Ariel Levy’s story of miscarriage ran last week in the New Yorker and exploded across the country, receiving a resoundingly positive reaction from empathetic readers. When the Dish picked up her story, their readers also responded with an outpouring of comments describing the grief and pain of miscarriage. This bursting forth has opened a door, shedding new light on a previously unseen grief. Melissa Lafsky Wall explained the reaction Monday in her piece “Giving Voice to the Silent Sorrow”:
I never heard of the “silent sorrow” until a few months later. Learning that a phrase existed for women who’ve miscarried made me even sadder. Its presence means that there are untold armies of women marching grimly through life, carrying their silent sorrow like a wound patched up with duct tape, and no one even knows what they’re suffering. Pain will always accompany losing a pregnancy. But silence — that part is optional.
Earlier this year, I had the opportunity to interview a mother who lost three children to miscarriage. This is her story. My hope (and hers) is that it will keep the conversation going, and help other grieving mothers know that they are not alone, and that every lost child counts.
Mike and Katie sped along a country road in Fruitland, Idaho. The local hospital was on the other side of the Snake River in Ontario, Oregon—thankfully, only minutes away. It was only a few days after Katie’s 20th birthday, four months after their marriage in an old Idaho schoolhouse.
Katie prayed frantically. “I don’t care if this baby is handicapped, I don’t care if this baby doesn’t have an arm or leg,” she thought. “I just want this baby. I want this baby alive.”
She remembered how happy they had been when they found out she was pregnant, only five weeks after their August wedding. The following months were gloriously normal. Katie had terrible morning sickness, and puked on the side of the road during a Thanksgiving vacation.
But in December, she began bleeding. She thought to herself, “Maybe the doctors can stop it… maybe the baby can still live…”
But the baby was gone. Friends told them helpfully, “It’s just your first baby, you’ll have another one.” Others said, “You weren’t very far along, it’ll be better the next time.” Katie smarted under their words. Her arms hung limp and empty, aching for her child.
Katie had three normal, smooth pregnancies between 2002 and 2006: the three boys, Braden, Nathan, and Ian, were healthy and boisterous.
When Ian was eight months old, Katie found out she was pregnant with her fifth baby. At 19 weeks, the family went in for an ultrasound. Everything was fine. Katie had begun to feel her baby’s little kicks. She hoped it was a girl.
All signs point to Gov. Chris Christie cruising to reelection in New Jersey tonight.
This is one of those times when personal bias is well nigh overwhelming: Christie—an authentic, half-Italian, New Jerseyan Bruce Springsteen uberfanatic, and a strong conservative by any reasonable standard—is about to rocket to the top tier of 2016 presidential contenders.
Judging by a spate of recent posts and on-the-ground reports, Business Insider’s Josh Barro is an unabashed fan of Christie as well. He even brushes aside the one serious reservation I have about the governor: his proclivity for in-your-face confrontations—in a word, “bullying”:
Christie’s confrontational personality can appeal to all sorts of electorates so long as he trains his anger in the right places.
When Christie yelled at that teacher yesterday about how education spending levels will “never be enough” for New Jersey’s teachers’ unions, he was doing so in a state that spent $19,291 per pupil on K-12 education last year — more than any state except New York and Vermont and 74% more than the national average. … So long as Christie keeps training his anger in the right place, Christie will be O.K. What national liberal reporters don’t get is that “towards teachers” can be the right place, politically and substantively, to train that anger.
This is true as far as it goes.
Which I fear is not actually very far.
Back in 2010, I wrote this at U.S. News:
In the short term, the example of New Jersey’s Gov. Chris Christie is instructive. He has maintained popularity while aggressively pushing an agenda of fiscal austerity. How does he do it? Simple: In teachers unions and state-government employees, Christie has found a juicy, isolatable adversary. This works on the state level, where things like pensions and teacher benefits are significant sources of budget shortfalls—unlike on the national level, where middle-class entitlements are the big driver.
The lesson is this: To the extent that “government” is a sectional entity—an interest group consisting of people who have not had to “sacrifice like the rest of us”—Republicans will find that cutting it is politically popular. To that extent that “government” is Grandma and Grandpa in Boca Raton, Republicans will need to tread carefully and—it’s possible to do both—honestly.
