Life as Jamie Knows It

by Michael Berube

  Jamie tells that story to this day. It is The Story of When My Parents Forgot My Retainers, and for Jamie it is part of the trip-to-Dublin saga, which began with The Morning I Had Coca-Cola for Breakfast. (There literally was nothing else in the Dublin airport for him to drink.) When we returned to the United States, there was more pink goo, and another Slim Jim. And then, only then, did our long Dental Drama come to a close. Retainers 3.0 were the last edition; Jamie wore them for a full year and he has been unencumbered since the age of sixteen.

  Braces and retainers are ordinary. Pneumonia is not. Not long after he got his braces, poor kid, he developed a persistent cough. Janet had a bad feeling about this, and her bad feeling was confirmed when a savvy young doctor ordered an X-ray and discovered a telltale white blotch on his lungs. We will always be grateful to her for ordering that X-ray, because it made us watch Jamie very carefully. And when he seemed to be in trouble that night, we packed him up and took him to the emergency room.

  It was a rainy Monday night. In the back seat, Jamie was muttering, “I don’t wanna go to the ER” and a wide range of variations thereon, like “No ER, try other kind” and “Maybe go someplace else instead of ER.” In his younger days he had lots of idiosyncratic ways of expressing aversion, the first of which I heard when he was six years old. I took him to the rainforest room at the Indianapolis Zoo, which was filled with uncaged birds and snakes, and he cried out, with all the eloquence a young disabled child could muster, “How ‘bout try exit.” I learned that day that he had a visceral fear of birds. Apparently he was bitten by a bird as a very young child, but he’s never given us the details. He is much calmer around them now, as evidenced by his careful retreat from a large, uncaged macaw in an Omaha zoo (he was seventeen at the time), saying softly, “I mean you no harm. I mean you no harm.” But on this rainy late-summer night, when Jamie realized that his mild, reasonable objections weren’t having any effect, he balled his fists and announced, quietly but emphatically, “I hate the ER.”

  He had been taught at school not to use the word “hate,” so this was roughly the equivalent of dropping an F-bomb. Jamie waited a few long seconds to see if we would react in some way. We didn’t. How could we? We don’t care much for the ER either. And, as it turned out, we were in for an especially wrenching ER visit in which Jamie had to be restrained to a bed while he got his IV—and once again, he was not yet capable of understanding why any of this might be necessary.

  Then we heard from the back seat, in a markedly different voice, “Oh! You hate the ER. OK, then, we’ll go someplace else.”

  Janet and I exchanged looks. “Jamie,” I said at last, “are you making up words you want us to say?”

  “Yes.”

  I told him that he was very clever. And I thought this might be a good strategy for general use: when all else fails, try making up things you want your interlocutors to say! You might even fool your parents into thinking that one of them is actually speaking! Or you can try it with creditors (“Really, it’s OK if you skip this month—we won’t mind”) or political opponents (“Why, that’s true, my administration has been incompetent and corrupt!”). But though this desperate stratagem marked a new stage in Jamie’s verbal and cognitive development, it did not work.

  When he woke up in his hospital bed the following morning, Jamie got it into his head that it was now time to go home. He insisted his breathing was fine and that he had no more coughs.

  “That’s great, Jamie,” I replied. “But there just isn’t enough oxygen in your blood right now.” At thirteen, he knew enough about the circulatory system to know that it ferries oxygen from the lungs, so he knew what that meant. “Here, look at this,” I said, pointing to the pulse oximeter. “This machine measures how much oxygen is in your blood, just by that little red-light thing on your finger. It is the same machine you had when you were a little baby! And right now what does it say?”

  “Ninety-two,” Jamie read.

  “Right, ninety-two. That’s kind of low for you. You need to be up around ninety-seven or ninety-eight to be really OK.” Jamie took this in very carefully and would check the pulse oximeter periodically throughout the day, in between watching TV and playing with stuffed animals, all of them now garlanded with more fanciful names. Suddenly, late in the afternoon, he announced, “Ninety-seven! We can go home now!”

