The Girl In the Spider’s Web by David Lagercrantz

girlinthespidersweb The Girl in the Spider’s Web: A Lisbeth Salander novel

by David Lagercrantz

At the heart of the story is an eight-year old autistic boy, the son of a genius scientist who specializes in artificial intelligence, who is the only witness to the brutal murder of his father.  The bad guys who killed Frans Balder, the boy’s father, realize too late that although young August is non-verbal and appears to be severely intellectually disabled, he is actually a savant who is perfectly capable of identifying his father’s murderer.  And so the rest of the story centers around the bad guys’ efforts to do away with the boy, and Lisbeth Salander’s efforts to protect him.

On a side note, I have to comment on August Balder – or rather, the utilizing of a disabled character in fiction writing.  It’s become so commonplace that it almost feels cheap to me.  Here we have a disabled boy (who of course is actually brilliant, because a truly intellectually disabled character wouldn’t do – what possible value could such a character bring to a story except to elicit pity?), who, although he resides squarely at the center of the story, is nonetheless one-dimensional and stereotypical.  We never actually get to know August, nor are we given an opportunity to care about him beyond the fact that men are trying to kill him.  His character – and his disability – are merely convenient vehicles for a particular plotline.  I just wish that authors could do better.  Sadly, this is merely a reflection of society’s persistent views of people with disabilities: the disabled remain on the fringes.  Even when they occupy positions central to a novel, they are rarely fleshed-out, whole people in their own right.

Read the rest of my review here.

Freak the Mighty by Rodman Philbrick

71q9tVDYznL Freak the Mighty

by Rodman Philbrick

I read this months ago, and only recently realized that I never got around to writing a review. So now a lot of the details have faded from memory, but here’s what I remember (and my impressions):

“I never had a brain until Freak came along ….”

So opens this short novel written for the pre-teen set. Max, unnaturally large for his age (to the point that people are scared of him) has been deemed stupid, slow, etc., etc. all his life, and is in the special ed class at school.  The summer before eighth grade, Kevin moves into the neighborhood, and everything changes.  Kevin, who has a rare form of dwarfism, and who happens to be a genius, recognizes in Max what nobody else has before: that he’s actually a worthwhile human being.  Oh, and he’s actually not stupid.  Together, they call themselves “Freak the Mighty,” and go forth having adventures and giving the finger to everyone who disses them.

So, once again (see Out of My Mind and Wonder) we have a feel-good story for kids that purports to set forth a lesson in tolerance, compassion, diversity, and inclusion, but which fails because it denigrates intellectual disability.  It’s okay to be disabled, but it’s not okay to be intellectually disabled.  This is the message served up with lots of syrup to disguise it.  This message – this reiteration of the hierarchy of disability with intellectual disability at the very bottom – seems to be proliferate in children’s literature, which is, of course, merely a reflection of real life attitudes.

Sigh.

At its heart, this is a story about friendship and loyalty and discovering our own worth and believing in it.  Sadly, the other message kind of ruins it.

Fish in a Tree by Lynda Mullaly Hunt

41jSi7C+UcL._SY344_BO1,204,203,200_ Fish in a Tree

by Lynda Mullaly Hunt

This book was suggested to me by a commenter on my other blog when I began writing about my daughter’s dyslexia, which we only recently discovered that she has.

Fish in a Tree is a tween book, aimed at the 9 – 12-year old crowd.  Narrated by Ally, a sixth-grade girl who has attended seven schools in seven years, because her dad is in the army and the family moves a lot.  Ally has always been seen as a trouble maker at school – a girl who is defiant, goofs, off, and seems to prefer being sent to the principal’s office over staying in class and learning.  What nobody knows is that this behavior is merely a front.  More than anything, Ally wants to get along, she wants to be liked, and she wants to fit in – but she can’t read, and she’ll go to great lengths to keep that secret.

When her sixth-grade teacher goes out on maternity leave, the long-term sub comes in and shakes the class up with his enthusiasm and determination to see the best in every student – even Ally.  It doesn’t take long for Mr. Daniels to figure out what’s really going on with Ally, and he takes matters into his own hands, determined to address her dyslexia and show her that not only can she learn to read, but that she’s smart and gifted in her own way.