Zoom in on “juicy, isolatable adversary.”
At the presidential level, teachers aren’t going to cut it. Neither are employees of the federal government, whose salaries account for about 5 percent of total federal spending.
Is Chris Christie going to yell at senior citizens about Medicare?
Is he going to yell at beneficiaries of food stamps?
Is he going to yell at families on Medicaid or CHIP?
Is he going to yell at farmers about agribusiness subsidies?
If Christie is a wise and disciplined campaigner, I find it hard to believe he’d do any of those things. And given his recent disparagement of the GOP’s “libertarian strain” in the context of the debate over the national security state, I can’t see Christie getting up in the grill of a Pentagon contractor, either.
Teachers and public-sector employees who don’t want to pay as much for their healthcare as most of the rest of us do are the “right targets” when you’re arguing about state budgets. In fact, they are ridiculously easy targets. They are to Chris Christie what southern reactionaries are to Sacha Baron Cohen.
But I ask Josh: who are the analogously easy marks when you’re talking about the federal budget, and do you honestly think it will do Chris Christie any good to get in their faces?
Josh Barro has a helpful post on why health insurance is different from other insurance products, such as homeowner’s or flood insurance.
The hardy perennial of problematic insurance analogies, though, is the one that’s supposed to make the case for expanding catastrophic health insurance and calling it a day. I first encountered it in some Cato Institute literature at college in the mid-’90s and came across it again a couple days ago:
Conservatives love catastrophic health insurance. Indeed we believe non-catastrophic health “insurance” is an oxymoron. It’s prepaid health care. Would you buy auto insurance for an oil change or tune up or new tires?
This one has bothered me in an inchoate, can’t-quite-explain-why sense for years. I wondered if the people who use it think beyond its superficial logic. So I decided finally to parse it.
Here’s why I think the analogy is lousy:
First and foremost, when I hear “catastrophic” car insurance, I don’t think of anything that happens in the mechanic’s garage, like rotating tires. I think of a collision with another car. When I got my first set of wheels in 1993—as it happens, an ’84 Ford Tempo that leaked oil profusely—I had the choice of buying “liability” insurance and opting out of “collision”: that is, in the event of an accident in which I was at fault, my plan would cover the damage to the other car but not my own. In my case, this was a decision that made itself: If I wrecked the Tempo, almost beyond repair as it was, its next and final home would be the scrap heap.
Equally obviously, we do not get to decide whether to insure our bodies only in the case of collisions with other bodies.
Which segues into my next point: Unlike 1984 Ford Tempos, we don’t send people to the scrap heap if they’re old, infirm, or otherwise financially inconvenient. We don’t “trade in” people. Indeed we spend an astonishing amount of money on the human equivalent of problem-plagued cars. You may have read recently of a startling fact: Half the population accounts for a trivial amount of our total healthcare expenditures, while a scant five percent spends half the total amount.
If you want to press the cars/people insurance analogy, you have to acknowledge the fact that, while we don’t put in an insurance claim every 5-7,000 miles, neither do we try to resuscitate 1984 Ford Tempos, or keep them on the road until 2084.
In the same sense that the writer (Scott Sumner) whose passage I quote above mocks the idea that maternity care is a “catastrophe,” is old age any more or less a “catastrophe”?
Moreover, there is this business of “preventative maintenance.” Are humans and cars even remotely analogous from this angle?
I’m calling b.s.
No, I don’t use insurance to pay for tuneups and oil changes. But what is the closest approximation, in the realm of healthcare, to tuneups and oil changes? The implication is that the routine checkup—the annual physical exam—is the closest approximation. But is it?
To my lights, oil changes and tuneups and tire rotations are more akin to proper diet and exercise than they are to a visit to the doctor’s office. These are the things we do to keep our bodies in good general health. We don’t consume professional medical services to do that—we go to the produce section and hit the treadmill.
