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.

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Writing With Grace by Judy McFarlane

20763909 Writing with Grace: A Journey Beyond Down Syndrome

by Judy McFarlane

In 2006, Judy McFarlane, an aspiring writer herself, was asked by a friend if she would help a young woman with Down syndrome write a book.  “I always dream to be a famous writer,” twenty-three year old Grace Chen had written in her notebook.

When Grace was born in Taiwan and the family learned that she had Down syndrome, Grace’s grandfather advised Grace’s parents to put her away in an institution and forget about her.  Instead, Grace’s father said to his wife, “Now we have to think how to help this child.”  Eventually, they decided to emigrate to Canada to make a new life for themselves.

When McFarlane is introduced to Grace, she has big reservations.  She’s always had aspirations to write herself, but instead pursued a career as a lawyer, and then stopped working to raise three children born in quick succession.  Now her children were grown, and that old desire to write – to be a writer – was pulling at her again.  Unsure of her own abilities as a writer, she was ambivalent about helping someone else write.  But her reservations went deeper than that, and that is what underpins this story.  It’s the story of how Judy McFarlane, middle-aged former attorney, aspiring but unsure writer, spent several months helping a young woman with Down syndrome write a book.  More than that, though, it’s a pretty courageous and unflinching look at her own prejudices, fears, and preconceived ideas about Down syndrome and disability, and that’s what makes this book unique in the Down syndrome literary landscape: the perspective from which the story arises and is told.  It’s not so much the story about a young woman with Down syndrome, but one about an older, educated, accomplished woman who confronts head on her own feelings and ideas about disability and Down syndrome.

Over the months of sitting down with Grace to help her write her book, McFarlane develops a growing fondnessOLYMPUS DIGITAL CAMERA for Grace that doesn’t feel condescending, as well as a friendship with Grace’s parents.  Her growing interest in learning more about Down syndrome leads her to meet and talk to other adults with Down syndrome and their families.  She also confronts memories of a girl from her childhood who had Down syndrome and was bullied while young McFarlane stood by.

I really enjoyed this book, and I think its unique perspective, thorough research, and engaging writing make it an important addition to anyone’s Down syndrome/disability book shelf.

For a look at Grace’s book – a modern take on the traditional Cinderella story, check it out on Amazon: Cinderella-Grace Vancouver Princess

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.

The North Side of Down by Nancy Bailey and Amanda Bailey

Unknown The North Side of Down: A True Story of Two Sisters

by Nancy Bailey and Amanda Bailey

Memoirs written by parents about raising children with Down syndrome are not hard to come by.  This memoir offers a unique perspective, as it’s written by a sibling rather than a parent, and it centers around an adult with Down syndrome rather than the usual stories about babies and kids with Down syndrome.

At the heart of the story is the relationship between two sisters: Nancy and Amanda.  Amanda, a forty-year old woman with Down syndrome, is the youngest of eight children.  Among the siblings, she is closest to Nancy, eight years her senior.  From the time Amanda was brought home from the hospital with the announcement from their father, “Your new sister is a Mongoloid,” Nancy has doted on Amanda.  By  the time Amanda is in grade school, most of the other siblings have left home, and their mother, suffering from chronic depression, casts Nancy in the role of Amanda’s main caregiver and playmate.

The North Side of Down covers a period of a couple of (recent) years when all of the siblings are adults, and their aging parents suffer severe medical setbacks that necessitate the adult children to step in.  First their mother dies, and within a couple of years their father, Amanda’s legal guardian, also dies.  In the midst of heart wrenching grief, old wounds between the siblings are brought to the surface, battle lines are drawn, and a custody battle over Amanda ensues.  Sadly, fighting over custody of this intelligent, funny, sarcastic woman with an intellectual disability and health issues of her own appears to have less to do with love than with power struggles within a very dysfunctional family.  In many ways Nancy would seem to be the best choice for Amanda’s guardian – they have the closest relationship, and more than the other siblings, Nancy seems to understand Amanda and have her best interests at heart.  Unfortunately, Nancy is in the midst of bankruptcy and, as a dog trainer and struggling artist, doesn’t have the financial means to be Amanda’s guardian, so she must pit herself against her family and try to fight for the best achievable arrangement for Amanda.

While this memoir doesn’t center around Down syndrome, it does offer insight into what can happen in a family when guardianship issues concerning an adult with disabilities are not properly dealt with before it’s too late.  It also offers insight into the dynamics of a severely dysfunctional family, which, sadly, too many of us can relate to.