A little ableist, a little contrived, but still an enjoyable story.  It’s very much a teacher-as-hero story, and while it is a feel good story (and written for a certain young age group), it saddened me that real life school doesn’t often resemble anything close to what was portrayed in the story.  The hero teacher seems to be an endangered species, as the pressure increases to fit kids into neat little boxes, and to squeeze the best test scores out of them.  Also, shockingly, dyslexia is rarely “recognized” by public schools, even though it is the most common learning disability.  Because most schools and school districts do not officially “recognize” dyslexia, although they may recognize reading troubles and offer reading tutoring, most schools do not offer intervention that addresses the very specific needs of a child with dyslexia.  This leaves a lot of kids up the creek.  They either fall through the cracks (as was happening to my daughter before I began homeschooling her a year ago – and I didn’t even figure out that she has dyslexia until recently), or their parents are forced to spend big bucks for private tutoring by dyslexia specialists.  California just passed a law mandating that California public schools recognize dyslexia and offer services for dyslexic students the other day!  It’s 2015, folks.  And it won’t even go into effect for a year or two.

Anyhoodle!

So, yeah.  Enjoyable book, but probably doesn’t reflect real life all that well.  It does have a few tear-jerker moments, and the underlying message of “Great minds do not think alike” is a good one for kids.  I’d love to have my daughter read this, but it’s probably a year or two above her reading level.  We’re working on it though!  (Her reading, that is.)

The Rosie Effect by Graeme Simsion

{62082799-D96C-4CE1-9E8E-72DB51CB811E}Img400The Rosie Effect: A Novel

by Graeme Simsion

The Rosie Effect is the sequel to last year’s bestseller, The Rosie Project, which I reviewed here.  In this installment, Don Tillman and Rosie are newlyweds.  As the novel opens, Rosie announces that she is pregnant.  Which totally throws Don for a loop because it wasn’t part of The Plan, at least not yet.  Apparently Rosie decided to throw caution to the wind and get pregnant without telling Don her intentions.  Probably not a great thing to do to someone who thrives on rigid structure – plus, Rosie is in the middle of writing her thesis, and frankly, the timing of a pregnancy just in the midst of that seems  … er, ill-conceived.  It was hard to even understand why Rosie would decide to get pregnant at that particular time; even though she’s disorganized and somewhat fly-by-the-seat-of-her-pants, she’s utterly committed to her studies and her goal to become a doctor, and refuses to even consider deferring her studies.  But I guess a surprise pregnancy was the necessary vehicle to keep the Don and Rosie story going.

As he attempts to come to terms with Rosie’s pregnancy and impending fatherhood, to which he is convinced that he is more and more unsuited, Don’s life becomes borderline slapstick.  Meanwhile, Rosie is a cranky meany-pants, and their new marriage is crumbling, and fast.  Can Don turn things around?  Well, you can probably guess.

I had very mixed feelings about this book.  Don is likeable, though Rosie, not so much.  The comedy was a little much – it made the story hard to buy into.  And the discomfort I felt with The Rosie Project with regard to how autism and Asperger’s are handled, and how that reflects on society’s views on disability, was felt even more keenly.  In this story, there is a definite defensiveness about any suggestion of Don being autistic, and that felt very ableist.

It’s a readable story, and if you’re dying to know what happened after the wedding, go ahead and read this.  I found it to be rather disappointing.

The Pleasure of My Company by Steve Martin

413NZHCSZKL The Pleasure of My Company

by Steve Martin

I first read this novel several years ago.  I remember enjoying it immensely, and I remember it being about a guy with Autism – perhaps Asperger’s, although at the time I didn’t yet have a child with a disability and wasn’t yet very informed at all about disability or autism (I can’t say that I am now knowledgeable about autism, but perhaps more so than I was back then, if only by virtue of association with parents of autistic kids and one or two autistic adults).

In any case, as it turns out, upon re-reading The Pleasure of My Company a couple of weeks ago, I discovered that it’s not about a guy with autism, but rather, it’s about a guy with OCD.

Daniel Pecan Cambridge, in his early to mid-thirties, lives in an apartment in scenic Santa Monica.  He’s pretty disabled by his obsessive compulsive disorder (and for anyone who casually throws around the term “OCD” to describe any structured or high-strung behavior, you should know that OCD is an actual disorder, and it’s offensive to use the term flippantly or derogatorily, and you probably should stop doing it).  He can’t step off of curbs; he can only cross streets at driveways that are directly across from another driveway.  All of the burning lightbulbs in his apartment must add up to exactly 1125 watts at all times.  He becomes incapacitated by anxiety if faced with anything that deviates from the structured rituals he has created for himself.  Because of the severity of his compulsions and anxiety, he doesn’t drive and can’t work, so is on disability, and is visited once a week by a student shrink.

