The first time I caught a glimpse of the spiritual was while I was recovering from the serious bout of depression that followed the deaths of my parents — my father in 1985, my mother in 1988. I couldn’t define it, couldn’t put my finger on it, couldn’t even say when or where, never mind how. But it was real, and I stopped calling myself an agnostic.
The second time was in the spring of 1993, not long after Becky had come home from the hospital. Sometimes in the evening, Tim — “Timmy” then — would put a pillow in my lap while I was sitting on the floor, take a few steps back, and then make a running leap on top of me. Becky thought this was hysterical. Her eyes and mouth would open wide, her head would shake, her face would turn red, and out through her trach tube would come this nearly silent, breathy laugh.
After months of being an object, of having things done to her, she transformed herself before my eyes into a subject — a fully autonomous person, a little girl who, despite the trach tube, the oxygen tank, the suction machine, the nurses, and the piles of paperwork we had to deal with to keep all of that coming, had a mind of her own, and a very definite idea of what was funny. Her birth, and Tim’s, had seemed miraculous, of course, but this was a rebirth — a rekindling of the promise that we’d seen those first few months and that had all but disappeared during those weeks in the hospital.
At a few minutes before ten-thirty on the morning of Sunday, April 11, 1993, we wormed our way into the back of the Northshore Unitarian Universalist Church and squeezed into the handful of remaining seats. Tim squirmed like a typical two-year-old. Becky was propped in her basket between Barbara and me, a clear plastic tube running from the mask over her trach to a portable oxygen tank on the floor, a metal-and-plastic contraption that was about the size of two large shoeboxes and that was transported by means of a shoulder strap.
Becky had been home for less than a week. There was a hint of spring in the air, and we were determined to resume as normal a life as possible. Like many parents of our generation, Barbara and I had been talking for some time about finding a church in which to raise our kids. Given our divergent religious views, the local Unitarian Universalist church seemed like a good place to try. For one thing, the Northshore church was just a couple of miles from our house. For another, we needed a place that was as spiritually broad-minded as possible.
Barbara was a Catholic, although by 1993 she was looking for something else. I was the son of a non-church-going Unitarian mother and an ex-Catholic, agnostic father. They had sent me to an Episcopal church for a few years in a less-than-successful attempt to make my grandmothers happy. (My maternal grandmother, who trotted off to the Unitarian church in Middleborough every Sunday, didn’t care one way or the other. My paternal grandmother, on the other hand, was convinced that anything other than a Catholic upbringing would guarantee my eternal damnation.) Barbara and I had been married in a Catholic church by a priest and a Unitarian Universalist minister — the last time, except for weddings and funerals, that either of us had stepped inside a house of worship. A confirmed agnostic during my teens and twenties, by this point I was looking for something else, too.
We were impressed by what we saw that morning. It was billed as an “Easter-Passover” service. As we were soon to learn, the church was home for a number of mixed Jewish-Christian couples, and since Unitarian Universalism espouses no particular creed, it was natural to pay homage to both. The highlight was an African folk tale acted out by the children of the church, which also spoke to something emblematic about UUs: we are overwhelmingly white, and liberal guilt over that fact is one of the denomination’s defining characteristics. It so happens that the current president of the Unitarian Universalist Association, the Reverend William Sinkford, is African-American, but it remains a church influenced far more by Ralph Waldo Emerson and Henry David Thoreau than by either of the Reverends Martin Luther King.
One thing we did not do that day was stay until the end of the service. This was Becky’s first trip away from the big oxygen tank at home, and every few minutes we looked anxiously at the gauge on the portable unit. Not long after eleven o’clock, we could see that the tank would soon be empty if we didn’t get out of there. So we packed up our stuff, headed back to the car, and drove home. We later learned that the gauge on the tank was not working properly, and that there was more oxygen remaining than we’d thought. So we were able to return in the following weeks. We have been members ever since.
Because we live in a culture that encourages a view of God as someone who listens to our appeals and then decides whether to bestow favors upon us or torment us, the arrival of a child with a disability — any disability — can spark a crisis of faith. I have heard of people who literally ceased to believe in God because their child, or their grandchild, was diagnosed with dwarfism. Their reasoning: A loving God would not do such a thing. That’s bad enough. Worse is when disability is viewed as a sign of divine disapproval.
