With the possible exception of my long-suffering wife Tina, I love my three-year-old daughter with Down syndrome more than anyone else I know. She pleases and surprises me with her humor, affection, and cleverness every day. In fact, it isn’t enough to say that she is merely part of my family. In many ways she is my family: the heart that beats within its center, the glue that binds Tina and me together, and the force responsible for bringing me closer to my own mother and father at this late date in our lives. She’s the reason I get up in the morning and go through the basic, often unsatisfying detritus of modern life. She’s the primary reason I gave up drinking hard alcohol. (For now: I make no promises when she becomes a teenager.)
Nor can I overstate the basic humanity of my daughter. Cassidy is quick to laugh and quick to pout. She’s always happy to see her family and friends (of which she already has many), has a particular (and peculiar) taste in movies and television, loves animals, uses a combination of speech and ASL to communicate (though she can be difficult to understand), and enjoys the sorts of daily tasks we all take for granted, even though they are more difficult for her, such as taking her meals to her small table, taking the empty plates back to the sink, eating with a fork, and brushing her teeth. Like many other tiny female people she likes books, ballerinas, and the color pink. She is generally considered to be an attractive child. Her mother and I regularly get complements about her looks from total strangers.
She even attempts to emotionally manipulate her poor father, abet clumsily. And what could be more basic and human than that?
I’m not trying to sugarcoat my daughter’s genetic disorder with its accompanying physical and cognitive difficulties. Unlike many children her age, Cass can’t tell you her name (though she knows what it is) or how old she is or what color her wooden blocks are. She can’t do simple puzzles yet or hold a crayon properly. She regularly trips over her own feet, and her arms are shorter and weaker than those of her playmates (though her hands are oddly powerful). She suffers from muscle-weakening hypotonia, and can be almost ludicrously irrational and stubborn, even for a three-year-old.
I believe that most of these problems will pass in due time, to be (naturally) replaced with different, undoubtedly less-endearing problems. For that is the eternal nature of parenthood. But possibly some of them won’t. In spite of her many other fine qualities, Cassidy may never (for example) be able to complete simple puzzles or color inside of the lines in a coloring book. She may never be able to count properly. She may always live with her mother and me. We may outlive her.
But does that make her less of a human being? To me the question seems ridiculous: of course not. But it seems that to the vast majority of modern society, the unspoken answer is an emphatic yes.
The proof is in the demographics.
Those of you who are middle aged and older have probably already noticed that you are seeing fewer and fewer people with Down syndrome around these days. This isn’t because their lifespan, general health, or the quality of life has decreased on average; quite the opposite, in fact. People with Down syndrome are on average living longer, healthier lives and functioning better in society than ever before. Nor is my experience as the parent of a child with Down syndrome a particularly unique one. A recent study conducted by Children’s Hospital Boston (and published in the American Journal of Medical Genetics) shows that those with Down syndrome report an overwhelmingly positive quality of life; a view confirmed by their siblings. Most parents who participated in the study said they were proud of their child with Down syndrome, felt their outlook on life was more positive because of the experience, and had no regrets about having the child. In fact, 99 percent of adults with the disorder who participated say they are "happy with their lives," and almost as many say they like who they are and how they look.
Yet there are fewer and fewer of them. And there will be fewer still. The number of Down syndrome births in the United States dropped 11 percent between 1989 and 2006: a period when it would otherwise be expected to rise 42 percent based on demographic trends. One does not have to read Tolkien or play Dungeons and Dragons to grasp that my elf-like daughter is a real-life member of a dying, vanishing race. Nor does one have to be some sort of sentimental bleeding heart to grasp the tragedy that entails.
There are three key reasons for decline: ignorance, technology, and betrayal. Technology and betrayal are, by definition, exponentially more interesting. But as with most subjects involving the human race, it’s best to start with ignorance.
And to end with a moonrise.
Depending on what statistics are quoted by whom, somewhere between 85% and 95% of unborn children diagnosed with Down syndrome are aborted before birth in an act of - let’s be honest here - socially acceptable genocide. Making it that way has been a long, careful process reaching back to the founding of Eugenics: a now publically discredited 20th Century movement to force “racial hygiene” on the American population through selective breeding. At least publically Eugenics is now considered to be a pseudo-science, though in the days preceding the Second World War it was considered to be a legitimate field of study with its own journals, think tanks, public and privately funded studies, and professorships.
Nor was Eugenics restricted to academia. A quick reading of Planned Parenthood founder Margaret Sanger’s fascinating, fascistic, often repulsive Woman And The New Race (the original, 1920 edition: not the ones her modern disciples have “cleaned up” for contemporary audiences) reveals dozens of references to the desirability of preventing the birth of children like mine. It “is nothing more or less than the facilitation of the process of weeding out the unfit, of preventing the birth of defectives or of those who will become defectives.” It allows society to “gather perfect fruit from perfect trees.” Only then can society prevent “an increasing population of imbeciles.”