Despite his quirks, Daniel is charming and funny.  He’s also sensitive and lonely, and his vulnerability makes him very endearing.  He fancies himself in love with a middle-aged realtor who hawks apartments across the street; they’ve never actually met, but he is pretty sure that she won’t be able to help but fall for him once they meet face to face.  An actress who lives in his complex is a regular at his apartment and Daniel manages to act as her surrogate therapist; her boyfriend, the big galumph, turns out to be a very good friend to Daniel, indeed (sniff sniff).  And then his relationship with the student shrink takes an unexpected turn … well, I won’t spoil it.

Though neither autism or Asperger’s is ever mentioned in the book, nor in any descriptions of the book that I could find online, it does seem like Daniel does have some autistic traits – but what do I know?  I wonder what the author’s intent was in that regard.

In any case, Steve Martin (yes, THE Steve Martin – actor, comedian, banjo player extraordinaire) is a gifted writer.  I’ve read all of his novels and enjoyed them all.  In this novel, he creates a believable, likeable character with a disability that, in the end, doesn’t disable him, and enriches the lives of those around him.

A real treat.

The Last Picture Show by Larry McMurtry

cvr9780684853864_9780684853864_hr The Last Picture Show

by Larry McMurtry

Although this iconic novel by Larry McMurtry is not about disability, it does feature a prominent character with a disability.  I am always interested in how disability is treated in the various genres of literature.

In this fictional novel (although it’s apparently semi-autibiographical) set in a small town in 1950s Texas, Billy is an intellectually disabled teen.  His mother, a “deaf-mute,” died in childbirth, and Billy was virtually abandoned by his father, so Sam the Lion, an older man who owns the town’s pool hall, movie theater, and cafe, and whose own three sons and wife are dead, takes Billy in.

Billy’s disability is never specified, except that it’s clear that he’s intellectually disabled.  He is regularly referred to as an “idiot” (seriously, people, if you really think that the insult “idiot” is any different from “retard,” you need only go back about twenty or thirty years to see that it was the word used to describe what we now call “intellectually disabled”), and at one point, “returded.”  I wondered throughout the book if he might have Down syndrome, only because it seemed that the fact that he was intellectually disabled was recognizable by sight alone.  However, the term “Mongoloid,” the common word used to describe Down syndrome specifically in that time period, does not appear anywhere in the story, and in any case, McMurtry never specifies what Billy’s condition is.

What I found interesting is that Billy found a makeshift family in the townspeople.  Most of the townspeople are fond and somewhat protective of him.  At one point, some local boys take him to a prostitute to lose his virginity, and that was a disturbing in that it felt horribly like Billy was being exploited and mistreated, but for the most part, he is accepted by the town as one of their own, and he is treated with equal measures of deference and, yes, pity.  It would have been almost a given during that particular era for a child like Billy to be institutionalized; the fact that he wasn’t, that he was taken in and cared for, was surprising to me.

The Last Picture Show is a book worth reading, for the story itself and for the disability angle.  You can read my full review here.

The Memory Keeper’s Daughter by Kim Edwards

Memory_Keepers_Daughter The Memory Keeper’s Daughter: A Novel

by Kim Edwards

It’s hard to believe that this novel was originally published ten years ago already.  The first time I read it was in 2006 or 2007 – I can’t remember which, but I was pregnant at the time with my sixth baby who, unbeknownst to me at the time, would be born in the summer of 2008 with Down syndrome.  I’ve wanted to reread it ever since Finn was born, wondering how my take on the story might be changed by my own personal experiences.

The Memory Keeper’s Daughter, which has become somewhat of a staple on the bookshelves of parents of children with Down syndrome, is a profound story of loss and regret.  The story centers around a lie, one told with the best of intentions, but which reverberates through the years in ways never imagined by the person who utters the lie.

