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.

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.

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.

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.