Wait a minute, you say; what about the similarity of, say, mileage service intervals (it’s time you had your radiator flushed) and age-based disease screening (you’re 40 years old now; we don’t have to worry about your testicles so much as your prostate gland).
Well, what about that? What’s the worst a mechanic is going to find? That the car you paid $35,000 for is going to require an unforeseen $3,000 repair? As I argued a moment ago, when it comes to cars, you get to weigh the cost of fixing it against its overall, and annually depreciating, value.
If a car is diagnosed with, say, juvenile diabetes, you can cut your losses. And, unlike babies, if it’s disabled when it comes out of the factory, it either doesn’t reach the showroom or … there’s this thing called a warranty: it gets fixed at the manufacturer’s expense.
I could go on, but I’ll conclude with this last thought. I realize cars have become more and more dependent on onboard electronics, but I grew up around plenty of guys who could change their own oil and tires. And while we can self-examine for signs of certain types of cancer, we can’t be our own doctors.
It’s helpful to step back and remind ourselves why we ask doctors to perform “preventative maintenance” on our bodies. If diseases are caught early, they’re often cheaper to treat or cure. If we stay in good physical shape, we reduce the chances of developing many diseases in the first place. When we preventatively maintain our cars, however, we are merely forestalling problems that we would have to pay out-of-pocket for anyway. If you don’t change your oil, your car insurance plan isn’t going to cover the cost of fixing a seized engine.
Maybe it’s time conservatives retired this car insurance analogy. Surely someone took out a life insurance policy on it!
Often discussed in different sections of the newspaper or the blogosphere, the twin crises of health care and higher education are extraordinary in their similarities. Both are regarded as necessary goods for human flourishing whose costs are spiraling out of control. Both rely on a professional class that is becoming more specialized, losing the generalist who once cared for the “whole person.” Both have seen expanding intervention by the central government which has sought to provide access to the lower and middle classes. Both are believed by many conservatives to be properly reformed by means of market-based solutions. Both are the subject of intense contemporary political debate.
And both were once almost exclusively the province of the Church, and, indeed, can trace their institutional origins—hospitals and universities—as part of the Church’s charitable ministry.
This latter fact, it seems to me, sheds bright light on the common roots of the contemporary crisis of each area. The dominant voices in the debate in both areas—health and education—cleave closely to the contemporary party lines. On the Right, the case is made that a competitive market model will solve the ills of both health care and education. By allowing prices to be driven by supply and demand, and the motivations of the primary actors—doctors and professoriate, on the one hand, patients and students, on the other—to be largely self-interested, the market will resolve how best to allocate the relatively limited access to the best health care and the best institutions of higher education. On the Left, it is believed that the State should rest a heavy hand on the scales of the market, enforcing widespread access, suppressing costs (or providing subsidies), and forcing providers to conform to state-mandated expectations and standards.
Yet there is something fundamentally amiss with making provision of health and higher education contingent on market models and profit calculus, as both seem to be goods that are not subject to the same kind of calculus as automobiles and bubble gum. The very idea that doctors and teachers are or ought to act out of the motivations of self-interest, and provide services to their “consumers,” seems fundamentally contradictory to the kind of work and social role performed by each. The decline of the “generalist” in each sphere is indicative of a deeper crisis of the willingness to act on behalf of a broader conception of the good intrinsic to each profession and on behalf of the person being served, in favor of the specialization encouraged by modern canons of efficiency, productivity, profit, and rationalization.
At the same time, the State is rightly suspected of being unable to fundamentally improve or even maintain the quality of either sphere. It is doubtless the case that it can assure access by the heavy hand of threats, but many rightly worry that, as a consequence, the quality of care and education will deteriorate as a result. The State takes on the ersatz role of “generalist,” seemingly concerned for the good of the whole. It can only pursue that good by seeking to control pricing and access while influencing the ways “care” is provided, but it fails necessarily in caring for the vision of the whole that the actors of the professions are no longer willing or able to perform.
The debate as currently constituted represents a pincer movement aimed ultimately at the re-definition of each area—as we have seen in so many areas of contemporary life. While superficially opposites, proponents of each position in fact share a fundamental hostility to the original presuppositions that had informed the foundation of both institutions—the corporal works of charity central to the Church’s earthly mission.
