The $65,000 Question

My wife, patty, and I had a disturbing reminder of why the truth matters when we visited our autistic grandson's special-needs school one afternoon. The school, Melmark, is housed in a two-story, clay-red brick building, located at the intersection of two main arteries about 20 miles from Boston. Max's school is on the first floor, where school officials have managed to rent enough space to take care of 80 special-needs children, most of them seriously autistic.

Autism is not the same thing as Down syndrome or congenital birth defects that result in physical deformity. Most autistic kids are as normal looking as their peers. Some do have a vacant, distant stare; others walk with an awkward gait from motor damage. Several of the kids carried computerized speaking pads that allow them to answer questions. These children have suffered so much neurological damage that they would be effectively mute if not for these devices.

When Max saw us, he broke into a big smile and started skipping with arms wide, looking for a hug. He's a very loving kid, and we were glad to shower him with affection. He then grabbed both Patty's hand and mine and started to pull us into the school, excited at the prospect of showing us where he studied and eager for us to meet his teachers.

At the end of each school day, when the students are dismissed at three o'clock, the teachers' workday is far from over. The faculty members gather to discuss the behavior of each student, meticulously planning the next day's activities. The student-faculty ratio is high: four teachers staff Max's class of seven. The job requires great physical stamina. The kids can be aggressive at times and must be gently restrained. Gentleness in this situation often demands as much force as several people can muster. Max weighs 140 pounds, and sometimes, when he doesn't know how to make his needs or dissatisfactions clear, he'll flop down over his desk or onto the floor and refuse to move. The physical demands Max makes on his teachers are mild compared to many of his classmates' demands.

The mostly female faculty members were all remarkably cheerful. In fact, they radiated joy. Where do they get people like this to work in these schools? I wondered. A survey of teacher satisfaction revealed that helping the children was the teachers' primary motivation; altruism is alive and well in this profession.

I understood their joy. I also have felt it as I've learned to love through taking care of Max. My grandson has taught me a lot more than I have taught him; he's schooled me in being a grandfather. When my kids were growing up, I was gone most of the time—too busy trying to save the world. Now, when Max is visiting or we're visiting him, my life focuses solely on him. There's no leaving him in front of the television while I go to my desk. At night, I can't just read him a book, say a prayer, pat him on the head, and tell him to go to sleep. In order to help him get to sleep, I play repetitive games with him, sometimes for hours. When Max visits, my schedule is Max's schedule.

The Max schedule makes me examine my priorities. It makes me think about the time I devote to doing—a lot of it simply indulging in distraction—versus how much time I give to being.

Cost-Benefit Analysis

As I was standing in the classroom, alone for a moment, an unwelcome thought came to mind. A question really. Why do we as a society take such trouble with these kids? Why does the school system spend as much as $65,000 per year to tend kids like Max? Max is never going to graduate and go to college and get a productive job. Likely, he will always be dependent on his family and the state. Simply to keep him busy, entertained, and comfortable creates a huge financial drain. Even if he weren't in school, institutionalization alone would run more than $50,000 per year.

I couldn't help but think of Peter Singer, the Princeton ethicist who argues that the governing philosophy for a society ought to be creating the maximum happiness or pleasure for the greatest number of creatures, human and animal alike. Singer has been described by The New Yorker as the most influential philosopher alive. Think about how much pleasure or happiness we could create for tens of thousands of starving African children with the $65,000 it costs to keep Max in this school. A chill came over me as I realized how powerful—how natural—Singer's argument sounds.

Singer's moral philosophy is a form of utilitarianism, which in its modern form evolved from the 19th-century writings of John Stuart Mill. Mill has profoundly affected modern liberal thought, which views freedom as the absence of constraints. Morality, as one sympathetic writer described Singer's view, doesn't come from heaven or the stars; it comes from giving as many as possible what they want and need. Most atheists and the majority of people in the post-religious societies of Europe accept this as the most reasonable way to serve the social needs of society; if pleasure and happiness are the purpose or true end of life, morality must consist in rationally apportioning pleasure and happiness to those most able to experience them. Even many Christians have embraced this proposition because it sounds so reasonable.

