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.

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 Anti-Romantic Child by Priscilla Gilman

[Originally posted on March 18, 2014 here]

9780061690273 The Anti-Romantic Child: A Story of Unexpected Joy
by Priscilla Gilman

Where to start?

I honestly can’t decide if I loved this book or disliked it. I suppose both.

In this memoir, Gilman tells of her idyllic childhood and the pain that was wrought by her parents’ split when she was ten. Always a pleaser, she spent much of the next couple of decades trying to fulfill the wishes and expectations placed on her by her family and teachers, pursuing a life of academia. Through it all, she pines for the romanticized version of her early childhood and longs to replicate it with children of her own.

When her first child is born, he is different from what she had expected from the beginning: he is “floppy” and not the cuddly child she had envisioned. In fact, he resists most forms of physical contact and in many ways appears an island. As Benj progresses into toddlerhood, he remains distant, he is clumsy and slow to meet gross motor milestones, and is plagued by inexplicable anxieties and tics. At the same time, he begins reading fluently by age two and shows a remarkable capacity for memorization, and an obsession with letters, numbers, and lining up and ordering things.

“Part of what made my dawning realizations about Benj so disconcerting and devastating was that I had thought I knew him so well. After the initial sense of alienation and despite my continued sense of a fundamental difference or distance between us, Benj, with all his quirks, had become utterly familiar to me. There had been no one more familiar to me than my son. I had considered myself totally tuned in to his needs and had accepted him on his own terms. In fact, I had embraced him for what he was, because I still wanted to be the devoted mother of the romantic child I’d imagined; even if (or especially because) the child didn’t match the ideal, my love for him would. But now I wondered: was this acceptance instead based on a ‘fond illusion of my heart’ (Wordsworth, ‘Peele Castle’)? Was it a kind of denial, a refusal to help or even accurately perceive him? To question your grasp of your child is to suffer a great loss.”

Every aspect of Gilman’s life is informed by the poetry of William Wordsworth, of which she is both a student and a professor, and her book is liberally peppered with Wordsworth poetry that acted as both knife and balm to her mother’s heart.

Around the age of two and a half, Benj’s issues become troubling enough that Gilman decides to begin the process of having him evaluated. Certain aspects of her story resonated so strongly with me with regard to my own child who has Down syndrome:

“Now, with the outside world’s judgments and prescriptions infecting our family, with the knowledge that we would have to have him formally evaluated in clinical settings, our peaceful happy private life, a life in which we – not teachers or doctors or therapists – defined his value and his identity, was gone. Benj was still his same sweet self, but my entire sense of him, of our family, of his and our future had changed.”

I could very much relate to that feeling of loss relating to allowing the sterile, clinical world intrude on our family to assess our child and break him down into scores and numbers and deficiencies.

Benj is diagnosed with hyperlexia (which is like the opposite of dyslexia) and a myriad of delays, sensory issues, and obsessive-compulsivity, and so begins his entrance into special schooling and intensive therapies. Indeed, nearly their entire lives seem to be taken up with various therapies for young Benj. Meanwhile, Gilman leaves academia behind and her fairy-tale marriage breaks up, due in large part to a polarization in her and her husband’s feelings about their son’s issues.

Gilman’s prose is beautiful and from the heart; she is a gifted writer and tells her story vividly. I think what I found frustrating – as a parent of a child with special needs myself – was what I perceive as a juxtaposition, or maybe just waffling, between Gilman’s determination to accept her son and value him exactly as he is, rejecting notions of achievement-based valuing of human beings, and a strong sense of ableism and very much wanting to normalize Benj as much as possible, by relentlessly plunging him into therapy after therapy aimed at changing him. Perhaps, however, her summing up of her feelings explains it best:

“Wordsworth has strengthened my commitment to simultaneously helping Benj integrate into society and honoring his differences. Our therapeutic efforts have been, of course, designed to help Benj be more ‘romantic’: more spontaneous, imaginative, intrepid, playful, connected to others. But even while striving so hard to help Benj become more romantic, I always wanted to remember that Benj’s antiromantic traits are valuable and wonderful and an essential part of who he is. They are strengths and gifts. I never want them denigrated or dismissed as ‘splinter skills.’ Both my reading of Wordsworth and my experience with Benj have taught me the danger of the very idea of ‘normalcy.’ I will always resist mightily any orientation or approach that sees Benj as a problem or somehow ‘broken’ rather than as simply and profoundly himself.”