The story opens as snow begins to fall on a March evening in 1964 in Lexington, Kentucky.  Norah Henry, only twenty-two and still a newlywed, young, beautiful, and trusting, goes into labor three weeks early on this night.  It is her first child with her handsome doctor husband, David.  As the young couple realizes that their baby is determined to be born this night, the falling snow grows into a full-fledged storm, and they make their way across town on treacherous roads to the clinic at which David works, knowing they won’t make it to the hospital in this weather.  When they reach the clinic, David’s nurse is waiting, and she delivers the startling news that the doctor who was supposed to meet them there to deliver the baby went off the road into a ditch in the storm.  David must deliver his own child.

The birth goes smoothly, with the nurse administering gas to Norah through the worst of it, which renders her mostly unaware of the events unfolding at the foot of the delivery table.  A healthy boy.  But then, David realizes that there is another baby, and soon that baby also slips out into his hands.  They didn’t even know that they were expecting twins.  David immediately recognizes that the second baby, a girl, has Down syndrome.  He makes a split-second decision that will set in motion a future he cannot foresee in that moment: as his wife lies on the table unconscious, he hands the baby girl to the nurse and instructs her to take the infant to a home for the feeble-minded.  When his wife regains consciousness, he utters the lie that forms the basis for the rest of the story: he tells his wife that she gave birth to twins, but that the second baby died before drawing her first breath.

Now, I have trouble with this part, because no matter how I turn it over in my mind, I can’t understand why he even bothered telling his wife that she gave birth to a second baby.  She was essentially unconscious during the birth and had no memory of it; it seems that he only complicated matters by telling her about the second baby at all.  However, this is a story, and this lie was necessary in order for the rest of the story to happen.

So.  Norah grieves for this daughter she neither knew she was carrying, nor ever saw or held.  I don’t doubt that there would nevertheless be a profound grief, but it would seem that it would be based largely in shock at finding out one gave birth to a baby one didn’t even know one was carrying.  But, I digress.

Caroline, the nurse to whom David handed his newborn daughter with instructions to take her away, does go to the institution with the infant, Phoebe, and finds it to be a terrible place.  She can’t bring herself to leave the baby there, and impulsively leaves the home and takes the baby with her.  Not knowing exactly what she’ll do, she takes the baby home with vague some expectation that David will come to his senses and do the right thing and claim the baby.  However, when she sees a notice in the paper a few days later announcing a memorial service for Phoebe Henry, stillborn daughter of Dr. David Henry and his wife Norah, she understands what David has done, and she leaves town with Phoebe to start a new life elsewhere, raising Phoebe as her own.

The novel spans a quarter of a century, alternating between the Henry family’s lives in Lexington, and Caroline’s life with Phoebe in Pittsburgh.  After the death of their daughter, Norah never fully recovers; her daughter’s absence is a void inside her, and she draws more and more into herself as David, coping with guilt and regret, builds an invisible wall of distance between himself and not only his wife, but his son Paul, as well.  Paul grows up feeling the distance between his parents and the hole left by his dead twin sister, and tries to bury his rage in music.  The anguish in this family is palpable.

Meanwhile, miles away, Phoebe grows up with the only mother she knows, Caroline.  Fortunate to be free of most of the health problems associated with Down syndrome, Phoebe is healthy and well-loved.  Caroline fights for Phoebe to go to school and receive an education, and she willingly sacrifices her career and dreams, as mothers do, for her child.

Predictably, Norah eventually learns the truth: that her husband lied to her, that their daughter never really died, that she’s alive and well and living in Pittsburgh with Caroline Gill, the nurse who helped deliver her babies all those years ago.

Luminous and deeply affecting, Edwards spins this story with almost dreamlike prose.  The characters are so richly and vividly drawn, their feelings and thoughts so well revealed – it all just felt so real.  Parts of it I questioned, like David telling his wife about the second baby in the first place.  I also thought that when Norah does finally learn of her daughter’s existence, she doesn’t seem shocked or troubled at all to find out that she was born with Down syndrome – and I thought that unrealistic.  Although finding out a child you thought was dead is not actually dead would certainly trump finding out that child had Down syndrome, I still think that the Down syndrome piece would nevertheless be something to grapple with and come to terms with.

I appreciated that Edwards did not conjure up an ending that was neatly wrapped up.  There really is no happily ever after.  Once Norah and her son Paul learn of Phoebe’s existence, they try to forge a relationship with her, but it’s clearly fraught with awkwardness and uncertainty.  Edwards did a fabulous job, I thought, too, of portraying a person with Down syndrome and attitudes about Down syndrome and intellectual disability in line with the time periods of the story.