Singer characterizes his philosophy as ethics catching up with the inevitable conclusions of Darwinism, and he carries his thinking to its logical conclusions. For example, he advocates infanticide for children born with defects. Singer minces no words: "All I say about severely disabled babies is that when life is so miserable that it's not worth living, then it is permissible to give it a lethal injection." He asks rhetorically, "Why limit the killing to the womb?" As if to answer his own question, he says, "Infanticide … should not be ruled out any more than abortion."

Singer's view is entirely logical, although most would find it intuitively repugnant—at least for now. Singer dismisses objections to his philosophy as mere sentimentality.

What do you do, though, with kids like Max and all of his schoolmates who somehow survived abortionists' forceps or the doctors' lethal injections? Max, after all, is a human being, a teenager, a beautiful bouncing kid who loves life and other people. Surely you would not eliminate him.

But think again about what you could do with that $65,000 a year, every year, not just for starving kids in Africa, but for American inner-city kids who need better public schools. Just think about how that money could be used in the Medicaid system, which is always starved for cash.

Those who think humanity would never take severely disabled persons, particularly kids, and get rid of them are simply unaware of the history of Western civilization in the enlightened 20th century. For example, take Germany in the 1930s, even before Hitler's regime took hold. The brightest and best-educated people in Europe were openly advocating eugenics—selective human reproduction and elimination of the disabled. Doctors and educators and cultural leaders discussed how to rid Germany of the "traditional compassionate 19th-century attitudes toward the chronically ill," as one doctor put it. The sterilization and euthanasia of persons with chronic medical illnesses became a topic of great interest in German medical journals. A propaganda campaign began to encourage the German people to adopt a utilitarian point of view. Children were not immune from the campaign. A high school text entitled Mathematics in the Service of National Political Education contained math problems dealing with the care of the chronically sick and crippled. The very question that so troubled me that day in Max's classroom was asked of these impressionable students: "How much money would be available for marriage allowance loans and to help newlywed couples if the state could save the money on the 'crippled, the criminal, and the insane'?" The story of what that led to—the Holocaust—has been often told.

Speaking of the eugenics practiced in Germany or the infanticide and sex-selection abortion in China or India today—and speculating about what might happen here—lets us off the hook too easily. Peter Singer's utilitarian point of view already rules our own health-care system in significant respects.

What I'm about to say may well strike close to home. In fact, it will resonate disturbingly in millions of homes across America and Europe. Nearly every young couple having a baby today receives information about the potential health-care needs of their unborn child. Ultrasound, amniocentesis, and other tests are informing parents of a growing list of medical conditions—some 450 at this writing—in their unborn children. Doctors are afraid not to perform such tests lest they face suits for not fully informing parents of an unborn child's medical problems while the unborn child may still be aborted.

Think of the practical dilemma faced by a pregnant woman and her husband after they arrive home from a doctor's appointment. They have just been informed that their child may have neurological damage, which could display itself in a number of ways, including autism. The doctor has asked them whether they want to abort their unborn child.

What would you do? How would you reason about the decision? Would it make any difference if your health-insurance provider informed you that it would not pay for treatment of complications discovered in the testing? According to some reports, 90 percent of the couples confronted with this dilemma abort their unborn children.

Would you bring a child like Max into the world? If not, why not? And if you found out about your child's severely impaired future a day or two after the birth and if the doctor offered you the option of infanticide, what would you do then? As laudable as places like Max's school may seem, why should such efforts continue if it's in our power to make them unnecessary? That's the utilitarian voice constantly whispering in our ear these days.

The person who says yes to Max now and in the future can reason only on the basis of something completely other than a cost-benefit analysis.

Tragically, the cold calculus of dollars and cents already determines many life-and-death choices being made in America and Western Europe today. In March 2004, many people in England were horrified to learn that an unborn child who was more than 24 weeks old—at the point of viability outside the womb—was aborted for "severe disability" because the child had a cleft palate. This case brought to Parliament's attention that since 1990 there has been an inexorable rise in the number of viable unborn children aborted because they had "severe disabilities." Since severe disability isn't defined in the United Kingdom's laws, this means that a child with any medical condition, even a treatable one such as a cleft palate, may be aborted at any point in a pregnancy. Of course, pro-choice purists question why we would even make such distinctions about the fetus's condition. Why not abort anyone we choose? This debate is currently under way.