It was perplexing to me that her son never received a formal diagnosis; so much of what she describes seems like autism, but that may admittedly be my own misconceptions and assumptions. I wondered if it was a form of denial on her part, or a manifestation of the ableism I perceived in her. And yet, she explains very eloquently,

“Despite numerous evaluations over the past seven years by developmental pediatricians, psychologists, speech and language therapists, occupational therapists, and psychiatrists, Benj has never received an official label or diagnosis. He clearly has shades of obsessive-compulsive disorder, and could be grouped under the headings of sensory-integration disorder and social-pragmatic language disorder; now, as he gets older, I often describe him as ‘borderline Asperger’s,’ usually as a kind of shorthand when I need to succinctly explain why he’s in a special school. I’ve always been ambivalent about the idea of labels. They’re undeniably useful for securing the much-needed therapies and special services, but I’ve often wondered how a label would be helpful in understanding Benj. Would a label make people more sympathetic to him? Or would it get in the way of appreciating the complex, intricate person Benj is? How much detail, nuance, subtlety do we lose when we slap labels on people, and especially on still-developing kids? Reducing Benj to a label would me the loss of mystery, romance, respect for the idea of identity as something that can never be precisely defined of fully known or mastered.”

But there are children like my own who are born with a recognizable, inescapable diagnosis or label; and so, while I fully appreciate Gilman’s hesitancy at using labels, I can’t help but also recoil a bit at her feeling that labels are reductive. In reality, sometimes they can’t be avoided, for all of their pitfalls.

This is a very different sort of memoir that I’ve read before, generally and pertaining to having a child with special needs, in large part because it is so heavily informed by the author’s passion for literature. Despite my misgivings, it has definitely given me pause to consider how other parents approach disability.

Three Generations, No Imbeciles by Paul A. Lombardo

[Originally posted on December 29, 2013 here]

Three-Generations-No-Imbeciles-Lombardo-Paul-A-9780801890109Three Generations, No Imbeciles: Eugenics, the Supreme Court, and Buck v. Bell

by Paul A. Lombardo

The United States has a long history of shameful behavior behind the legacy of patriotic heroism, bravery, innovation, and resilience. Our forefathers stole land from the natives who were here before us, spread disease, enslaved hundreds of thousands of people, and well into modern times have continued to marginalize and mistreat minorities. One of the chapters in U.S. History that is not taught in school is the eugenics movement which took hold in the early twentieth century.

Eugenics – or “better breeding” – was a social movement rooted in quasi-scientific theories about heredity. It was believed – though never actually proven by any stringent scientific methods – that individuals with undesirable traits, including, most notably, epilepsy, alcoholism, “pauperism,” (those living in poverty), criminal tendencies, and “feeblemindedness” were born with those traits by way of genetics, and that they would pass those traits onto their offspring. The only way to prevent the world being overrun by these “lesser breeds” was to prevent them from reproducing via forced sterilization.

“Anxiety about those who failed in the contest of life, relying on charity and inflating the taxes of everyone else, was widespread.”

(Things haven’t changed much, have they? Just listen to anyone in today’s Republican party and you’ll hear much the same.)

“Degeneracy theory gave a human face to the biblical curse condemning children to inherit the sins of their fathers.”

Forced sterilizations – the vast majority of which were performed on women – began in the late nineteenth century on people institutionalized, either in prisons or in mental hospitals. In order to give it legal clout in the face of public disapproval, a test case was chosen in 1923 to go all the way to the U.S. Supreme Court. The case was Buck v. Bell, and the plaintiff was Carrie Buck, a young unwed mother who was deemed “feebleminded,” as was her own mother who resided in a state institution, and her infant daughter.

“Feeblemindedness” was a very vague term, encompassing a vast array of “conditions,” including, but not limited to illiteracy, low IQ (determined by very unsophisticated and untested tests), wanderlust, immoral behavior (like becoming pregnant out of wedlock – nevermind that Carrie Buck became pregnant as a result of being raped by her foster parents’ nephew), and “shiftlessness.” Upon learning that Carrie was pregnant, her foster parents did what many did in those days to distance themselves from the shame of an unwed pregnancy in the household: they had her sent away and committed. Torn away from her baby only a couple of months after giving birth, Carrie was committed to the same institution where her natural mother resided – for reasons unknown – and both they and the infant girl were deemed “feebleminded.” Carrie’s surgical sterilization was planned to take place on the heels of her case which would go to the Supreme Court, which the doctors and lawyers orchestrating had every intention of winning – to the point of assigning an attorney to represent Carrie who did nothing to defend her rights and merely bolstered the State’s sham of a case.