I recall a conversation I once had with my mother when I was quite young. The teenage daughter of a neighbor had had a child out of wedlock, and the baby had some sort of disability. I can’t recall what precisely the disability was, but it was something like a cleft palate or a clubfoot — in other words, a physical difference that would not cause overwhelming impairment but that was very visible. Apparently the neighbor had told my mother that her mother — in other words, the baby’s great-grandmother — had said that the disability was God’s punishment for the teenager’s wanton sexuality. My mother was shocked that anyone could say something so hurtful and so hateful — and that this woman could actually believe that an innocent baby would be maimed by a vengeful God for the sole purpose of sending a message about the penalties of sin. Thus at an early age did my mother introduce me to two important concepts: that disability is just one of those things that sometimes happens, and that some people hold some exceedingly peculiar ideas.
This kind of thinking may not be as prevalent as it was a generation or two ago, but the notion that disability is a form of punishment persists. When Becky was born, Barbara wondered if she hadn’t eaten enough of the right things, or had eaten too much of the wrong things; or if the treatments she’d taken to get pregnant and to reduce the chances of a miscarriage might have been the cause. I told her that feeling guilty was a waste of energy. We later learned that achondroplasia is tied to the father, especially to advanced paternal age; I was thirty-five when Becky was conceived, which, geneticists say, qualifies as advanced. And no, I didn’t feel guilty.
Wondering about nutrition and fertility drugs and paternal age is a new twist on a very old theme. Throughout most of history, disability has been viewed as a sign of some sort of heavenly intelligence, evidence that God is trying to send us a message. All too often, it is seen as proof of moral failure — whether it’s a failure to pray correctly, to live correctly, or, now, to eat correctly. It’s a viewpoint that is not just wrong, but dangerous — dangerous to my daughter, dangerous to all of us. For it is one of the principal means by which we identify disabled people as the Other, as being somehow morally responsible for their differences, and are therefore defined by — and dismissed for — those differences.
This is not a mere theoretical or philosophical consideration, for it shapes how we interact with the disabled — whether we put them on display, treat them as objects of pity, organize our charitable efforts around them, or cut back on funding for their medical care during times of economic uncertainty. Our most deeply held beliefs about disability, rooted in religion or in such New Age offshoots as the cult of fitness, govern how we treat real people with real physical differences. As I write this, the Commonwealth of Massachusetts is making plans to eliminate health coverage for some fifty thousand adults who are what is euphemistically called the “long-term unemployed.” You can be sure that people with some sort of disability are disproportionately represented in this group, whether it’s mental illness, mobility problems (prosthetics are among the items that will no longer be available), or some other difference.
The state does face a genuine budget crisis. But at the root of these proposed cuts is the idea that buying artificial legs for poor people isn’t something that we’re obligated to do. Rather, it’s something we do out of the goodness of our hearts, and we can’t be expected to raise taxes on corporations or wealthy people so that we can keep on doing it in the midst of a recession.
This moral position would be unimaginable if it weren’t for its unspoken, unconscious corollary: It’s their own fault.
The idea that disability is a sign of God’s disfavor can be traced back to the Bible, to at least Leviticus, in which God specifically forbids people with a wide range of physical deformities and maladies — including dwarfism — from serving as priests. The relevant passage in the King James version bans from the priesthood “a blind man, or a lame, or he that hath a flat nose, or any thing superfluous, or a man that is broken-footed, or broken-handed, or crookbacked, or a dwarf, or that hath a blemish in his eye, or be scurvy, or scabbed, or hath his stones broken.” This prohibition helped establish a Judeo-Christian orientation toward disability that is ambiguous at best, hostile at worst. Subsequently, American and Western religious attitudes toward disability have been shaped primarily by Christianity. But as is so often the case with religion, it is left to us to decide which interpretation we wish to embrace. The liberal Protestant theologian Martin E. Marty lays claim to an enlightened Jesus, writing,
I like the matter-of-factness of Jesus when they asked him about the man born blind; Jesus says, “Did he sin or did his parents, you ask me? He was born blind. Things just happen.” It rains on the just and the unjust alike. [Marty’s emphasis.]
But though it’s comforting to think of Jesus as having a modern attitude toward the disabled, it’s unlikely that an itinerant Jewish preacher who lived two thousand years ago actually would have held such views. And there is much evidence to the contrary. Take, for instance, this passage from John:
As he walked along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him.”