These aren't just intellectual issues. They're deeply personal and anguishing decisions that we're forced to contend with in the course of life. As I looked around Max's classroom and ran my hands over the scarred wooden desk that he sits at each day, my thoughts turned quickly to another logical extension of Singer's thoughts: Why keep people alive when they're miserable? Why not give them the opportunity to be an organ donor and give someone else life? If we get to the point where we agree with that, then why would we not just destroy the miserable person?

With a combination of machines, we can soon, if not already, keep people alive under almost any circumstances. What about the cost? Families can't pay this. The Medicare system will be broke in a few decades, sustainable only if taxes are greatly increased. The demographic shifts in America are so dramatic that while at the moment four workers are paying to support one person on Medicare, by 2030 it will be 2.3 workers. Should we expect hardworking, middle-class Americans to be paying an ever-increasing share of their earnings to keep me alive while my "quality of life"—watch that term—deteriorates?

If you've been around the bedside of someone severely ill, you know the pressures on the family, the agony, the continuous vigil. In the back of some people's minds are questions about the cost: How are we going to pay for all of this? Friends and relatives are grief stricken over the pain their loved one endures. They're tired, exhausted. A doctor appears in a white coat, bigger than life—a professional, committed to curing the sick. We're ready for him or her to tell us what to do in this terrible, agonizing moment.

Life and death become judgment calls, subject in some cases to ethics committees' determinations and hospital guidelines. But who decides what our ethics will be? If there is no truth, there are no true ethics, only prudential standards that reasonable people try to apply. So the best-intentioned doctors in the world have to make judgment calls, ever aware of the costs involved for the hospital in which they are staff members. Aware of the patient's suffering, pressured to handle as many cases as possible, embroiled in a quality-of-life matrix, the white-coated doctor becomes god, with nothing like God's wisdom.

Most of us refuse to think we are really measuring life on the basis of cost. We don't like utilitarian reasoning when we're forced to face it. There is something deeply, deeply wrong about this whole mindset, in which so many of us are already profoundly implicated. But there's that terrible voice in the back of our minds that says: I know what the right answer should be, but I'm sure glad that if I were in that situation, I'd have an out. So how does one answer Singer's seductive logic?

Not-So-Great Debate

Disabilities-rights activist Harriet McBryde Johnson made a valiant attempt to do so. Peter Singer invited Johnson to speak at one of his classes at Princeton and to debate him in an open forum, which she later described in a moving New York Times Magazine piece.

Johnson, a lawyer, suffers from a muscle-wasting disease and describes herself as a "jumble of bones in a floppy bag of skin." In her 40s, paralyzed in most of her body, Johnson weighs about 70 pounds. Her spine is a tightly reversing S-curve. She sits up in her chair by letting her ribs fall on her lap, with her elbows planted on her knees. This position has become natural to her, and she suffers no discomfort from it. Her life entails other restrictions, though. She can eat only purees, soft bread, and easily chewable fruit like grapes. She needs help getting dressed, using a bedpan, bathing, and doing morning exercises that keep her limber.

Johnson spoke first, building her case on the grounds that as a person with disabilities, she is a member of a discriminated-against minority and that the presence or absence of a disability does not define the quality of life. She described how much she enjoys riding in her wheelchair—the exhilaration of feeling the breeze blow through her hair.

Singer was, she observed, "surprisingly soft in his response." He reframed the issues almost clinically before opening the discussion to students. From time to time, Singer interjected his views. He asked if an "individual is totally unconscious and … we can know absolutely that the individual will never regain consciousness … assuming all that, don't you think continuing to take care of that individual would be a bit weird?" Johnson responded that caregiving can be a beautiful thing. She could not specify exactly why this should be the case, though, and her assertion left Singer blank. The nobility of caregiving could not survive Singer's argument that happiness is based on preference, and despite the powerful argument of Johnson's presence, Singer's arguments clearly won over the students.

The eerie thing about the whole encounter for Johnson was that she did not find Singer the neo-Nazi devil that her disabled friends had painted him to be on the basis of his writing. The classroom exchanges and those that followed at dinner with the faculty were, by Johnson's account, amazingly civil. She found Singer's verbal facility dazzling; he was so "respectful, so free of condescension, so focused on the argument, that by the time the show is over, I'm not exactly angry with him."

