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.

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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.

Far From the Tree by Andrew Solomon

[Originally posted on January 25, 2013 here]

far-from-the-tree-cover-223x339 Far From the Tree: Parents, Children and the Search for Identity
by Andrew Solomon

Where to start?

I was eager to devour this tome (702 pages, not including Acknowledgments, Notes, Bibliography, and Index) when it started generating buzz in the Down syndrome parenting community a couple of months ago. At its core, it’s a study of the relationships between parents and “alien” children – that is, children born with differences so fundamental as to make them seem alien to their parents. The chapters include such titles as “Autism,” “Schizophrenia,” “Down Syndrome,” “Rape,” and “Transgender” to name a few, bookended by the first and last chapters titled “Son,” and “Father,” recounting the author’s own “alien” identity as a homosexual and how that played out in his role as a son, and then as a father.

How do these families forge bonds? How do they cope with the challenges inherent in the differences that divide them? How do these children find their own identities when those identities can’t necessarily be passed down to them by their parents – and how do such parents nurture or squelch those identities? These are the questions examined at the heart of this book.

I was, of course, especially interested in the chapter on Down syndrome, and I wrote about it here: On Down Syndrome and Falling Far From the Tree. I won’t rehash what I had to say about except to say that it stirred up very mixed feelings for me. Here are a couple of other reviews by parents of children with Down syndrome, if you’re interested: Far From the Tree – I Finally Finished It by Alison Piepmeier; and “Far From the Tree” Review: Families On the Edge by George Estreich. The consensus seems to be that, while Solomon covers important ground on Down syndrome, he missed the boat on quite a bit.

And I wonder if the same can be said about any of his other subjects in the book. Overall, the book is sad and bleak. I read the chapter on Autism, for instance, with great interest, as I have a number of friends who have children who have been diagnosed with autism. To be perfectly frank, Solomon’s portrayal of autism is pretty horrifying, despite the fact that he wants to get the message across that these parents experience a love for their children that is at least, if not more, profound than parents of neurotypical children. I was left wondering, “Is this really how life looks behind closed doors for these people I know who have kids with autism?” Even more so, I wondered – and am still wondering – what those people I know would have to say about Solomon’s treatment of autism – would they dispute the picture he paints as we parents of kids with Ds have disputed his picture of Down syndrome?

In Cristina Nehring’s article, Loving a Child On the Fringe, in which she takes on Solomon’s book, and specifically his take on Down syndrome as the parent of a child with Ds herself, she lashes out at him for, in the end, seeking an “A-1” baby for himself, and for wrongly seeing himself as an “adversity survivor” when his child is born and needs a CAT-scan to investigate some apparent physical anomalies. I read Nehring’s article before I read Solomon’s book. Having now read the book, I think Nehring exaggerated; although Solomon and his husband do go through the usual process of sifting through donor profiles once they’ve decided to have a child via egg donor and surrogate; in the end, they abandon that and conceive a child with a close friend, and they forego amniocentesis that would detect birth defects. When their newborn requires a CAT scan, Solomon describes the terror any new parent would feel at being told that their brand new baby may have something seriously wrong with it. In that brief span of time between being told that, watching his newborn son undergo the scan, and finally being told that all was well, Solomon discovered in himself what most of we parents who have children with unexpected conditions discover: that our love for those children prevails over terror.

All that said, however, I’m still at sort of a loss about this book. I wonder what the real point of it is: if the point is to engender tolerance and compassion for diversity, I think Solomon paints too bleak a picture of most of his subjects to accomplish that. And who, exactly, is this book’s intended audience? If it’s for the general public, I think in large part it will only serve to reinforce the societal feeling that difference is scary and unpleasant. If it’s meant for the families of children with “horizontal identities,” I think, unfortunately, Solomon falls short of the mark despite his extensive research.

Down Syndrome Parenting 101 by Natalie Hale

[Originally posted on January 15, 2013 here]

DS101Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier
by Natalie Hale

Surprisingly, there actually hasn’t been a lot of hype about this book in the Down syndrome parenting community – at least not in my circle – since its publication in 2011. I only recently became aware of its existence and wanted to take a gander at it, not so much because I feel in need of a special parenting guide, but I like knowing what’s out there concerning Down syndrome. Maybe this book would offer up some wisdom that’s not already out there.

The book starts off strong with a Foreword by Martha Beck. Let me just say right off the bat that I’m pretty sure I’m in some weird minority in that I did not particularly like her book, Expecting Adam: A True Story of Birth, Rebirth, and Everyday Magic
, which I read at a friend’s urging when Finn was a baby. Too full of paranormal and supernatural hooey for my constitution. However, I liked her Foreword in this book. First, she acknowledges “early intervention therapies designed to make him [her son, Adam] more ‘normal.'” Then she says,

But at the end of the day, I knew my child was simply genetically different from those without the syndrome. The more I heard people talk about teaching my unborn baby to be “normal,” the more they began to sound like animal trainers whose speciality was teaching kittens to act like puppies. The assumption seemed to be that everyone wants a puppy, and that getting a kitten by mistake was a tragedy, to be avoided if possible, grieved and mitigated if necessary.

She goes on to say,

They seemed to take it as a given that children with Down syndrome must be made as “normal” as possible, and that their success should be measured by how close they come to “normalcy.”

Yes. That’s how I see it. So I really appreciated that.