Now, it’s hard to know exactly what to make of this. The Reverend John W. Yates II, an Episcopal priest from Falls Church, Virginia, writes that Jesus is specifically rejecting the notion that the disabled are to blame for their condition. “He seems to be saying: ‘Rather than looking backwards, let’s look forward and ask what good thing might possibly come out of this,’” Yates writes. Yet Jesus also appears to be claiming some sort of special status for the disabled. Yates quotes from the New Revised Standard Version of the Bible; but in the New English Bible, whose editors claim is a more authoritative translation, Jesus answers his disciples that “he was born blind so that God’s power might be displayed in curing him,” a more explicitly utilitarian interpretation. Jesus spoke in metaphor and allegory and parable, and maybe this was the only way he could teach his followers that the disabled are not to be reviled. And of course, it’s better to be exalted than damned, although either makes it difficult for a disabled person to lay claim to being fully human.
The disability historian Hugh Gregory Gallagher has a more malign interpretation of Jesus’ ministry, writing, “Even the wise and gentle Jesus said to the blind man, ‘I have healed you, go and sin no more,’ implying, thereby, that sinning has brought on his blindness.” Gallagher brings this frame of reference up to date by noting that gay people with AIDS are sometimes blamed for their illness because of their sexual activities, and that others with genuine maladies are dismissed by doctors who attribute their problems to psychosomatic causes. These are all variations on the same theme: It’s their fault.
In our society, examples of John Yates’s and Hugh Gallagher’s interpretations are both easily found. That is, disabled people are either elevated as having special status or they are dismissed as having been singled out because of some innate shortcoming. In either case, the disabled person is an object, not a subject, someone who is acted upon rather than an actor in his or her own right. What we see all too rarely is the acceptance described by Martin Marty, taking the disabled as they are, fully human, with all of the strengths and weaknesses and hopes and desires and despair as anyone else.
One Columbus Day, we spent an afternoon at the Topsfield Fair, an annual event on Boston’s North Shore featuring farm exhibits, games, and carnival rides. Near the end of an enjoyable day, I handed Becky a ticket so that she could take one more turn on a kiddie roller-coaster. I watched as she made several attempts to give her ticket to the grizzled old man who was operating the ride. He wouldn’t take it, and I was afraid he was going to throw her off for not making the minimum height requirement, even though she’d been riding it all day without incident and even though I knew she was — just barely — tall enough. But he let her on, and she took several spins, laughing and waving as I waved back. She got off, still clutching her ticket. “I tried to give it to him,” she told me. “It’s all right,” the man gruffly interjected. “I have a daughter who’s handicapped.”
What could I do, other than say “thank you” and move on? Fortunately the exchange seemed to elude Becky. But I was stunned. My daughter was getting charity at an amusement park merely because she was different-looking. And she was getting it from someone whose own life experience should have taught him that most disabled people would rather stand on their own two feet, whether they’re able to do that literally or just figuratively. His use of the word “handicapped” was in itself interesting. Though the oft-told tale that it derives from a beggar’s “cap in hand” appears to be a myth, the real etymology is no less significant. It comes from an old-fashioned game of chance known as “hand in cap,” a game whose complex rules led to the modern meaning of handicap: to give an advantage to lesser competitors in games such as golf and horse-racing in order to level the playing field. Apparently my perfectly healthy, beautiful daughter could not enjoy a level playing field on that particular day without being given a free ride on a roller-coaster. She tried to act, making several attempts to give her ticket to the operator. Instead, she was acted upon.
Religion — or, rather, a specific way of thinking about religion — was at the root of what happened at the Topsfield Fair. It is an attitude that attained its full flowering in the nineteenth century. According to Peter Hall, a historian of philanthropy, Americans thought of the disabled as having been created by God so that others could practice their Christian virtues. Charles Dickens’s sentimental A Christmas Carol was wildly popular in the United States of the 1840s, and its most popular character, Tiny Tim, was an object of pity. The disabled were seen as cut off from normal human desires — especially sexual urges — and to have almost a holy aura. “They have a purity about them which people feel they need to be connected to in some way,” Hall told the documentarian Laurie Block, founder of the online Disability Museum, several years ago.
Block herself, who has a daughter with spina bifida, has talked about visiting the American Antiquarian Society in Worcester and finding “more than two hundred tales of moral instruction,” written between the 1820s and the Civil War, about children with various disabilities, such as deafness and blindness. She recounts one story about a girl whose leg is to be amputated and who is lamenting her fate. (This was before anesthesia, mind you.) The voice that the girl hears in her head asks of her, “Is this the way you suffer the will of your Lord?” In the end, she pulls through with the support of her Sunday-school teacher. The message, Block says, is that children must be submissive and be willing to bear terrible pain. Once the child accepts that suffering, “he or she becomes worthy of God’s grace and of charity.”