Despite herself, Johnson came away from their encounter with enormous respect for Singer. She writes that he is "a man of unusual gifts, reaching for the heights." She virtually applauds his "trying to create a system of ethics derived from fact and reason that largely throws off the perspectives of religion, place, family, tribe, community, and maybe even species." She sees him as taking "the point of view of the universe," concluding that his is a "grand heroic undertaking." His weakness, she argues, is his unexamined assumption that disabled people are inherently "worse off," which she described as prejudice.

In essence, Johnson did not disagree with Singer's fundamental premise, only with what constitutes a good life and whose preferences must be respected. Once she agreed that the issue is quality of life—that there is no objective standard, only subjective judgment about what constitutes a life worthy to be lived—she forfeited any chance of winning the debate.

The enchantment that Singer's benevolent-sounding reason worked on Harriet McBryde Johnson is a clear example of how we have fallen under the sway of the well-spoken, highly intelligent enemies of truth. If there truly is such a thing as evil, do you think it would present itself in its true character, as vicious and destructive? No. Most of the time, evil comes to us as the hand on the shoulder and the kind voice that says, "Let me help you."

Drawing on Life

Without a view of God, or at the very least a transcendent natural order, there is no intrinsic significance to life. Which is why Singer was so curious as to how someone like Johnson, who is as good an atheist as he is, could disagree with his entirely reasonable views. No one, no matter how skilled a lawyer, is going to be able to win an argument with Singer without questioning his Darwinian premise that life came about by chance. This is precisely what makes Singer and his kind so dangerous.

When it was about time to leave Max's school, Max showed me one of his drawings. It reminded me once again how important making art together has become for my daughter and Max. It plays a pivotal role in their communication, providing a bridge to Max's otherwise-unknown thoughts, emotions, and memories.

Every parent experiences anxiety about what a child may be thinking and feeling. Does my little boy's sudden dislike of kickball stem from a bad experience on the playground? Are my daughter's new friends the result of an unhappy rivalry among the old friends? Will my child ever tell me? With autistic kids, this universal problem is much, much worse. Max will often become suddenly uncooperative for absolutely mysterious reasons. He'll throw himself around the room, exhibiting an agony about which he's absolutely powerless to speak; he can't express in words what he's thinking and feeling.

My daughter, Emily, has discovered that if she draws for Max, supplying images that serve as bridges to his inner world, he is able to make sense of what's happening around him. She's able to connect Max's throwing himself around the room with his having a headache or being unhappy with an unexpected rearrangement of his room.

Through her drawings, Emily has had phenomenal success in helping Max understand things that happened to him when he was two and three years old, events that frightened him because he was unable to interpret their significance. Through the drawing he's able to ask Emily what these events were about and whether he needs to be afraid of them any longer. Emily takes a brush or crayon and adds a flourish to Max's picture, giving the piece a happy look. Max doesn't need to be haunted by the episode any longer. The two draw together in tears, celebrating their discovery and the new freedom it has brought into Max's life.

In a utilitarian accounting, such an experience is meaningless because Max's life is meaningless. Why, then, does Emily feel profound joy when she is drawing and talking with Max, reaching him at a deep level? Why can I say that Max has taught me ever so much more than I have taught him, as if Max is a gift to me? I don't want to be misunderstood here. Max's autism is not a good thing—it's part of the world's brokenness. Yet that brokenness has been used to enlarge my capacity to love. That's a very great gift. Paradoxically, Max has introduced joy into the lives of his teachers, his mother, his grandparents, and many others because of these costs, these sacrifices. How should one account for that?

How should Max account for himself, and why should he have to? Max is more than happy to be alive, thank you very much. Max knows a joy and wonder that puts me to shame. Why is that?

Let me just suggest at this point it's because the good life is not about the sum total of what we contribute to the world. It's about loving. Utilitarianism knows nothing of love. Love is the beginning and the end of the good life, however, and it's in love that our lives must be centered. Truth matters because without truth, love is unreal. It's just another sentimentality. But we know in our hearts that within us is a love that calls out to the Love that we believe formed the universe. Otherwise, we're lost. Failing to acknowledge this love beyond self caused the gifted Harriet McBryde Johnson to lose her debate with Singer. Without love, anyone would.

Charles Colson is a Christianity Today columnist, and author, with Harold Fickett, of The Good Life: Seeking Purpose, Meaning, and Truth in Your Life (Tyndale, 2005), from which this article is excerpted and condensed.

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