  He was really getting the hang of this thing.

  But just as Jamie had to learn that you don’t get all better mere minutes after taking your medicine, now he had to learn that his O-sats needed to stay high over a long period before he could be discharged. We would be in the hospital for one more night, just to be safe. And Jamie’s understanding of oxygen saturation levels was secured a few hours later that evening, when I said or did something that cracked him up. I don’t remember what it was; all I remember is that within seconds, the pulse oximeter reading plunged into the low eighties, the alarm went off, and Jamie totally understood what had happened. Here he was, gasping for breath with laughter, and the machine was registering it with machine-like accuracy. So that’s what this whole oxygen-in-the-blood thing is about.

  Jamie has not been hospitalized since. I now have his power of attorney (with his informed consent), so I have the legal authority to make medical decisions for him as an adult, and the right—though I hope I will never have to use it—to override his wishes. I think this puts me in a paternalistic relationship with regard to Jamie, which is somewhat justified, perhaps, insofar as I am his father. And, in fact, that paternalistic relationship extends to all aspects of his health. I think of Andrew Solomon, quoting Harlan Lane’s complaint that “the relation of the hearing parent to the young deaf child is a microcosm of the relation of hearing society to the deaf community; it is paternalistic, medicalizing, and ethnocentric,” and replying, “This is true, but Lane seems not to recognize that parents have a definitional license to be paternalistic.”

  One afternoon, when Janet and I found that Jamie had somehow consumed four cans of Coke in the course of half a day, we gave him strict limits: two sodas per day and no sodas before noon. (This is why it is so memorable to him that he had Coke for breakfast in Dublin.) Admittedly, there are many parents out there who restrict their children to zero sodas per day, and we admire them even as we admit we don’t have their resolve. And that one time at the bowling alley when Jamie ate eight slices of pizza, as reported to me by the people in charge when I came to pick him up? That’s not gonna happen again, and Jamie knows it. The first few times he was away from parental oversight, he indulged himself with abandon—as when he went on an overnight trip to Villanova University with the Special Olympics volleyball team and decided to splurge on shovelfuls of ranch dressing. Now he knows he has to have self-control.

  This is true of any child, and of any parent’s paternalistic relationship with his or her children. But again, it has special resonance for people with intellectual disabilities, especially for people with Down syndrome, who are susceptible to obesity. Jamie is in relatively good shape on that front, but it always bears watching carefully. When I think of Jamie’s health and hygiene, I always think of the scholarly article that has my very favorite subtitle in all of academe. The title is boringly straightforward: “Balancing the Right to Habilitation with the Right to Personal Liberties.” The subtitle is totally awesome: “The Rights of People with Developmental Disabilities to Eat Too Many Doughnuts and Take a Nap.” Jamie never eats donuts and almost never naps, but you get the point. He is an adult now, and he is entitled to somewhat more autonomy than he had as a child. How much more, it’s hard to say. We—Janet, Jamie, and I—decide these things day by day.

  You may have surmised by now that we have exceptionally good health benefits at Penn State, even if we have to fork over $400 every time we lose a set of retainers. And we do. But we recently moved Jamie, now an adult, off our medical plan and onto the plan that (we hope) will serve him for the rest of his life, Medicaid. That was the time I asked Jamie to sign
over his power of attorney, and that was when I created a special-needs trust for him, with Nick as the administrator. I had already taken care of Jamie’s Supplemental Security Income, so between that and Medicaid, he cannot own more than $2,000 in assets.

  But, you may be asking, Jamie has parents who can afford the care he needs, so why should he be part of the machinery of (what remains of) the social-welfare state at all? To answer that question, dear reader, I offer you the little rant I promised at the outset of this chapter.