The tendency for those who read The Memory Keeper’s Daughter, I think, is to rail against David Henry, not only for lying to his wife, but for giving his daughter away at all.  The tendency, I think, is to believe that if only he hadn’t handed the baby over to Caroline and instructed her to take the baby away, all of this anguish and heartache would have been avoided.  One only need read Theresa Shea’s The Unfinished Child, however, to realize that the harsh truth is that chances are almost certain that Norah would have also sent her baby away had she known of its live birth and chromosomal makeup.  That’s generally what was done up until only twenty or thirty years ago.  Shea paints a stark and utterly realistic picture of what generally happened when women gave birth to babies with Down syndrome back then: they sent them to institutions because they were advised to and because there really were no resources available to parents who actually wanted to raise their disabled children at home – and then they mourned them forevermore.  There were very few happy endings in those days; although Caroline throws convention to the wind and raises Phoebe herself, and does it well, she does it at great cost to herself and against great odds.

The Unfinished Child then brings us to the present day, and shows us how Down syndrome is viewed today; we have more choices now, but those choices have their own consequences.

I think The Memory Keeper’s Daughter and The Unfinished Child complement each other extremely well; if you read one, read the other.  They’re both excellent, illuminating stories.

Wonder by R.J. Palacio

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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.

 

 

Flowers For Algernon by Daniel Keyes

Unknown Flowers for Algernon
by Daniel Keyes

Originally published in 1959, this novel is the imagined story of a mentally retarded man not only gaining intelligence, but genius, by way of an operation.

The story is told in first person, in both diary and “Progress Report” format.  When we are first introduced to Charlie Gordon, he is a 32-year old man with the developmental and emotional status of a child.  He works as a janitor at a bakery and has worked hard to learn how to read and write at the Learning Center for Retarded Adults.  His diary entries and Progress Reports covering the first month or so of the story are extremely childish, and written phonetically.

Then Charlie has an operation, which is never elaborated upon.  The reader assumes it was some sort of brain surgery, although Charlie’s recovery is so swift that it lacks any realism.  But the story isn’t about brain surgery, it’s about the possibility of drastically altering intelligence, and what the repercussions might be.  As Charlie’s intelligence rises following the operation, his emotional maturity lags behind, and that’s the first pitfall.  As he becomes more intelligent, he becomes aware that the people he thought were his friends when he was “dumb” had actually been laughing at him and making him the butt of their jokes for years.  One of his greatest hopes in agreeing to be the subject of this experiment is that a higher IQ will make people like him more, and will gain him friends.  Eventually, however, his intelligence far surpasses that of everyone he knows, including the doctors directing the experiment, and he finds that he has just as few friends as he did before the operation.

As Charlie’s IQ ascends, childhood memories also come flooding back – of an abusive mother who couldn’t bear having a “moron” for a son, a father who couldn’t stand up to his wife, and of a family that ultimately washed its hands of him by dragging him from bed one night and committing him to the Warren State Home and Training School – a repository for the mentally retarded.

With greater intelligence also comes sexual awareness and desire, and much of the story is devoted to Charlie’s sexual awakening.  He falls in love with the woman who was his teacher at the Learning Center for Retarded Adults, and she reciprocates without much hesitation.  I found this relationship disturbing; although Charlie has virtually changed into a new and different person, Alice is fully aware of the experiment of which he is the subject, and moreover, she has been long acquainted with him as a man with an intellectual disability.  To me, it felt like what it might be like if a grown woman fell in love with and became sexually attracted to someone she had once babysat.  I mean, I know it happens, but  . . .

The first subject of this experiment is Algernon, a white lab mouse.  Charlie eventually runs off with Algernon and becomes quite attached to him.  When Algernon begins showing signs of regression, Charlie’s own fate seems clear.

All in all, I thought the story was so-so.  Although it’s clearly outdated, it does raise some valid concerns about the potential price of artificially raising the intelligence of people with developmental disabilities, especially now that we seem to be on the cusp of having drugs available for just such a purpose for people with Down syndrome.  The debate within the Down syndrome parenting community rages on, with one camp eager to give their children every opportunity for an independent life as possible, and the other camp insisting that they accept their children exactly as they are and remaining unwilling to entertain such intervention out of  certainty of a downside.  Me?  I guess I lean heavily towards the latter.

Out of My Mind by Sharon Draper

[Originally posted on July 10, 2014 here]

6609765 Out of My Mind
by Sharon Draper

Sigh.