In the famous Supreme Court decision, Justice Oliver Wendell Holmes, Jr. wrote,

“It is better for all the world if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind . . . Three generations of imbeciles is enough.”

Carrie Buck was in fact forcibly surgically sterilized after the case was decided, as was her thirteen-year old younger sister, and thousands upon thousands of more people over the next several decades, with California leading in the number of sterilizations performed. Carrie was eventually released from state custody and lived to be an old woman, dying in 1983, having been married twice and living most of her life in abject poverty. People who knew her later in life scoffed at the notion that she was “feebleminded.” She was, in fact, of average intelligence. The daughter she gave birth to illegitimately was adopted by Carrie’s foster parents and died of an illness at the age of eight or nine, after doing well enough in school, both academically and in her “deportment,” despite having been deemed “feebleminded” as an infant.

The U.S. eugenics movement fueled Nazi Germany’s quest for racial cleansing,

“But neither scientists nor the public connected U.S. laws to German atrocities. Fifty years after Buck, more than a dozen compulsory sterilization laws were still in force, and surgeries were documented in institutions as late as 1979. Far from being a legal dead letter, Buck has never been overturned.”

German scientists actually worked closely with American scientists in the development of their own eugenics movement, which of course was the foundation for the Holocaust. At the Nuremberg trials, Buck was referred to again and again in defense of the Nazi’s genocide.

It is hard to imagine in this day and age people being forcibly surgically sterilized for any of the reasons that were seen as completely justified and reasonable back in the day. And yet, despite astronomical leaps in scientific knowledge and supposedly progressive social views, minorities, people living in poverty, and people with disabilities are still marginalized and even targeted for elimination now. Knowing the history of eugenics in the U.S., it is impossible not to believe that modern-day prenatal screenings, designed specifically to target and weed out certain disabilities, is tied to eugenics.

“In the shadow of the Holocaust and in the light of Carrie Buck’s saga, eugenics is now almost universally considered a dirty word. But many of our motives today are no different from those of the Buck era: we continue to hope that science can be used to improve the human condition. We all want to eradicate disease; we all hope to have healthy children. We all also want lower taxes. Whether or not we use the word eugenics to describe those motives, we must recognize their power, both in historical context as well as today.”

“Today we can diagnose some forms of deafness, blindness, and cancer as well as numerous other diseases, where we know the genes that lead to disease and we can reliably predict its onset. The search for the cause of mental retardation has not abated since the time of Buck, and many genetic markers for cognitive impairments remain under study. How much does it matter if we use a technique – less troubling to some than coercive surgery – to “cleanse the germ plasm,” as the eugenicists would have said? Does our embrace of techniques such as preimplantation selection of “normal” fetuses or prenatal genetic diagnosis and selective abortion make our motives in “eradicating defects” less suspect? Our modern emphasis on autonomy as a principle important to both law and ethics does not free us from the hard questions posed by our newest technology.”

Three Generations, No Imbeciles is an unflinching look at a chapter in our history that still reverberates today. Utterly fascinating and ultimately unsettling, this should be required reading in every U.S. History classroom.

The Reason I Jump by Naoki Higashida

[Originally posted on November 11, 2013 here]

imagetemp13704 The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism
by Naoki Higashida

I first heard of this book when Jon Stewart had David Mitchell, a successful author in his own right and the man who translated this book from Japanese to English with the help of his wife, KA Yoshida, on his show several weeks ago. I was intrigued by Jon’s enthusiasm about the book, and although I do not have a child with autism, I do have a child with Down syndrome (which is very different from autism, to be sure), and enough friends with children with autism that my curiosity was piqued. Just being a parent of a child with a developmental disability, I think, makes me curious about other developmental disabilities.

My guess is that when reading this book, whether or not the reader has a close personal relationship with someone with autism probably influences the reader’s reception of the book. A blog I follow that is written by a parent of a child with autism reviewed this book and felt that it was like having a conversation with her son that she has longed for. I felt like I gained some insight into an autistic mind reading this book, but it didn’t blow me away. There have been criticisms of the book elsewhere, and speculation that Mitchell might have taken too much artistic license with his translation and that it might not actually be an authentic reflection of the original author’s thoughts. I have no opinion one way or the other as far as that goes – not having a personal connection to autism, I’m really not in a place to say whether or not this book authentically reflects an autistic mind.