Becky’s experience with unsolicited charity notwithstanding, the tenuous relationship between disability in general and dwarfism in particular makes it hard to discuss its religious aspects in a way that is meaningful. Laurie Block didn’t say so, but I seriously doubt that any of the two hundred children’s tales she reviewed involved dwarfs. According to the Bible, Jesus made the blind see, the lame walk, and, in at least one instance, the dead spring back to life. But if he ever made a dwarf grow, there is no record of it. In an odd kind of way, Leviticus was millennia ahead of its time for categorizing dwarfism with other disabilities. For most of recorded history, the Tiny Tims of the world are worthy of our sentiment, but dwarfs are seen as wonders of nature, aberrations, freaks. Dwarfs are simultaneously part of and apart from disability culture, a duality that continues to this day.
But though people can argue over whether dwarfism is, in fact, a disability, there is no doubt that its complications can cause disabilities — and that those problems can change the way others view his place in the universe.
To gain some perspective, I spent a day with Susan and Curtis Forsley at their suburban home in Wells, Maine. Susan, who was forty-four at the time that I interviewed her, is a pleasant, intelligent woman of deep religious convictions. Curtis, nine, is a happy, active boy with achondroplasia who faces daunting challenges: he’s already had brain-stem and spinal-decompression surgeries, and he also has Asperger syndrome, a type of autism that his mother believes may be related to the fact that his brain stem was being squeezed in utero and during his first months of life. Susan’s husband and Curtis’s father, Alex, is a merchant marine and was away at sea during my visit.
Curtis was still recovering from his most recent surgery, and Susan had to ask him continually to stop jumping around — an order that any nine-year-old would have a hard time with, never mind one who is locked into the repetitive behavior patterns of Asperger’s. Curtis’s short stature has always been secondary to his medical needs. When he was four months old, doctors in Maine found that his foramen magnum was compressing his brain stem so tightly that he was on the verge of quadriplegia. He had a significant amount of hydrocephalus, too. He needed surgery immediately, the Forsleys were told — and, oh, by the way, they learned that their son was a dwarf as well.
“When we found out about the achondroplasia, it was a life-or-death situation, so all we cared about was our little baby being alive,” Susan told me. “The dwarfism piece — as far as the social implications of that — we really haven’t dealt with as much as we’ve dealt with the medical stuff. Now we have the autism piece. I think the autism piece is going to be harder to deal with than just the social dwarfism stuff. We’re going from medical crisis to medical crisis, hoping to keep our baby alive and hoping to give him the best quality of life that he can have.”
Asperger’s is considered a high-functioning type of autism, and Curtis comes across as a smart kid. While his mother made us lunch, we watched television, and he explained the finer points of SpongeBob SquarePants to me. But some of his behavioral patterns are clearly inappropriate, and Susan wonders how independent he’ll ever be. He flaps his arms. He has a hard time making eye contact. When he gets agitated he chews on electrical cords, or licks the floor or the kitchen counter. Once, she said, he even started licking another kid’s hair during a church service.
Yet, if anything, these challenges have only deepened her religious faith. She told me that before she and Alex even knew each other, she worked for a time with Wendy Ricker — the mother of my friend Ruth Ricker — and thus knew where to turn after Curtis was diagnosed with dwarfism. “Divine intervention,” she said. As for all of Curtis’s various medical needs, and Alex’s frequent absences, she told me that she never could survive if it weren’t for the support provided by the Congregational church to which she belongs and which has come through with everything from meals to prayer groups.
I then asked her what I knew was a delicate question. If you think it’s wise to pray to help Curtis, why do you think God did this to him in the first place? Her response: “I don’t think he did this to him in the first place. I guess my belief — I’ve never questioned why, I never did. And the way I conceptualize it in my mind is that Curtis’s soul was out there, waiting for somebody. And I feel chosen. I feel that God chose Alex and me as the best parents for Curtis. That, I guess, is my philosophical belief. That everybody has their cross to bear, everybody has something, everybody is a little different.” She added, “There’s a whole plan that we have no idea about, you know what I mean? A lot of people think, oh, you’re too much of a Pollyanna. I’ve had a lot of parents say you’re too sweetsie-sweetsie. But I’ve been there in real dark times, and I feel God’s blessed us with this beautiful guy, and he’s helped us. It is a challenge, but I wouldn’t have it any other way. I really wouldn’t.”