This is a self-published book, and I would love to see it get picked up by a publisher.  Although it would benefit from professional editing, Nancy is a talented writer, and Amanda’s contributions bring the story more to life.  A story with real heart; I definitely recommend it.

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.

 

 

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.]

Me Before You by Jojo Moyes

[Originally posted on June 30, 2014 here]

15507958 Me Before You: A Novel
by Jojo Moyes

Louisa Clark – “Lou” to her friends and family – is twenty-seven and going nowhere fast. She still lives with her parents in their cramped little house, along with her grandfather, her brilliant younger sister and nephew. Lou has just lost her comfortable job at the cafe where she’s worked for the last seven years. Her family depends on her meager income to help make ends meet. After a string of temp jobs, Lou grudgingly accepts a six-month contract to work as a companion/caregiver for a quadriplegic.

Will Traynor has lived a big, adventurous, ambitious life. He’s traveled all over the world, climbed mountains, jumped out of planes, and made a fortune in the cutthroat industry of business acquisitions. At thirty-three, his life takes a devastating turn when he is crossing a street and is hit by a motorcycle. Permanently paralyzed from the chest down, he is wheelchair bound and requires round-the-clock care. Stripped of his ability to feed himself, dress himself, or even make the most mundane of choices for himself, and plagued by repeated infections and health problems related to his condition, Will does not see any point in going on with his life.

When Will’s and Lou’s lives intersect, they are both changed in profound ways. The genesis of their relationship is full of tension and resentment, and Lou has serious misgivings about being able to fulfill the six-month contract she agreed to with this angry charge who hurls abuse at her. Before long, however, her father loses his job, and she is the sole breadwinner supporting a family of six, so quitting is out of the question. Over time, Lou and Will become more comfortable with one another, and a friendship develops. When Lou learns by accident of Will’s ultimate plan and why she was hired on a six-month contract, she becomes determined to turn things around for Will. In her quest to save Will, Will saves her.

This is a love story. I’m not particularly a fan of love stories – or, I guess more accurately, of romance novels – but this story shook me. This is not a story of bodice-ripping damsels in distress, or muscular, square-jawed men who come to the rescue. This is a deep and profound story about love and loss, about living on one’s own terms, about finding untapped inner strength, and about loving another person enough to let go.

Me Before You forces the reader to explore some uncomfortable questions about living and dying, about who gets to decide if a life is worth living. Moyes has brilliantly cast a quadriplegic man who feels he has nothing to live for as a hero, and the relationship that develops between Lou and Will is so natural, so believable, you would almost think that the author is pulling from personal experience (she’s not). Although the subject matter is heavy, the story is not morbid, and there are plenty of laugh-out-loud moments.

Read it. It’s excellent. And have a box of tissues handy. I know I won’t get this story out of my head for a while.

The Rosie Project by Graeme Simsion

[Originally posted on June 16, 2014 here]

9781476729091_p0_v10_s260x420 The Rosie Project: A Novel
by Graeme Simsion

Don Tillman is a genetics professor at an esteemed university in Melbourne, Australia. He’s rigid and deadpan, lacks social finesse, and his life is ruled by a whiteboard hung in his orderly apartment. At thirty-nine years old, Don has decided that it makes sense to acquire a matrimonial partner, and perhaps reproduce. And so he embarks on The Wife Project, a process involving a detailed, multi-page questionnaire presented to potential mates which will screen out all unsuitable applicants: smokers, vegans, jewelry wearers, mathematical illiterates, and the list goes on. And on.

Enter Rosie: twenty-nine, disorganized, impulsive, sometime smoker, and bartender. Rosie shows up in Don’s office one day, and believing her to be a Wife Project applicant, he rules her out immediately as completely and totally unsuitable. However, her quest to find out who her biological father is intrigues Don, and together Don and Rosie embark on The Father Project. Don’s ordered life is turned upside down by Rosie, and, well . . . it’s not hard to see where this is going. Eventually, a new project emerges: The Rosie Project, as Don realizes that he’s in love with Rosie and tries to win her over by attempting to break out of the rigid mold he’s encased himself in.

The story includes a lively supporting cast, including Gene and Claudia, husband and wife psychologists who have an open marriage, who are Don’s only two friends. Gene is on his own quest: to have sex with a woman from as many countries in the world as possible. It is Gene who sends Rosie to Don’s office that fateful day, as a “wild card” for Don’s search for a suitable mate.

