by Jeff Plude (February 2023)
Untitled, Baruch Elron
It’s been five years this month since my brother Mike died, so I finally dug out the autopsy report and read through it for the first time, though of course I knew in general what it said.
He was my little brother not only in years but size—fifty inches tall (about the same height, incidentally, as the engineering “Wizard of Schenectady” Charles Steinmetz, a hunchbacked dwarf, whom I once wrote a newspaper story about). Though he was relatively heavy, 118 pounds, he weighed a mere three to four pounds at birth.
The official cause of death was cardiac arrhythmia due to myocardial fibrosis—his heart tissue had hardened and thickened until the blood supply was finally cut off. Which is ironic because his heart was much softer in a figurative sense, more full of love, than a run-of-the-mill human’s.
Mike was not the kind of Down syndrome person that I often see today on social media, who may work a menial job of some sort at a retail store or fast-food restaurant, and sometimes is even a model or actor. He was also born with a permanently dislocated hip, one of the many complications that can accompany nondisjunction of the twenty-first chromosome, or having three copies instead of the usual pair, which I learned about in reality much sooner than my classmates in sophomore biology. He used to scoot around on his butt on the oak floor of our living room until he was about seven or eight years old and graduated to a wheelchair, which he became quite adept at maneuvering. He had a definite and keen personality, even a way with words. He often came up with his own versions, which everyone in his personal orbit seemed to learn and that oddly seemed to fit. He also had a well-developed sense of humor, especially when it came to teasing my wife, who had known him for over three decades and whom he adored.
Five days from turning fifty-two years old, he was declared dead at 3:15 a.m. He was a longshot from the beginning, as I said in his eulogy, and outlived the odds by a country mile (he loved country music).
He was born the day before Valentine’s Day in 1966, seven years before the infamous Roe v. Wade 7-2 decision, which the Supreme Court gloriously and miraculously overturned last year. It was fifty years ago last month when it was first decided, and opened the door for abortion to be routinely performed across the entire United States. Now it has been sent back to the states, and a dozen have since passed legislation that outlaws the barbaric procedure except in cases of incest, rape, and danger to the life of the mother. Though my parents were Catholics in name only, I’m certain they would never have considered such an option even if it had been available, not to mention the prenatal testing that’s now routinely done to offer, perhaps suggest, such a heartless solution.
Before Roe v. Wade there was eugenics, which in my view is the flip side of abortion. The so-called science of good breeding grew naturally out of Charles Darwin’s books On the Origin of Species (1859) and The Descent of Man (1871). America, in fact, became the ideology’s most fertile ground. But once the Nazis championed it—inspired in a large measure, their defense claimed at the Nuremberg trials, from the American Supreme Court’s 8-1 ruling in 1927 in favor of forced sterilization of the “feeble-minded” and other undesirables—another tactic had to be found. And the replacement was even more efficient. Abortion has some distinct advantages over sterilization from a public policy perspective: it didn’t require legal force but mere propaganda, the promotion of “individual choice,” which is much more subtle, more personal, and just as effective if not more so for its proponents’ endgame. And unlike sterilization, which prevents conception and also included men, surgically ending a pregnancy involved only women.
Of course, this was nothing new in the world (I almost said civilization). The ancient Greeks, one of the progenitors of our western society, would abandon and expose children they considered weak and inferior to die a slow, excruciating death. Infants, no less.
But nobody, no matter what a person lacks, is considered expendable in God’s eyes. And that life begins in utero, a person for whom God has a plan. As David exults in Psalm 139:
Thou hast covered me in my mother’s womb … My substance was not hid from thee, when I was made in secret, and curiously wrought in the lowest parts of the earth. Thine eyes did see my substance, yet being unperfect; and in thy book all my members were written, which in continuance were fashioned, when as yet there was none of them.
What could possibly be the purpose of somebody like my brother Mike? Oliver Wendall Holmes Jr. saw none. He didn’t even see a person. “Three generations of imbeciles are enough,” he mocked, writing for the Supreme Court majority in Buck v. Bell—one of the crudest, cruelest, and most contemptuous public pronouncements from a position of power in American history. No wonder the Third Reich, in effect, called Holmes as a witness in absentia in the war crimes trial. He might’ve been a Civil War hero and a legal scholar, but he was also a smug, shameless bully. According to the 2016 book Imbeciles by Adam Cohen, Holmes said in a letter to a friend that no decision gave him so much pleasure. Holmes was eighty-six at the time: so much for older but wiser.
But not all judges are as inhumane and unenlightened as the vaunted Holmes.
Over three centuries before the dishonorable Judge Holmes, Michel de Montaigne, a retired magistrate, in his essay “On a Monstrous Child” describes seeing a toddler with a conjoined, partly formed twin brother, whose parents were showing them “to get a penny or so.” He also mentions a thirty-year-old shepherd who has no genitals, “only three holes by which he continually makes water,” yet has a beard and desires women. Unfazed, Montaigne finds nothing unnatural in all this:
What we call monsters are not so to God, who sees in the immensity of his work the infinity of forms that he has comprised in it; and it is for us to believe that this figure that astonishes us is related and linked to some other figure of the same kind unknown to man. From his infinite wisdom there proceeds nothing but that is good and ordinary and regular; but we do not see its arrangement and relationship.
People like my brother Mike, in Montaigne’s eyes and mine, are “good and ordinary and regular.” So who are the true monsters—the unfortunate people who were born without the “normal” endowments of life, or the people who sneer at and despise them like Holmes?
