We're all an accident or diagnosis away from long-term care. Why does our healthcare debate never address this?
If you follow national debates about health care, surely you remember the story: It was the fall of 2007, and then-President Bush had recently vetoed an expansion of the State Children’s Health Insurance Program (S-CHIP). In response, the Democrats tapped 12-year-old Graeme Frost to deliver the response to Bush’s weekly radio address. Frost had sustained significant brain injuries in a 2004 car crash and was a beneficiary of S-CHIP — as was his sister Gemma, whose brain injuries were still more severe. After their horrific collision, both children had fallen into comas — Graeme for days, Gemma for weeks. Gemma had an open-skull fracture, shattering her left eye orbit, and when she emerged from her coma, doctors planned reconstructive eye surgery on her eye — but cancelled it, according to the Kennedy Krieger Institute in Baltimore (where the Frost children did their rehabilitation therapy), “when they discovered an abscess filled with shards of wood and glass.”
The Kennedy Krieger Institute’s Potential magazine wrote up the Frosts in 2005, in a determinedly upbeat essay titled “Dynamic Duo.” It is, as the strictures of the genre demand, a story of arduous and painful recovery: “Graeme’s injury primarily affected his motor skills. He could not walk or swallow and relied on a naso-gastric tube for nourishment for nearly five months. Gemma’s core issues were cognitive; she could walk, but couldn’t remember how to talk, what many words meant, how to dress or how to brush her teeth. ‘She had to relearn everything,’ says the children’s mother, Bonnie.” But precisely because the article was written in 2005, it couldn’t tell the triumphant end of the story — in which little Graeme Frost walks the long road back to something like normal health, all the way to the point at which he can step up and respond to Republican attacks on so-called socialized medicine by presenting himself and his family as the public face of public health care.
And surely you remember what happened next! Graeme’s appeal touched even the flintiest hearts among the conservative commentariat. Michelle Malkin broke down into uncontrollable sobs. Mark Steyn vowed to give up drink and bile and solemnly pledged to devote his life to the sick and the poor. And Mitch McConnell, his voice cracking on the Senate floor, uttered the words that have since come to define his career as a public servant: “God bless us, every one.”
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Actually, that didn’t happen. What happened instead was one of the vilest episodes in the history of flinty-hearted conservative commentary, which is really saying something. The flying monkeys of the right-wing blogosphere launched an all-out attack on the Frosts, spreading misinformation about their financial status. Malkin actually traveled to Baltimore to snoop around the Frosts’ house, and Free Republic helpfully posted the Frosts’ address for anyone else who might want to explore the matter further. Senator McConnell, for his part, issued an email that repeated many of the flying monkeys’ talking points, and he asked publicly, “Could the Dems really have done that bad of a job vetting this family?”
It was one thing when Rush Limbaugh attacked Michael J. Fox, accusing him of exaggerating the symptoms of Parkinson’s disease; we have come to expect that of Rush, because as modern science has discovered, he is something substantially less than human. But Michael J. Fox, whatever the degree of his frailty, is an adult. The Frost children were 12 and 9. You would think they would be granted a Children’s Exemption from that kind of vitriol, but then you would think wrong.
Yet that wasn’t what struck me most about the S-CHIP debacle. Yes, right-wing ghouls were ghoulish. But that is their job, no? Ghoul wanted … must be able to attack children on command … competitive salary and benefits. And they gave us a useful preview of the more general national Tea Party freakout of 2009, when ordinary citizens from coast to coast assailed their elected representatives in town halls, demanding that the Kenyan usurper in the White House be stopped before he got his government into their Medicare.
But that national freakout crystallized what is really remarkable about our debates about health care in the United States: Nobody — not liberals, not conservatives, not libertarians, not the 30 remaining socialists in the country — ever says the word “disability.” We simply do not think about disability when we talk about health care. And yet Graeme and Gemma Frost were children with disabilities. They were not often described that way, but the fact is that they were children with disabilities. And you know what else? Some of the people on Medicare and Medicaid and Supplemental Security Income are people with disabilities. Your parents, your cousins, your grandnephews, your neighbors — some of them are people with disabilities. They have autism or Alzheimer’s or arthritis or achondroplasia or carpal tunnel syndrome or Crohn’s disease or Parkinson’s or Huntington’s or cerebral palsy or MS or Down syndrome or traumatic brain injury; they are deaf or blind or paraplegic or schizophrenic. Some of them don’t have a diagnosis at all, or if they do, it is “pervasive developmental delay,” which means “we have no idea what’s going on.” Some of them came into the world that way; some inherited a genetic anomaly; some caught a virus; some, like the Frosts, simply happened to be in a car that hit a patch of black ice one winter night. And you might be one of them yourself — if not now, maybe later. One never knows.
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So why don’t we talk about disability when we talk about health care? If the previous paragraph gave you pause, if you stopped for a moment and shuddered at the thought that you or a loved one might lose your faculties, physical or cognitive, then that’s probably a good indicator of what’s going on here: Individually and collectively, we are in denial.
