structure of high school, but acceptance by the teaching staff was still largely difficult and often hostile.

I read this book with great interest in anticipation of my own son’s IEP meeting that would determine his kindergarten placement for the upcoming school year. We’ve already had such terrible battles with our school district concerning our son who has Down syndrome – it’s been emotionally and financially draining, to say the least. I was especially interested because the McElwees are fairly local to me, although not in the same school district, so I thought it would give me a pretty good glimpse of what the future might hold for us regarding Finn’s schooling.

Like I said, this book is different from all the other personal stories of Down syndrome out there, and it fills a gap in the Down syndrome/disability literary landscape that has very much needed filling.

However.

My only criticism – and it’s a big one – is that the writing is very much in need of professional editing. This is a self-published book, and unfortunately, it shows. There are too many inspirational quotes (and too many faith-based passages which tend to alienate readers who don’t share the same beliefs), too many typos, not enough formatting, and not enough polish. It really needs a professional hand – especially for the price (ten bucks for Kindle and eighteen bucks for paperback). I think this book fills such a needed space, but would have so much more impact – on parents and educators – with a major editorial overhaul.

The Politics of Down Syndrome by Kieron Smith

[Originally posted on December 8, 2011 here]

The Politics of Down Syndrome by Kieron Smith

This book arrived in my mailbox right on the heels of my recent post about prenatal screenings and Down syndrome (which was picked up by Yahoo! Voices here), and it is right in line with my own views about prenatal screenings that have evolved over the last three years since Finn was born.

I was originally notified about this book by George Estreich, author of The Shape of the Eye. Subsequently, Kieron Smith sent me a copy of his book to read and review, and it really resonated with me. I began reading it, and then quickly realized that there was so much the author had to say that I wanted to remember, so I started over, going through it with a yellow highlighter.

Like The Shape of the Eye, The Politics of Down Syndrome examines how Down syndrome has been treated by the medical profession and society historically, and how our attitudes today are still very much shaped by old prejudices and outdated ideas about Down syndrome. While the author has a young daughter who has Down syndrome and he does say in the book that having her has definitely influenced his own evolving views, this is not a memoir. It’s more a sociological study. In it, he covers three main areas:

  • Prenatal screenings and how pregnant women are manipulated by a medical profession lacking in a genuine understanding of Down syndrome;
  • Education of children with Down syndrome; and
  • Inclusion and society’s views
His views also fall very much in line with Kathie Snow’s Disability is Natural – that is, that disability is a normal part of human diversity which should be embraced, and that inclusion in education and all aspects of life is what is called for for the betterment of not only people with disabilities, but for society as a whole.
The only criticism I have is that the book could use some serious editing; I noticed a lot of typos, poor punctuation, run-on sentences and incomplete sentences. I’d love to get a hold of the manuscript and give it a good overhaul! The content is excellent, but it needs a little polish.
At only 72 pages of text, it’s a quick read, but this slim little book contains some very important stuff. While it focuses on the state of things in the UK (where the author resides), most of it can definitely be applied to the U.S. I was actually a little surprised to discover that things over there seem to be very similar to things over here as far as the issues covered in the book.
A must read for parents, expectant parents, educators, and medical professionals.
I have an extra copy to give away – leave a comment if you would like it.