It’s obvious from the get-go that Don has Asperger’s syndrome (and he doesn’t realize it), and I have to confess that I had mixed feelings about it throughout the book. Because the story is meant to be a comedy, I couldn’t be sure that on some level Asperger’s wasn’t being exploited or poked fun of, and that made me uncomfortable. Don is an immensely likeable guy despite his social ineptitude and many quirks, and he’s definitely cast as the hero of the story. Still, I’m not sure if there is some sort of statement buried in the story illustrating our societal desire to fix anyone who doesn’t fit neatly within social constructs, or if it’s more of a statement about all of our foibles as human beings, Asperger’s or not.

I chose this book on recommendations from a couple of friends when I was trying to decide which book to choose for my book club this month. Although it’s apparently a bestseller, I had not heard of it before the recommendations. It’s probably not a book I would have otherwise chosen, as my tastes lean more towards drama and adversity. That said, I enjoyed it very much. It’s a quick-paced, light and entertaining read, and there were parts that literally had me laughing out loud. There’s a little bit of intrigue and suspense as Don goes to wild lengths to figure out Rosie’s paternity (the guess I made early on was right on, so it’s probably not difficult for the reader to figure out). It’s a pretty formulaic romantic comedy (can we please stop saying “rom-com”? Seriously.), and in fact was originally written as a screenplay. It has been optioned by Sony for the big screen.

Know the Night by Maria Mutch

[Originally posted on June 9, 2014 here]

6a017ee3e1169b970d019b01ad2318970d-300wi Know the Night: A Memoir of Survival in the Small Hours
by Maria Mutch

This debut memoir is Mutch’s account of a two-year period during which her oldest son Gabriel, from age eleven to thirteen, didn’t sleep much, and as a result, neither did she.

This book stands apart from other parental memoirs of disability on many fronts. Far from being a hand-wringing rant, or even a tale of coming to terms, Know the Night is deeply contemplative, and reading it felt a little like being allowed into a quiet, private chamber. During the chronic night wakings, as she staggered through days of mind-numbing sleep deprivation, Mutch became intimately acquainted not only with her son, but with the night itself, in all it’s vastness and mystery.

“I tend to think that if he spoke, the night, too, would be different. The spell broken. Night would seem cold and clean and beautiful again. I have stood on the lawn in November wearing five layers of clothes to watch the Leonid meteor showers, or bathe my face in moonlight, or simply to see how immense the sky is and experience that twinge of becoming tiny in its indifferent embrace as it twirls unstoppably. I’ve witnessed aurora borealis, too, when I was twenty-one and floating at night on an Ontario lake in a small rowboat. I slipped over the side to swim in black water, drifted on my back, the dark rim of pines seeming very close. Above me drifted the smudged galaxy, and Leo, Hercules, and Cassiopeia. I floated there, felt myself being erased in the lake’s black ink. And there it was, a brilliant green rolling over the Earth’s magnetic arc, one stream after another. And along with it, a physical presence, a silence, enveloping and dark and honed.”

Born with Down syndrome and later diagnosed with autism, Gabriel began developing a vocabulary as a toddler, but had lost all of his speech by the age of six. During those sleepless nights, Mutch pondered Gabriel’s absence of speech and discovered that there are many languages that are not verbally spoken, that communication comes in surprising forms, including silence, which she observes not only in her son, but in the story of Thelonious Monk being detained by police in the 1950s, and in the frozen desolation of Antarctica.

Jazz and the Antarctic both play major roles in Mutch’s memoir. Jazz is a refuge for Gabriel, and a language he understands and loses himself in. Mutch, clearly a knowledgeable fan herself, plays jazz for Gabriel at home, and they are such regulars at local jazz clubs that several of Gabe’s birthday parties are held in one or another.

Interspersed with Mutch’s recollections of their sleepless nights and her contemplation of jazz is also the story of Admiral Richard Byrd‘s expedition to Antarctica in the 1930s. Mutch read Byrd’s account of his expedition, which included five months of utter solitude living in a hut and barely escaping with his life, during the period of Gabriel’s sleeplessness. Byrd’s isolation and harrowing polar survival struck a chord with Mutch as she navigated nights of isolation and harrowing survival of a different kind; it’s an interesting parallel and juxtaposition.

In the end, this memoir lacks the usual heart wrenching, tear-jerking, and even soapbox-stomping which makes it stand apart. Although there is a patina of melancholy, her telling of “survival in the small hours” during Gabriel’s prolonged period of wakefulness reads like a meditative odyssey in search of a deeper understanding of her son.

Her prose is gorgeous and begs to be savored. As I read, I folded down the corners of many pages because there were so many passages I wanted to reread just to let the words roll over me.