  If you follow national debates about health care, surely you remember the story: It was the fall of 2007, and then president George W. Bush had recently vetoed an expansion of the State Children’s Health Insurance Program (S-CHIP). In response, the Democrats tapped a twelve-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 (his family’s car hit a patch of black ice) 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, founder of the Hot Air and Twitchy websites, broke down into uncontrollable sobs. Former National Review contributor Mark Steyn vowed to give up drink and bile, and solemnly pledged to devote his life to the sick and the poor. And Senate Majority Leader 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.”

  Well, actually, that didn’t happen. What happened instead was one of the vilest episodes in the history of conservative commentary, which is really saying something. The right-wing blogosphere launched an all-out attack on the Frosts, spreading misinformation about their very modest financial status. Malkin herself actually traveled to Baltimore to snoop around the Frosts’ house, which turned out to be one in a block of row houses, and the website 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 e-mail that repeated many of the conservative talking points and 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 Limbaugh. But Michael J. Fox, whatever the degree of his frailty, was an adult. The Frost children were twelve and nine. You would think they would be granted a Children’s Exemption from that kind of vitriol, but then you would think wrong.

  In Life as We Know It, I marveled at conservatives’ antipathy to health-care and social-support services for children with disabilities: “It is a strange land, no doubt,” I wrote, “adequate only to the imagination of Dickensian satire, where leading politicians and self-appointed moralists talk endlessly about ‘family values’ while kicking the crutches out from under Tiny Tim.” In response, one of my former high school classmates, a conservative Catholic long associated with the National Review, wrote to me to complain about the characterization. No one, he said (and I paraphrase), is kicking the crutches out from anyone, and I should acknowledge that there are people of good will on both sides of the aisle. Today, I wonder: Did I go too far? Did I substitute caricature for reasoned political debate? Or perhaps did I underestimate the sheer viciousness of some people on the Right, failing to anticipate the possibility that, after they had kicked the crutches out from under Tiny Tim, they might try to harass and smear the entire Cratchit family? For now, I’m going to go with “underestimate the sheer viciousness.”

  And yet that wasn’t what struck me most about the S-CHIP debacle. What that national freak-out crystallized was something really remarkable about our debates about health care in the United States: nobody—not liberals, not conservatives, not libertarians, not the thirty 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 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 grand-nephews, 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.

  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, of course, in a sense we have to be. No one of sound mind and body can wake up every day and make the coffee 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 invisible ice can put us or our children into comas, none of us wants to think that we could lose a foot in an indoor track facility, and none of us wants to make our retirement plans on the assumption that we will be too infirm to enjoy most of our retirement.

  I emphatically 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 played “adult league” hockey into my late forties, and because so many hockey injuries in recent years have been brain injuries, I worry especially about my brain. I rely on it often, and in fact am using it right this very minute. I am every bit as horrified by the idea of becoming mentally incapacitated as anyone else; I like my present mental capacities as they are. I can’t even think the thought of not being able to think the thoughts I’m thinking. I would also like my feet, and Jamie’s, to remain uncrushed.

  When we think about the uninsured, for some reason we tend to think of the healthy twenty-five-year-old
who doesn’t see the point of buying insurance he or she 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 apparently 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. And since the Frosts were struggling but not utterly destitute, they shouldn’t get any assistance from government. It’s all on them.

  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 with a side of ranch dressing, or riding a motorcycle without wearing 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.”

  But the question of what I was getting into with Jamie opens onto a most curious political conundrum. No one has ever blamed me or Janet for bringing Jamie to term (OK, she did that part), for loving him fiercely and raising him among his nondisabled peers. On the contrary, many people assume that if we have a child with Down syndrome, we must be pro-life across the board (as, no doubt, did the family that dropped us when they saw the Kerry/Edwards sign in our yard). 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 among us take to the podium to accuse liberals of aborting fetuses with disabilities. I will say more about this in my final chapter, in which I explain once and for all the meaning of life, but pregnancies—and terminated pregnancies—are a critical part of how we think about how we talk about health.