After having numerous friends (mainly parents of children with disabilities) rave about this book, I read it with much anticipation. I kept waiting for it to grab me, but it never really did. It’s safe to assume that I’m in the minority in that I did not love this book.

Written for the preteen/adolescent set, it’s a fictional narrative by an eleven-year old girl by the name of Melody who is profoundly disabled by cerebral palsy.

“Words.

I’m surrounded by thousands of words. Maybe millions.

Cathedral. Mayonnaise. Pomegranate.

Mississippi. Neapolitan. Hippopotamus.

Silky. Terrifying. Iridescent.

Tickle. Sneeze. Wish. Worry.

Words have always swirled around me like snowflakes – each one delicate and different, each one melting untouched in my hands.

Deep within me, words pile up in huge drifts. Mountains of phrases and sentences and connected ideas. Clever expressions. Jokes. Love songs . . . .

I have never spoken one single word. I am almost eleven years old.”

Melody is wheelchair bound and not only can she not speak, she cannot feed herself or dress herself or bathe herself. She is unable to use the bathroom by herself. Most people assume because of her physical limitations and absence of speech that she must also have severe mental limitations, and she spends her days in a special ed classroom where a procession of teachers with low expectations parade in and out.

Melody is bored and frustrated. She wants to fit in. She wants to have friends. She wants to say what’s on her mind, but her words are all stuck inside her mind – until she acquires a speech device that finally allows her to express herself. It’s a dream come true – but will it change Melody’s life and people’s perceptions about her in the way she hopes?

I was tempted to call it a “feel good story” until about three-fourths of the way through. Though it’s written for kids in the 9 – 12 age group, I appreciated the fact that it’s not all wrapped up with a pretty bow at the end.

That said, there were several things that bother me about the story: most of the kids that populate the book are downright obnoxious, and it was difficult to like any of them. I suppose this was at least partly intentional on the author’s part in order to create a “Melody vs. The World” dichotomy. There is one girl who sort of befriends Melody, who is clearly conflicted, and she was probably the most likeable and believable character. It felt like the author was unsure of the era in which the story takes place – she has Wiis and iTunes existing alongside MySpace, which as far as I know has been dead for years. While not a major thing, it was a distraction. The kids used “hip” lingo that I’ve never heard (do kids really say, “That’s so tight!” or “That’s what’s up!“? Maybe I’m out of touch – or maybe it’s a geographical thing – none of my kids have ever used those phrases), so that felt unrealistic. The author does not seem to have a grasp of the difference between “inclusion” and “mainstreaming” in the realm of school, and nothing seems to be decided by way of IEPs. Also, aides for disabled students are really awesome and involved and attached, almost members of the family. Yeah, right. Not that there aren’t good aides out there, but I thought the author’s portrayal – especially of Melody’s aide – was a pretty major departure from reality.

Oh! And the classmate with Down syndrome! I’m convinced the author read something with a title like, “Stereotypical Down Syndrome Traits.” Always happy. Hugs indiscriminately. Possesses sixth sense about other people’s moods and emotions. Gag.

What bothered me most of all, however, was the same old valuing of people based on intelligence. Melody, you see, while profoundly physically disabled, is pretty much a genius. Even she says that she hates the word “retard.” I got the distinct feeling it wasn’t because she felt it was mean or derogatory or marginalizing, but rather because she’s not “retarded.” “She may be severely crippled, but at least she’s not retarded!” the author seemed to be saying. I’m so tired of this message – so tired of our society’s insistence on valuing people based on intelligence and potential to achieve, rather than on humanity.

There was also the fact that Melody’s parents, while loving, fierce advocates, seem to have no qualms about expressing – to Melody! – that, yeah, she’s defective, broken, messed up. When her mom is expecting another baby, everyone is worried that the new baby will also have CP. “We love you, Melody, but we sure hope and pray that this new baby isn’t screwed up like you,” they pretty much tell her.

It was frustrating and disheartening.

I can see the pluses of this book for the age group it’s intended for – by allowing kids a glimpse into the mind of a child with disabilities, it might serve to demystify disability to an extent and foster compassion. However, I feel that the positive impact it could have is mostly canceled out by the negative messages about disability. I’m not sure I would even recommend this book to my own kids, who have a sibling with a disability.

[Bracing myself for comments expressing outrage.]