And in a sense we have to be. No one of sound mind and body can wake up every day with a visceral awareness that their soundness of mind and body is a happy accident. None of us wants to start up the car in the knowledge that a random patch of ice can put us or our children into comas, and none of us wants to make our retirement plans on the assumption that we will be too infirm to enjoy it.
I assure you that I include myself in this. I have been healthy for most of my life, barring a few years of depression, a couple of broken fingers, some recent high blood pressure, and an array of the usual minor illnesses. I am trying to play “adult league” hockey into my 50s, and I do not relish the idea of being unable to lace up the skates and play meaningfully, just as I do not relish the idea of sustaining a permanent injury on the ice. And because so many recent hockey injuries have been brain injuries, I worry especially about my brain. I rely on it often, and in fact I am using it right this very minute. I am every bit as horrified by the idea of mental incapacity as you are; I like my present mental capacities just fine, thank you. I can’t even think the thought of not being able to think the thoughts I’m thinking. And I know that at least one of my immediate family members — Jamie, my 20-year-old son with Down syndrome — has a very high likelihood of succumbing to Alzheimer’s in another couple of decades.
When we think about the uninsured, for some reason we tend to think of the healthy 25-year-old who doesn’t see the point of buying insurance he mostly doesn’t need. Sometimes we think of families like the Frosts, who couldn’t afford private insurance before their car crash and couldn’t get it when their children acquired serious disabilities. But to gauge by the level of anger visited upon that family on the grounds that they were struggling but not destitute (by the same logic conservatives use to argue that people with cell phones and color TVs cannot be poor), millions of Americans think of health insurance as a personal calculation, like putting only just so much change in parking meters. You make that gamble, you leave your car too long, you get a ticket, it’s your problem. Or you make that decision, you go without insurance, you get sick, fine, you knew the risks. You pays your money and you takes your chances, and don’t come around here looking for a handout when you lose your shirt.
Quite apart from the cruelty of this devil-take-the-hindmost approach to health care, what’s really stunning is how profoundly foolish it is. Sure, people know (or know that they have to pretend not to know) the risks of smoking, or drinking heavily, or eating bacon double cheeseburgers, or riding their motorcycle without a helmet. But most disabilities don’t work that way. They’re not the result of calculations and risk management. Only the most sociopathically callous among us would say, “Jack totally deserved that brain injury from falling off that ladder … he knew the risks when he went up to clean the gutters.” And to this day, no one has ever said to me, “you knew what you were getting into when you had Jamie … you pay for him.”
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But the question of what I was getting into with Jamie opens onto a most curious state of affairs. No one has ever blamed me or my wife Janet for bringing Jamie to term (OK, she did that part), for loving him fiercely and raising him among his nondisabled peers — starting with his older brother Nick, who did so much to show his peers how to treat Jamie like any other kid. On the contrary, many people assume that if we have a child with Down syndrome, we must be pro-life across the board. And the reason they make that assumption — even though we display all the social markers of Liberals in Good Standing, being pinot-grigio-drinking, New York Times-reading, gay-friendly college professors — is that there is, after all, one area of American political life in which people talk about disability and health care in so many words. And that is when the Sarah Palins and Rick Santorums take to the podium to accuse liberals of aborting fetuses with disabilities.
This is a popular meme among the conservative punditocracy, as well. Michael Barone covered himself in glory four years ago when he remarked, “The liberal media attacked Sarah Palin because she did not abort her Down syndrome baby. They wanted her to kill that child … I’m talking about my media colleagues with whom I’ve worked for 35 years.” (Barone later apologized, saying he “was attempting to be humorous and … went over the line.” Which is totally understandable, because that joke could have been really funny with the right delivery.) In more decorous language, every few years George Will writes a touching column about his son Jon, now 40, who has Down syndrome and a deep love of baseball to rival his father’s; but I have yet to see a column on Jon Will that does not take a swipe at pro-choice liberals who are allegedly responsible for some kind of “moral regression.” The reason people abort fetuses with Down syndrome upon receiving a “positive” result from amniocentesis, according to Will, isn’t that they are making difficult moral choices for themselves and their families; it’s all due to “baby boomers’ vast sense of entitlement, which encompasses an entitlement to exemption from nature’s mishaps, and to a perfect baby.”
It’s an interesting turn of phrase, that bit about “nature’s mishaps.” But for some reason it applies only to mishaps in utero. Once you’re born, health care and health insurance is a personal matter, and your encounters with nature’s mishaps are nobody’s business but your own. That’s why you haven’t heard from any American conservatives with the honesty or integrity to admit that the Affordable Care Act, known derisively in some (or all) quarters as “Obamacare,” prohibits insurance companies from denying coverage to disabled children under 19. Or that starting in 2014, the law will prevent insurers from excluding anyone from coverage or charging higher premiums for any pre-existing condition — including a disability. Thanks to provisions in ACA that have already taken effect, Jamie now has health coverage through age 26 — just like any other young adult. At least until the Supreme Court overturns Obamacare, possibly as soon as this week.