In fact, it seems increasingly evident that practices such as health care and education are likely to fail when wholly uninformed by their original motivation of religious charity. Neither functions especially well based on the profit-motive or guided by large-scale national welfare policies. As the failure of the market model in each area becomes evident, the demands for the second—government intervention and control—have quickly followed. That both are reaching crises at the same time is hardly coincidental: both benefitted for a long time from the “social capital” accumulated as Church institutions, a legacy of cultures and practices that persisted for a long time even after the practitioners had ceased to embrace them. However, in both cases, the social capital is now depleted, and each now operates on a nonsensical combination of self-interested market motivations and taxation and threat-based national welfare policy. Neither is a fitting motivation or model for either sphere.
Vaccination has been a widely adopted practice in the U.S. since the very beginning. Thomas Jefferson himself was a great proponent–particularly of the smallpox vaccination, which he received shortly after its development in 1796.
Yet last week, in North Carolina’s Guilford and Forsyth counties, as many as 1,400 students faced suspension because their parents failed to vaccinate them. Those parents have opted out of the medical practice: their children have not received the required tetanus, diphtheria, and pertussis (whooping cough) vaccine, commonly known as TDaP. According to North Carolina state law, children must have up-to-date vaccinations or face suspension.
The decision to vaccinate doesn’t merely affect the child in question, but can also affect a family’s community by threatening the health of other children. It pushes a family decision into the public arena. Some people, such as Phil Plait, argue that the community impact is so great, the government is right to mandate vaccination. Plait, despite his personal libertarian leanings, explains:
In some areas, public school authorities have mandated that students be vaccinated for various diseases, and that of course can run afoul of parents’ beliefs. I’ve wrestled with this problem for a while, and I eventually came to the conclusion that a parent does not have the right to have their child in a public school if that child is unvaccinated … It puts other children at risk.
The societal aspect Plait references is “herd immunity.” Herd immunity is “when a critical portion of a community is immunized against a contagious disease, [so] most members of the community are protected against that disease because there is little opportunity for an outbreak.” David Perry frames the problem this way:
Happily, in a population of vaccinated people, infectious but preventable diseases have trouble spreading even to the immunocompromised. But herd immunity breaks down when vaccinations are not administered to all who can medically receive them. At that point, people who chose to refuse vaccinations endanger those who had no choice.
“Those who had no choice” refers to individuals born with immunodeficiency disorders. Such individuals are protected if their community is, for the most part, vaccinated. But the more their peers refuse vaccination, the more at-risk these individuals become. The possible societal fallout explains why so many support vaccine mandates. Yet while such mandates are well-intended, particularly considering children who can become ill and even die from preventable diseases, the question of liberty still remains. When should the government demand vaccination from dissenters? Can the government, as the Center for Disease Control puts it, employ “the police power of the state” to coerce parents against their will and perhaps consciences?
Vaccination could be a strong case for governmental health mandates: no one wants a child to die from a preventable disease. Nevertheless, if the government has a right to mandate vaccination because “it knows best,” it may slide into legitimating other less crucial mandates. Many people agree that children should receive vaccination, but such agreement should not authenticate governmental coercion. As it currently stands, these mandates require children in government-funded schools to vaccinate their children. However, parents need not enroll their children in such schools. This seems a just arrangement.
America has not yet reached a level of non-vaccination worthy of governmental intervention; hopefully citizens will recognize the medical and societal value of Plait’s argument before we reach that point. “If you want to rely on the public trust then you have an obligation to the public trust as well,” he said. “And part of that obligation is not sending your child to a place with other children if they aren’t immunized against preventable, communicable diseases.”
Ultimately, while there is a clear medical case for vaccination, some amount of wariness is justifiable. Liberty and freedom, however, require more than doing as we please: they require a consciousness of the community, a dispassionate and informed evaluation of the facts, and decision-making based on evidence of what is best for both the individual and society as a whole. Some parents—for religious, philosophical, or other reasons—may still choose to opt out of vaccination, and thus out of government programs like public school. That is their prerogative. But such parents must realize that by opting out, they are also putting other children at risk.