Susan Forsley’s religious beliefs are obviously heartfelt, and she voices them with real conviction. They are not wrong — for her. For me, though, it makes no more sense that an all-powerful God would seek out unusually good parents to care for disabled children than it does that an all-powerful God would inflict disabled children on sinful parents in order to punish them. These two beliefs are, in a sense, not terribly different from one another. Each starts from the same set of religious assumptions, but one takes a positive spin, one a negative.
Closely related to that is the aphorism that God never burdens any of us with more than we can handle. But this is obviously not true. I recently looked up an article that had made a deep impression on me years earlier. It appeared in the New York Times in 1995, and it related stories told by tens of thousands of refugees who were fleeing Bosnia in order to escape rampaging Serb forces. The refugees talked of mass rapes and murders, of entire families being killed. A woman who was about twenty years old made it to a refugee camp only to hang herself during the night. Another woman, eight months’ pregnant, said, “People are beginning to go mad, especially the children who saw their fathers and brothers killed.” If there is such a thing as an all-powerful, all-knowing God, clearly he burdened these people with more than they could handle. Stories such as these can be multiplied over and over, both on a macro scale (the Holocaust, Iraq, Rwanda) and on a micro scale (a child dies shortly after birth, a teenager is killed in a car accident, a family is wiped out in a house fire). Couples divorce. People go insane, or commit suicide.
I guess God works in mysterious ways.
If the idea that God would visit disabled children upon sinners is monstrous (and it is), or if the notion that he would choose special parents to raise disabled children is illogical (if he’s that powerful, why did he create disabled children in the first place?), then are there any good, sound alternatives to consider?
Is there a genuine spirituality that does not assume the existence of an all-knowing, all-powerful God? Or is atheism, or its more intellectually respectable cousin, agnosticism, the only answer?
I asked the Reverend Paul Stevens Lynn, the pastor of Christ Lutheran Church in DuBois, Pennsylvania. Steve Lynn, who was forty-nine years old when we spoke, is an achondroplastic dwarf, one of the few little people in the United States — and, no doubt, the world — to serve as a member of the clergy. At four-foot-six, he is a foot shorter than his average-size wife, Lois Laine. According to Lynn, what’s missing from the disability-as-punishment/disability-as-gift conundrum is the notion of free will. “God doesn’t cause me to be a dwarf, or you to have had that accident and now to be a paraplegic, or your husband to have just died, or your child to commit suicide,” he said. “Most of the time he allows those things to happen. Sometimes he intervenes, and that’s called a miracle.” He added, “God didn’t cause me to be short. He allowed it to be. It’s a difficult thing, but he didn’t cause it. He loves me as I am, he’s sorry for my pain, and he gets me through. He is a loving God, but he loves you so much that he doesn’t control everything.”
Well, what of the idea that God doesn’t give people more than they can handle? “I would modify that,” Lynn said. “God doesn’t give anyone more than they can handle if they turn to him for help.” And what of the notion that Jesus said disability and sin are related, as Hugh Gallagher argues? “Jesus was saying that it was much more important for a person to be forgiven sins than to be healed physically. They’re not related,” Lynn replied. “The real healing isn’t the physical affliction. The real healing is the forgiveness of sins.”
What Lynn is talking about, essentially, is the idea of God as love — God not as the cause of pain, but, rather, as the source of comfort during times of pain. This is similar to the God of Rabbi Harold Kushner’s classic 1981 book, When Bad Things Happen to Good People, an extended modern-day meditation on the Book of Job. “I no longer hold God responsible for illnesses, accidents, and natural disasters, because I realize that I gain little and I lose so much when I blame God for those things,” Kushner writes. “I can worship a God who hates suffering but cannot eliminate it, more easily than I can worship a God who chooses to make children suffer and die, for whatever exalted reason.”
I read Rabbi Kushner’s book after I received an e-mail from him and his wife, Suzette. I had made one of my semi-regular appearances as a media commentator for a local public-television show, Greater Boston, and the host, Emily Rooney, gave me several minutes to expound on my own book project. The Kushners happened to be watching that evening.
As everyone who has read When Bad Things Happen knows, Kushner was prompted to write it because of the death of his son, Aaron, from progeria, a genetic condition that causes dramatically premature aging. What few people know is that the Kushners for a time took part in Little People of America events, short stature being one of the effects of progeria.