Nor did Sanger restrict such things to the realm individual conscience. As a founding member of the Eugenics movement, she sought to codify “racial health” – meaning racism, genocide, and forced abortion - into American law. In fact, she considered the elimination of people like Cassidy to be a moral imperative:
“We become fully cognizant of the burden of the imbecile upon the whole human race; when we see the funds that should be available for human development, for scientific, artistic and philosophic research being diverted annually, by hundreds of millions of dollars, to the care and segregation of men, women, and children who never should have been born.” - The Pivot of Civilization, pg. 100
So there you have it. If it weren’t for children like my daughter, we’d have colonized Mars, balanced the budget, and achieved world peace by 1935. Or some shit like that. (Self-serving moral relativism is a slippery bugger to get hold of, though Sanger’s modern apologists try very, very hard. They’re endlessly attempting to transform her into a sympathetic, saintly historical figure - rather than a violent anti-Semite who spoke at Klan rallies and helped establish the groundwork for the Nazi Party’s Law for the Prevention of Hereditarily Diseased Offspring. But the truth lies with the later, not the former, no matter how benevolent a smiling Sanger looked in her nurse’s uniform.)
In any case, Eugenics fell out of fashion after that whole unfortunate Holocaust matter, forcing its proponents to issue contradictory or conciliatory statements, whitewash their work, and generally go underground. But culturally the damage had been done: the idea that human worth is determined by a subjective criterion known as “quality of life” had already sunk in to the subconscious of the American people, where it remains to this day: a grim arithmetic used to justify disposing of those whom society deems "imperfect” before they can be born.
However, the prenatal genocide of children like my daughter is a cruelty that in my experience says a lot more about the ignorance of doctors, genetic counselors, foolish relatives, and nosey neighbors – the cultural inheritors of the pseudo-science of Eugenics - than it does about mothers. The vast majority of pregnant mothers, proud and swollen with life, look forward to the birth of their children. That is a normal, healthy human emotion. But doe to the damage done to our culture by the Eugenics movement, it has become the self-appointed task of these later-days Sangers to make certain that the would-be parents of those they deem “unfit” feel only shame, dread, and inevitability instead.
And the statistics show that they have been damn good at it.
We 21st Century Americans view ourselves as supremely tolerant. Yet ours is a society obsessed with perfection: both in ourselves and our children. We are infatuated with beauty, glamour, and intellectual achievement. We claim to embrace “diversity.” But that concept apparently doesn’t extend to any kind of genetic diversity. Right now it’s those with Down syndrome and other trisomy disorders who are getting it in the neck. But as the study of human genetics yields more information, other groups of “imperfect” people will see dramatic declines in their numbers. Almost certainly the next group will be those with autism spectrum disorders. Then, who knows? Epileptics? Gays? Those with a statistical predisposition to breast cancer?
This isn’t science fiction. It will happen. And who knows what we will lose in the process? In a way we really aren’t that different from the ancient Spartans, except that they were honest enough to look their “unfit” children in the eye before they murdered them.
For years, many women have had a similar experience: a blood or ultrasound test that indicates a heightened risk of Down syndrome, followed by a medical procedure to make a firm diagnosis by capturing DNA from the fetus.
Usually it's a needle procedure called amniocentesis, done almost four months or more into the pregnancy. Sometimes it's an earlier test called CVS - or chorionic villus sampling - which collects a bit of tissue from the placenta. Both pose a small but real chance for miscarriage, and the highly skilled practitioners the procedures require are not available everywhere. They also occur far enough along in the pregnancy that, in the minds of many mothers, the hypothetical “baby” has become an actual Baby(!): a situation serious enough to give even the most frivolous of people pause before terminating a pregnancy.
All of that is about to utterly and permanently change. Two California companies (They *would* be Californian, wouldn’t they?), Sequenom Inc. and Verinata Health Inc, are at this moment racing one another to get a new blood test to market that would replace the amnio or CVS by retrieving fetal DNA directly from the mother’s bloodstream. This test will be cheap to perform, non-invasive, and offer accurate results as early as nine weeks into a pregnancy: well before it becomes obvious to others, and for many mothers well before a “baby” becomes a Baby(!). In many cases this will prevent a lot of soul-searching on the part of parents: as it is intended to do, and as the medical establishment plans on helping it to do.
Sounds paranoid, doesn’t it? That doctors, hospitals, insurance companies, and possibly the federal government would target children like Cassidy for destruction? Unfortunately, it isn’t. It’s a fact because of the most basic of reasons: money. And the finishing touch on this tragedy came in the way of such things because of greed, shallowness, and a betrayal by people who should have known better: parents like me.