In the first chapter, the author says flat out that her 26-year old son with Down syndrome is “average. This book didn’t grow from life with a super-achiever; Jonathan is somewhere in the middle of that wide spectrum we call Down syndrome.” I also appreciated that. There seem to be so many books and articles that focus on the “super-achievers” with Ds, and the truth is that most people with Down syndrome fall in the middle, or average. This feels real to me, honest.

Unfortunately, further on in the book, she loses me with her yogic/spiritual spin on Down syndrome. She makes sweeping pronouncements about the uncanny abilities of children with Down syndrome to see right into people’s souls, about how they are like angels on earth, blah blah blah. I can’t stomach this type of thing, and frankly, I’ve never seen this type of uncanny ability in Finn. Is he friendly to people? Yes! But I don’t think it has anything at all to do with a special intuition endowed upon him by that extra chromosome; I think it’s more a sort of innocence and even naivet√©. He’s not jaded. He’s not worldly enough to be jaded, and perhaps he never will be. In any event, he displays less than angelic behavior all the time, and I don’t think he’s unusual in that regard – so the whole “angel” spin doesn’t sit well with me.

Despite Martha Beck’s remarks about interventive therapies for kids with Down syndrome in the Foreword, the author goes on to say, “Most parents choose to enroll their baby in Early Intervention; it’s considered absolutely best practice.” Blech. She acknowledges that some kids do fine without EI but the only example she gives is a family that had several children, all of whom were homeschooled. I honestly wish there was more discussion about the pros and cons of Early Intervention – at least as it pertains to Down syndrome (I can’t presume to speak to other disabilities since I’m not knowledgeable about them). I wish Early Intervention were presented as more an option than a stringent necessity. I think there needs to be open discussion about what the underlying goal of EI is – to “normalize” kids as much as possible? – and I think a lot more thought and discussion needs to take place about the actual value of EI. Disability Is Natural: Revolutionary Common Sense for Raising Successful Children With Disabilities
is, as far as I know, the only book out there that presents a viewpoint on EI that differs from what’s widely accepted; every other book out there on Down syndrome presents EI as a must.

In any event, Down Syndrome Parenting 101 does contain some useful information on schooling for kids with Down syndrome, and one of the big things that drew me to read this was that I had read somewhere that the author is a Down syndrome literacy guru, and I’m at a point with Finn where I am seeing how ripe he is to learn beginning reading, and what a positive impact that could have on his future school placement (among other things). And I’m also completely intimidated by the prospect of undertaking the endeavor to teach Finn to read, so I was looking for information and encouragement to that end in this book. It did at least set me on the right track as far as beginning to research methods that seem to work with the visual learning style that is inherent in Down syndrome.

All in all, I think this book has a lot of fluff in it, some useful things, but it could have been a lot more invaluable than it actually is. For instance, I was secretly hoping for a chapter devoted to Potty Training Kids With Down Syndrome, but no dice. Despite my long review here, it’s a pretty quick read, and it would probably be somewhat useful to new and fairly new parents of children with Down syndrome.

The Shape of the Eye by George Estreich

[Originally posted on February 4, 2012 here; a more extensive review I wrote was published by Literary Mama here. The Shape of the Eye was released in paperback with a new afterword in 2013.]

The Shape of the Eye by George Estreich

[Note: This review originally appeared here in August, 2011 in my former book blog, Book Lust. I’m republishing it here because it’s that important a book; you can also read my interview with the author, George Estreich, here.]

A few weeks ago, in my email inbox was an email from a man I’d never heard of before, asking me if I would be willing to read a book he wrote and recently had published, and to write a review here on Book Lust. I still don’t know how he stumbled upon my book blog, and I was flattered that a bona fide author would think that anything I had to say about a book might actually carry some weight with anyone. Without hesitation, I agreed to read and review his book because I was flattered to be asked, because I like the idea of having any sort of contact with an actual author (being a wannabe writer myself), but mostly because the subject matter of his book is near and dear to me.
I have read numerous memoirs about having a child with Down syndrome. The Shape of the Eye is, hands down, the best one I’ve read. Where Jennifer Graf-Groneberg’s Road Map to Holland was a lifeline to me in the days and weeks immediately following my son Finnian’s birth, diagnosis of Down syndrome, and major surgery as a newborn, soothing me and assuring me that the grief I was feeling was normal and that it would pass in time, The Shape of the Eye examines that grief, without judgment.
Like so many parents of children with Down syndrome, George Estreich and his wife were shocked by their second daughter’s diagnosis soon after her birth, and like so many of us, they found themselves suddenly thrust into the alien territory of raising a child who is different, who is largely, in an abstract way, seen as defective by society. His book, which he spent nearly a decade doing research for and writing, is a personal, heartfelt, often witty, account of raising a child with Down syndrome. More than that, however, it is also a historical account of what has shaped our attitudes about Down syndrome – the truths, half-truths, non-truths, contradictions, and paradoxes. This is a book not only about Down syndrome, but about family, and ethnicity, preconceived notions, and what it means to belong.
Mr. Estreich, a stay-at-home dad and a poet by profession, is an extremely gifted writer. I could not stop turning the pages and throughout the book often felt as if I could easily sit down with him over coffee and shoot the shit about Down syndrome, about parenting, about family, about life.
Five stars. I cannot recommend this book highly enough.

The Politics of Down Syndrome by Kieron Smith

[Originally posted on December 8, 2011 here]

The Politics of Down Syndrome by Kieron Smith

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

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

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

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