It’s a quick read – I read it in a day. Originally written when Naoki Higashida was 13 (he’s now 21), it’s eloquent, humorous, both precocious and adolescent, and insightful. I was bothered by his constant use of “us autistic kids” and “we” – as if he were speaking for all autistic people. While I’m sure there are commonalities among people with autism, like any other group of people, each are unique; it would therefore be a mistake, I think, to assume that this boy’s experience of autism is the universal experience of autism. What stood out to me most was actually something my husband is fond of saying, and that is, “Everyone is coming from somewhere.” In that way, reading this book gave me pause about my five-year old son who has Down syndrome: even when I don’t understand him, even when he does things that confound me, he’s coming from somewhere.

Definitely worth reading, but I think opinions and perceptions of the book will vary pretty widely.

Where the Moon Isn’t by Nathan Filer

[Originally posted on October 7, 2013 here]

UnknownWhere the Moon Isn’t: A Novel
by Nathan Filer

I’ve been meaning to mention that Book Browse is a neat little site where you can read book reviews and keep track of your own reading list, if you’re so inclined. You can get limited access to the site for free, and for a $30/year membership fee you get access the entire site, which is actually pretty extensive, and includes a monthly newsletter with reviews, online book clubs/discussions, author interviews, and more. You also get access to the site’s feature, “First Impressions,” which is a program whereby they offer a limited number of advance copies of soon-to-be-released books for free (well, it’s included in the $30/yearly fee) in exchange for your agreement to read and write a short review on the site. I’ve received quite a few free advance copies of books this way.

So, recently, Where the Moon Isn’t was one of the books offered by Book Browse First Impressions. The description of a novel about two young boys who sneak out one night, but only one of them returns, intrigued me, so I requested and received it to read and review.

From the moment I opened this book, I could hardly put it down.

Matthew and Simon Homes are no ordinary boys. It is gradually revealed that Simon, the older of the two brothers, has Down syndrome. I had no idea when I requested this book that it featured a character with Down syndrome. The way it’s revealed is both matter-of-factly, but almost incidentally. As I began to realize that Simon had Down syndrome – before “Down syndrome” was ever uttered – I got chills as I recognized pieces of my own son, Finn, in him.

The younger of the two brothers, Matthew, narrates the story. It was his idea to convince his older brother, Simon, to sneak out of the caravan the family was vacationing in at Ocean Cove Holiday Park in their native England that fateful night. At the time, Matthew was nine, and Simon 12 – though Simon seemed the younger of the two. Something terrible happens as the boys are sneaking about in the caravan park that night, as their parents slept peacefully, unaware, and only Matthew returns to the caravan.

Now, ten years later, Matthew is still trying to come to terms with his brother’s death and his part in it . . . but now, Matthew is schizophrenic, and he hears Simon talking to him. A lot. Matthew thinks he can bring Simon back.

Told alternatingly between moments of lucidity and madness, this story is like no other story I’ve read. It’s both unflinching and compassionate, heartbreaking and funny, tender and tragic. My eyes burned from reading so late into the night (one night by lantern during a power outage), and by the end, I was laughing and crying.

I was so moved by this story – and it’s a debut novel. This guy can write! I won’t soon forget Matthew and Simon Homes.

This book will be released next month; put it on your wish list.

Note: this book is also sold under the tile The Shock of the Fall.

Sun Shine Down by Gillian Marchenko

[Originally posted on September 5, 2013 here]

Sun-Shine-Down-Cover-250-px Sun Shine Down: A Memoir
by Gillian Marchenko

“I know of other mothers who have children with disabilities, and right away they loved them and decided to fight for them. that isn’t my story.”

In this slim little gem of a memoir, Gillian Marchenko recounts the birth of her third daughter by emergency c-section in Ukraine – far away from her family in her native Michigan. Soon after her daughter’s traumatic birth, Gillian and her husband learn that not only is their new baby very ill, she also has Down syndrome – and this in a country where babies with Down syndrome are still routinely institutionalized from birth.

After leaving their missionary work in Ukraine and moving back to the states, Gillian struggles to come to terms with Polly’s diagnosis. Weighed down by depression, she turns to alcohol for escape and solace, all the while trying to keep up appearances as a good mother, and a pastor’s wife.

Stark and beautiful in its honesty, this is a very human story of a mother struggling to cope with a new reality, and ultimately of a baby who lights the way.

I’ve read a lot of Down syndrome memoirs, and this jewel rises to the top as one of the better ones.