Is medicine really different?
President Obama’s signature achievement is designed to drive down health care costs and expand access to medical care by mandating that all Americans carry health insurance, while subsidizing those who can’t afford it. The House Republicans recently proposed an alternative that would allow consumers to shop for insurance across state lines and offer tax deductions for health care costs. David Goldhill, Democrat and CEO, argues that by accepting the third-party insurance-centric status quo, both sides have it wrong.
At a recent Cato Institute forum for his new book, Catastrophic Care: How American Health Care Killed My Father—and How We Can Fix It, Goldhill laid out his diagnosis of American health care ills, and outlined how American medicine can be healed.
Goldhill’s involvement in health care reform stems from a personal tragedy: his father died at the age 83 when, after checking into a hospital with pneumonia, he caught a secondary infection at the hospital and died. A month later, The New Yorker published a piece by Atul Gawande profiling one doctor’s efforts to convince hospitals to implement a series of protocols which would greatly reduce the incidence of hospital-borne infection. Goldhill recounted that
What was interesting to me as someone who had just lost a parent and as a business man is that it cost almost nothing to implement these protocols, yet he was having a hard time getting hospitals to implement them.
This year Louise Brown, the very first “test tube baby,” turned 35 years old. In the decades since that miraculous moment in 1978, millions of children have been brought into the world through the panopoly of ever-advancing assisted reproductive technologies (ART). This has been the cause for celebration in many households, and allowed many couples to bear their own children in spite of nature’s resistance. In the New York Times Wednesday, though, Miriam Zoll and Pamela Tsigdinos, two veterans of the ART process, pushed back against the triumphalist narrative that can dominate these discussions. Describing an ART fair, they say:
the fair’s most powerful strategy is the suggestion that all your answers can be found within the event hall — and that the power to overcome infertility can be found within yourself.
As former fertility patients who endured failed treatments, we understand how seductive that idea is.
Americans love an uphill battle. “Don’t give up the fight” is our mantra. But the refusal to accept physical limitations, when applied to infertility, can have disturbing consequences.
They acknowledge the great achievements medical science has made, and the joy that the newly-formed families must feel. But they also point out that even if we have the capacity to achieve pregnancy and deliver children artificially, over three-quarters of the attempted cycles fail, and “behind those failed cycles are millions of women and men who have engaged in a debilitating, Sisyphus-like battle with themselves and their infertility, involving daily injections, drugs, hormones, countless blood tests and other procedures.”
Reviewing a book on the industry, Cheryl Miller recounted:
For many couples, it is a costly process fraught with uncertainty and pain, often culminating in disappointment. Not that any of this dissuades fertility patients. As one doctor tells Mundy, fertility patients are more motivated than cancer patients. Indeed, sometimes the only thing scarier than the medical procedures Mundy describes is the fierce determination of the patients themselves to have a child, no matter the cost.
Zoll and Tsigdinos themselves describe how
Even among the patient-led infertility community, the prevailing belief is that those who walk away from treatments without a baby are simply not strong enough to run the gantlet of artificial conception. Those who quit are, in a word, weak.
As a result, both of us pursued increasingly invasive and often experimental interventions, many of whose long-term health risks are still largely unknown.
Now we know better. Ending our treatments was one of the bravest decisions we ever made, and we did it to preserve what little remained of our shattered selves, our strained relationships and our depleted bank accounts. No longer under the spell of the industry’s seductive powers, we study its marketing tactics with eagle eyes, and understand how, like McDonald’s, the fertility industry works to keep people coming back for more.
As for the now-$4 billion industry that is ART, “what they’re selling is packaged in hope and sold to customers who are at their wits’ end, desperate and vulnerable. Once inside the surreal world of reproductive medicine, there is no obvious off-ramp; you keep at it as long as your bank account, health insurance or sanity holds out.”