Janet and I didn’t want an amniocentesis in 1991, partly because we knew that it induces miscarriage in one out of every 200 attempts, and partly because we didn’t think Down syndrome was worth screening for. We still think that. So in the intervening 20 years, we’ve tried to persuade people that prenatal screening isn’t all it’s cracked up to be. It certainly won’t guarantee you a perfect baby, since it doesn’t detect autism or cerebral palsy or just plain cussedness. We’ve tried to make the case that people who want prenatal screening should have access to it — but that the medical profession shouldn’t oversell it, let alone recommend it across the board. Most of all, we’ve tried to argue that if you want prospective parents to go ahead and raise children with significant disabilities, you should promote that agenda by way of persuasion rather than coercion. And finally — this should go without saying, but it never does — you should be prepared to support the social welfare programs those children will need as they grow.
In 1996, Tucker Carlson wrote an essay on prenatal screening and Down syndrome for the Weekly Standard titled “Eugenics, American Style.” Earlier this year, in the wake of Rick Santorum’s remarks about how liberals hate and kill babies with disabilities, Slate magazine republished Carlson’s piece, calling it a “classic, powerful” essay. Well, to each his own, I suppose. I found Carlson’s essay intellectually dishonest in 1996, and I haven’t changed my mind since. Carlson writes:
It would be unfair to single out organized Down Syndrome groups for their unwillingness to confront the subject of abortion, since the willful blindness runs much deeper. In “Life as We Know It,” his recent book about raising a son with Down Syndrome, Michael Berube describes the typical response on an Internet discussion group when the subject of prenatal testing and abortion arises: “Every time someone brings up the question on the listserv, he or she is met with dozens of e-mail responses reading, “NO! NO! NOT ON THIS LIST! Please don’t have this discussion here! There are plenty of other newsgroups for this debate. This is about children with disabilities.”
Why do I call this intellectually dishonest? I don’t toss around that phrase lightly. But here Carlson speaks of “willful blindness” to the ethics of abortion by citing a passage from my book — a passage which is followed by fourteen thousand words on the subject of selective abortion for fetuses with disabilities. (Yes, fourteen thousand. I counted, and so did my editor.) The whole point of that chapter of my book is that we absolutely have to confront those questions, difficult and wrenching though they be. And yet Carlson’s pretense here — echoed since by Will, Barone, Santorum, Palin, and a cast of thousands — is that liberals don’t debate these things, that we don’t agonize over whether to bring children into the world. But of course we do. And some of us see disability as something intrinsic to the human condition, something ineradicable and ineluctable. In fact, some of us think that an awareness of the ineluctability of disability should inform our discussions of health care and national policy. Because otherwise we would wind up with a world in which people debate issues of public health without thinking how those issues are shaped by disability, and a world where people talk about disability only until certain fetuses with disabilities are brought to term. And that kind of world wouldn’t make any damn sense whatsoever.
I have to admit that in many ways, Janet and I lucked out. We (and by “we” I mean “Janet”) gave birth to Jamie over 20 years ago, and he’s grown up to become a funny, warmhearted young man of boundless intellectual curiosity — an irrepressible ignatz who has learned second-year French and who is familiar with hundreds of shark species and thousands of other animals and who now wants to travel everywhere on the planet and sample every kind of world cuisine (even Scottish food, may all relevant dieties help him). He’s good company — and in one way he’s the healthiest person in his family: He’s the only one who doesn’t have asthma and animal allergies. For his part, Jamie lucked out as well, getting a wonderfully supportive big brother and a small army of dedicated doctors, therapists, school paraprofessionals and job/life coaches. So the next time we talk about health care in the United States — which, let me see, should be tomorrow and every day thereafter — take a moment to think of people like Jamie and all the people who have helped him along the way. Jamie has needed some help in order to become independent; not as much as we’d expected, and certainly not as much as many other young adults. He’ll need a job coach, yes, but he’s a diligent and conscientious worker who likes describing himself as “diligent” and “conscientious” (yes, he uses those words). Of course, we all need help in order to become independent — that’s one of the paradoxes by which we live. But in Jamie’s case, some of that help was provided by you. You should be proud of that, and you should know that Jamie and his family are ready and willing to return the favor, should any of nature’s mishaps happen to you.
Michael Bérubé is the Paterno Family Professor in Literature and Director of the Institute for the Arts and Humanities at Pennsylvania State University, where he teaches cultural studies and American literature. He is the author of several books on cultural studies, disability rights, liberal politics, and debates in higher education, including "The Left at War," "What's Liberal About the Liberal Arts? Classroom Politics and "Bias" in Higher Education" and "Life As We Know It: A Father, A Family, and an Exceptional Child." He is the 2012 president of the Modern Language Association. More Michael Berube.
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