In March of this year Ariel and Deborah Levy of Portland, Oregon were awarded $2.9 million by a jury in a “wrongful birth” lawsuit filed against Legacy Health. This was due to the fact that the company hadn’t successfully detected the presence of trisomy-21 in their then unborn child Kalanit, thus “wrongfully” allowing her to be born, rather than being aborted. (The company had performed a CVS at their request, which came back negative.) According to the lawsuit, the $2.9 million is intended to help pay for the special needs of their child throughout her life.
In their case against Legacy Health, the Levy’s specifically pointed out that they would have aborted Kalanit had they known she would have Down syndrome. Then, contradictorily, they insisted that they love her very much - only, apparently, they aren’t pleased that she is alive. Or they wanted money. Or they were angry at the world for giving them a child with Down syndrome and wanted to punish someone. Or all of these things at once: the human heart is a very strange and fickle beast.
It’s unclear what the true motivations of the Levys were. They seem like a pleasant, prosperous enough couple. Ariel is a civil engineer and Deborah is a dental hygienist. They have two other normal children in addition to Kalanit, and live in one of America’s more affluent and beautiful cities. (And in a state with excellent low-cost health coverage for the handicapped, I hasten to add). Based on their statements they appear shocked that people are saying “hateful things” to them in light of their very public admission that they wish their daughter was never born. Which would seem insane except, that when viewed through the lens of what the Eugenics movement has done to our culture, their confusion is quite sensible. A child that *everyone knows* should never have been born has been inflicted upon them, so somebody must pay. Hence, someone gets sued. Given the nature of the decayed society we currently live in, I think the Levys are mostly guilty of severe cluelessness mixed with a supreme indifference to how their actions effect the lives of others.
Because what are very clear are the results of their lawsuit: potentially the first of many. The medical establishment (both public and private) now has a serious incentive to prevent the birth of children with Down syndrome, lest they be slapped with a never-ending serious of million dollar wrongful death suits. In fact, as tests for new potentially debilitating disorders and diseases become available, they now have a financial incentive to discourage the births of any abnormal or potential unhealthy child – a situation that dovetails with the prejudices and preconceptions of many individual doctors, genetic counselors, and those within the government’s welfare bureaucracy.
It’s a perfect storm of ignorance, technology, and betrayal brewed up in part by a couple of cast character yuppies from Portlandia. And it will wash over many, many types of children before it inevitably dissipates.
Yesterday I drove out onto the floor of the Black Rock Desert with Cassidy, Tina, and our friends Elizabeth and Lisa to watch the supermoon: the closest approach the Moon makes to the Earth during its elliptical orbit. If was a cold sunset in the way of Nevada in spring, wind whipped and bone dry, and we headed east out onto the primordial lakebed until the treeless enormity of the Selenite Range dominated the eastern sky.
Despite her mother’s best efforts, Cassidy never really seems to fit into her clothing. Her shirts never seem to cover her tummy, her sleeves are always too long, and her jackets never seem to sit properly on her frame. They’re perpetually sliding off of her shoulders, one at a time. To make things worse she despises hats and gloves, and won’t wear them even on the coldest of days. So with understandable concern I set this most beloved of tiny vagabonds – hair wild, hands slightly purple – down upon the desert floor, stretching flat and almost infinitely outward to its boundaries of uninhabited mountains in all directions.
And then I gave her some freedom.
She took off, running with downward glances, aware as always of her own tendency to trip over the slightest obstacle. It was an almost painfully careful run that slowed only so that she could negotiate the inch high tracks left by SUVs on the desert floor. Now and again she muttered a word or two to herself that were rendered unintelligible by the wind, save that they were words and meant something to her. I followed behind, dutifully available for the occasional nervous glance she took over her shoulder, defiant of my authority but wanting to know that I was nearby all the same. We plodded on like this in silence, feet kicking up dust, eccentric father and vagabond daughter, until the giant orange moon rose majestically over the distant mountains and she tired enough to permit me to pick her up.
We rejoined her mother and our friends. They pointed up at the full moon and told her “moon.” Cassidy in turn pointed at it and repeated “moooo.” Then, in a moment of whimsy, Elizabeth began howling like a wolf. The rest of us followed suit and, in the short, joyful moments that followed, all five howled crazily like wolves, my daughter pausing only momentarily to giggle before resuming her soft, almost shy howl at the giant orange shape suspended in the heavens before us.
What does the future hold in store for my daughter? Will she be treated cruelly or kindly by other children? Will she know the tender touch of love? Will she be one of those rare ones that go to college? Will she be able to have her own family? Will she spend her life feeding chickens and tending the garden on my ranch? Will she die alone after her mother and I have passed? Will she die young from heart problems? Will she spend her declining years institutionalized and insane from Alzheimer’s? Will she die old and content in our tiny town, another of its pantheon of ancient, colorful desert rats?
Maybe. Maybe not. But one thing is for certain: there was nothing wrongful about her birth.