Gwynn Guilford reports over at Quartz that the latest trend to hit South Korea is surgery for a smile:
Cosmetic tweaks like Botox have long minimized furrowed brows and frown lines. But a new technique called “Smile Lipt” carves a permanent smile into an otherwise angry face. The procedure, whose name combines “lip” with “lift”—get it?—turns up the corners of the mouth using a technique that’s a milder version of what Scottish hoodlums might call the “Glasgow grin.”
While it has been long said that it takes fewer muscles (or at least less effort) to smile than to frown, it appears that many South Koreans just want to cut to the chase. The procedure is “increasingly popular among men and women in their 20s and 30s—especially flight attendants, consultants and others in industries aiming to offer service with a smile.”
The most concerning thing about this trend, however, comes at the end of Guilford’s piece: ”as with the popularity of other cosmetic procedures in South Korea, which have made it hard for the natural of face to compete for jobs, permanent smiles may too become the norm.”
She links to a New York Times report from a couple of years back that documented how a plastic surgery culture has boomed in South Korea.
In traditional Korea, tampering with the body bestowed by one’s parents was a violation of Confucian precepts that also discouraged cremation and, later, organ and blood donations. But in recent decades, cosmetic surgery has become a weapon in Koreans’ efforts to impress others, “like buying an expensive handbag,” said Whang Sang-min, a psychologist at Yonsei University.
According to one makeup artist preparing to go under the knife, “‘You must endure pain to be beautiful,’ she said, adding that an eye job is so routine these days ‘it’s not even considered surgery.’” One market survey indicated that “one of every five women in Seoul between the ages of 19 and 49 said they had undergone plastic surgery.” The surgeons themselves report that “their main patients are young women entering the marriage and job markets. ‘As it gets harder to find jobs, they’ve come to believe they must look good to survive,’ said Choi Set-byol, a sociologist at Ewha Woman’s University.”
Such a boom has led to a situation now where “‘Koreans agree on what constitutes a pretty face,’ he said. ‘The consensus, now, is a smaller, more sharply defined youthful face — a more or less Westernized look. That makes 90 percent of Koreans potential patients because they’re not born with that kind of face.’” The trend towards facial uniformity has been so widespread that “The film director Im Kwon-taek says it has become all but impossible to find an actress who still has a traditional Korean face.”
If one stays agnostic on the medical ethics of cosmetic surgery, the procedures become a matter of free choice and open markets, where patients and doctors have the freedom to arrange an operation, as long as there is no coercion.
But the South Korean example is a very effective demonstration of the ultimate limits of a libertarian paradigm revolving around atomistic free actors. Individuals “with photos of starlets whose face they want to copy,” aggregate to create new norms, because they are part of a social order. And social order inescapably comes with the soft coercive power of conformity.
A girl satisfied with her traditional Korean face, as all 90 percent of that country’s women should be, is disadvantaged in a competitive culture for maintaining her natural body. As we gain ever greater powers over our own bodies, the implications reach beyond Seoul’s matchmaking markets to raise a cautionary note about our biotechnological future.
Opponents of Obamacare make a compelling case that the law “oversolves,” if you will, the problem of the uninsured. As Sen. Rand Paul argues in the Daily Show segment above, the Affordable Care Act’s mandate for “comprehensive” insurance plans will drive up premiums, and thereby hurt the very people the law was intended to help. (States have some flexibility on how this mandate is defined, and the early evidence on how its adoption has affected costs is mixed.)
But it seems to me that the argument for allowing young, healthy people the flexibility to purchase less-than-comprehensive plans is quite apart from its companion argument: that if consumers paid directly for more of their healthcare, they would become more frugal, cost-conscious “shoppers.” This market pressure would, in turn, force providers to lower costs. Ophthalmologist that he is, Paul cites as evidence for this dynamic the market for LASIK eye surgery: insurance doesn’t cover the procedure—and costs for it have fallen dramatically over the years.
I’m finding it hard to generalize out too far from the LASIK phenomenon. As Incidental Economist blogger Austin Frakt muses:
LASIK is an elective procedure, the purpose of which is well understood by the patient. I’m on board with the idea that insurance shouldn’t cover such things, or if it does, not the full cost and certainly not the marginal cost…
Now, let’s push the boundary. Let’s think of some things that are not exactly like LASIK. Here are some easy ones: trauma care, repair of a broken bone, insulin. I think one can make a case that insurance should cover those, either because their need is urgent and not predictable and/or because they are cost-effective in some sense. The cost liability for these can reasonably be assigned to third-party insurance.