When Bad Things Happen to Good People is a wise and humane book. To Kushner, the disabled are subjects, not objects; actors, not pawns that have been acted upon by a God whose purposes we cannot comprehend. I am far more comfortable with that concept of God than with a supreme being who uses — abuses, for there is no other way to put it — his power by treating disability as a way to dispense punishment and favors. And yet I cannot fully accept this interpretation either.
God-talk does not come easily or naturally to me. It is far simpler to write about what I don’t believe than what I do. Maybe it’s because my one deeply held spiritual belief is that uncertainty is the only certainty, and that what’s really important is to face the world with an open mind and an open heart, to be attuned to the possibility of things we don’t understand. That’s a hard rule to live by — I don’t think I’m very good at living by it, actually — but, to me, it’s the only rule that makes sense. I don’t believe in an all-knowing, all-powerful God who directs our daily lives, but that doesn’t make me an atheist or an agnostic, either. I don’t rule out a divine intelligence — or, more likely, a divine love — that courses through the universe. The Reverend Forrest Church, the minister of the Unitarian Church of All Souls in New York City, could be speaking for me when he writes,
The God I believe in now is different from the God I did not believe in when I was younger. . . . The God I believe in is neither male nor female nor any divine combination of the two. All this I know, or think I know. On the other hand, I do not know, and never will know, just what the God I believe in is. The God I believe in will remain a mystery.
I believe that the universe is largely defined — as the minister of our church, the Reverend Ed Lynn, puts it — by “randomness and chaos.” Far from being a bleak vision, I find this invigorating. Yes, it means things just happen. But it also means that each of us is in control of our own destiny, within whatever limitations we were born with or acquired along the way. Becky is not a dwarf because she deserves it, or because her parents are being punished, or because she or we have been chosen or singled out as somehow being special. Rather, she’s a dwarf because of a random genetic mutation. She’s got thirty thousand genes, and one is different from most people’s. She is a subject, not an object. She is her own agent, the shaper of her own identity. Her disability is not her fault or our fault. It just is.
I don’t think too many people would disagree with that, and yet, collectively, we act as though we are governed by the old superstitions. As I write this, the voters of Massachusetts have just rejected by a shockingly close margin — 55 percent to 45 percent — a proposal to do away with the state’s income tax. If passed, it would have required that $9 billion be eliminated from the state budget, most of that, you can be sure, to come from social and medical services. When the tax cut’s principal proponent, Carla Howell, a leading figure in the state’s Libertarian Party, was asked how such drastic spending cuts would be offset, her answer was that people would boost their charitable contributions. But charity turns every person with a disability into Tiny Tim: an opportunity for others to convince themselves of how good and pious and worthy of heaven they are.
Once, toward the end of Becky’s two years with a tracheostomy, I asked a social worker at our health-insurance company to help me figure out how much financial assistance we had received. It proved to be an impossible task, but in rough terms we came up with somewhere between a half and three-quarters of a million dollars. A lot of that was insurance money, especially for the weeks that she’d spent in the hospital. But a lot of it was public money, taxpayers’ money, money that you and I and everyone else had sent to the government, grousing all the while about politicians and bureaucrats and waste and fraud and abuse.
In two years, we never received less than seventy-two hours of home nursing care a week, and such care is expensive. It was paid for by the Kaleigh Mulligan program, a state-federal partnership that covers home health services for children whose families make too much money to receive public assistance via the usual routes. The program was named for a real girl in Massachusetts who had Down syndrome and a variety of Down’s-related ailments. And it saved our lives. Without it, Becky would have had to be placed in a chronic-care hospital, and we would have gone deep into debt. With it, not only could she live and grow and love and be loved at home, but the financial impact on us was minimal. The Kaleigh Mulligan program costs Massachusetts taxpayers about $8.5 million a year, less than it would take to put these children in hospitals. No, society can’t pay for everything, and choices must be made. But is there really any doubt what is the right choice when it comes to the care of disabled children?
It could easily have been otherwise in a culture in which the disabled and their families are seen as being somehow responsible for their own misfortunes, as having offended God, or as having been sent to inspire acts of Christian charity. What was available to us — good health insurance and a compassionate government that filled in the gaps — should be available to everyone as a matter of right, not charity. What makes that possible is a mindset that regards genetic diversity as something good, and that sees all of us as part of the same human family.