What about an MRI scan? Is it elective? Is the purpose always clear? Is it urgent or not? What about an angioplasty? How about an antibiotic for a sinus or ear infection? Or a routine health check with various cancer screenings (prostate for men, breast for women, say)? Are these like LASIK or not?
Researchers at the University of Massachusetts medical school have reportedly made a breakthrough in learning how to silence the extra chromosome that causes Down syndrome. Down syndrome is also known as trisomy 21, as it is caused by the inheritance of an extra copy of chromosome 21 beyond the normal pair received from the mother and father. The researchers used a natural “off switch” for shutting down an X-chromosome in women, which when inserted into the extra chromosome caused it to be coated in material so that its function dropped to near-normal levels of chromosomal activity.
The UMass researchers performed their experiments using induced pluripotent stem cells (iPS) derived from a Down syndrome patient. iPS cells “turn back” adult somatic cells to become similar to the potential-rich stem cells researchers previously could only obtain from destroyed embryos. That discovery won Shinya Yamanka the 2013 Nobel Prize in medicine, and was hailed by scientists, ethicists, and pro-life activists alike as a way forward for science that did not raise any of the ethical concerns of human embryonic stem cells.
Dr. Jeanne Lawrence, one of the UMass researchers, describes the importance of her discovery as aiding controlled research of Down syndrome cellular function in the short-term, and making chromosomal therapy at least conceivable in the long-term.
The New Atlantis published one of the best essays on Down syndrome in 2008: Caitrin Nicol’s “At Home with Down Syndrome,” where she notes that despite the muscular and cognitive impairments that come with the syndrome, ”individuals with Down syndrome generally have outstanding social skills and in a supportive setting can be fairly high functioning.”
She continues, “adoption agencies report a high demand for children with Down syndrome. However, the abortion rate for fetuses diagnosed with Down syndrome tops ninety percent,” as “obstetricians are not well trained in explaining the diagnosis and have little if any clinical experience with individuals with a developmental disability.” With little access to parents of Down syndrome children, and faced with a barrage of forbidding statistics about the prospects for their child’s quality of life and the success of their marriage, ”the majority of expectant parents fall into a vortex in which abortion is offered as the sensible way out.”
In their efforts to get the word out that an extra chromosome is not a tragedy, parents and advocates describe the incredible warmth and social gifts that their child with Down syndrome brought into their lives. Indeed, they can sometimes risk idealizing distortions, as when “one astonished woman was informed by her mother-in-law that her daughter is the Bodhisattva.” Nicol notes, ”putting people on a pedestal, however well intended, makes them seem not quite human. But, as Avery’s grandmother notes, the special talents of people with Down syndrome may lie in what is most human — ‘they seem to bring out the good in people,’ she says.” Another parent described how “we were so scared of what life with Riley would be like, and now the scariest thing I can imagine is what my life would be like without him.”
‘Wouldn’t it be wonderful,’ another proud big brother asks in Gifts, ‘if every family had a kid with Down syndrome?’
That question, of course, does not express the wish that more children would struggle with disabilities, but rather that more families might find within themselves the means to understand, and to transmit to future generations, the profound truth that every life is filled with meaning, and every child is a source of joy. The deepest consequences of that discovery, it seems, have to do not with the recognition or acceptance we might offer to those who are disabled, but with the strength, compassion, happiness, and wisdom we might gain by the discovery itself, and by our acting on it. The ruling emotion that unites all the various stories told in these books is gratitude, and the reader cannot help but be left grateful as well, for the strengths on display in these stories of children with Down syndrome and of their families are the strengths we today can least do without.
Let us hope that this latest discovery continues in the tradition of Down syndrome research that should encourage prospective parents that their children will be well cared for, and that helps people with Down syndrome to live haler, healthier lives. Let us hope, too, that we can cherish our children in all their giftedness, no matter what particular hardships they may face.