Montaigne’s expansive and generous view of life can seem counterintuitive, especially in a godless age of entitlement and gene editing. While many would ostensibly censure Holmes for his boorishness, they wouldn’t disagree with his sentiment in general. The fact is that before the ruling in Dobbs v. Jackson Women’s Health Organization in June, about two-thirds of American women aborted the child they were carrying who showed signs (prenatal tests aren’t conclusive) of having Down syndrome. In some countries in Europe that figure isn’t far from 100 percent.
What is God up to with all this? the nonatheists among us might ask, or even demand to know. Or as I asked myself when I was a kid, at least unconsciously: why me or us, our family?
Standing in my black suit at the head of my parents’ graves on a sunny and windy spring day, I started my eulogy for my little brother Mike with Lazarus—not the Lazarus Jesus raised from the dead but, as described in Luke 16, “a certain beggar named Lazarus.”
This Lazarus, Jesus says, used to lay at the gate of a rich man’s house every day in the hope that he could eat “the crumbs which fell from the rich man’s table,” and he was “full of sores” that “the dogs came and licked.” Interestingly, though we are told that the rich man is clothed in “purple and fine linen” and eats “sumptuously” every day, Jesus doesn’t tell us his name. This is exactly the opposite of what happens on earth. It’s the beggars, the “imbeciles” and nonentities in the world system, who aren’t worth a name. Only the powerful, that is, the rich, are given that honor.
However, when Lazarus dies, the tables are turned. Jesus says angels carry him straight to heaven, but when the rich man dies he finds himself in the flames of hell. “Father Abraham,” in whose bosom Lazarus lies after death, tells the rich man across the “great gulf” that separates heaven and hell: “Thou in thy life receivedst good things, and likewise Lazarus evil things; but now he is comforted, and thou art tormented.”
The rich man was suffering for eternity not because he was rich, but because he was rich and godless, ignoring the plight of people like Lazarus. In other words it’s Lazarus and my brother Mike et al. who are truly rich—not just spiritually but physically in paradise—forever. As Jesus says elsewhere, the first will be last and the last first.
Which leads me to my other belief based on a half century of living with, caring for, and interacting intimately with a brother who had Down syndrome. I believe that God may have sent people like Mike as his special covert agents of a sort, to test us and see how we treat them. With compassion, endurance, and humanity? Or with derision, disregard, and selfishness like the rich man, like Oliver Wendall Holmes Jr., and for that matter like the doctors who kill such babies instead of delivering them? Paul writes in his first epistle to the Corinthians that God uses “the foolish things of the world to shame the wise,” and “the weak things of the world to shame the strong.”
But this is not to sugarcoat the matter. Our family life wouldn’t make a very good Hallmark movie, I’m afraid.
I don’t remember when I realized that Mike was not going to be a normal brother. Did I ask about his slanted eyes? My parents never talked about it. One time as an adult, long after my father had died, I asked my mother how they felt when Mike was born, and she said only that they cried at lot. “Dad too,” she added.
There were few support services in those days, but there was a local school Mike could attend. I remember seeing Geraldo Rivera’s expose on Willowbrook on TV in 1972, the notorious state-run institution for the mentally retarded on Staten Island, and wondered if that’s how Mike would wind up someday. New York Sen. Robert F. Kennedy called it a “snake pit.” There was never a question that I remember about sending Mike somewhere like that. The unspoken vow seemed to be that for better or worse, he was ours and we would take care of him.
My mother, who had never worked outside the home after she got married, threw herself into taking care of Mike and let most everything else go, including me, the only other child in the house. At my mother’s funeral, which was a few years before Mike’s, the funeral director, a childhood friend of mine, surprised me by mentioning it to me. But she was the one who had to change Mike’s diapers until he was nine or ten and then after that the occasional messes in his underwear, and lift him onto and off from the toilet. I also used to lift him out of his wheelchair and into the car or van (my wrestling training came in handy), as did my father. A blue-collar guy, my father threw himself into work and eating and drinking and being as merry as he could.
Mike even had to be taught how to drink out of a straw. But that wasn’t the half of it. When he was around eight he had three major operations to try to mend his permanently dislocated left hip and leg, which was several inches shorter than his right leg. One of those times my father drove himself and my mother and sometimes me two hours roundtrip every other day for weeks to the rehabilitation center to visit Mike, my father having to be back by early afternoon to go to work. For six months Mike was in a cast from his tiny armpits down to his toes. I never saw anyone so cheerful in such a dire condition. That summer my parents moved his bed right into the living room so he wouldn’t be alone in his bedroom. He was truly the center of the house.
After Mike recovered, the doctor prescribed custom leg braces and shoes for him and instructed my parents to help him take steps. They, or I should say my mother, did it a few times and then gave up. I was in junior high, just entering my serious sports phase when I thought practice was a panacea, and I went on a mini-campaign to make Mike “normal,” or at least as much as possible. While I wanted to help him walk, it certainly wasn’t pure altruism.
In a similar way, when his school sent home flash cards to teach him to read and say written words, I also took things into my own hands. He learned a few words and phrases, but then started to go backward. Everything seemed backward with Mike. I finally gave up, resigned to the truth: there was no improving Mike’s condition, only enduring it. Maybe my parents didn’t have the heart to tell me and let me discover it on my own.
People in the neighborhood and my school friends never made fun of Mike, at least within my notice. Other people were not so nice. We were out at a nicer restaurant once and my mother was cutting Mike’s food into small pieces and Mike would say things, a little louder than normal, in his clipped idiosyncratic words, and this older woman kept staring at him. I couldn’t stand it any longer and looked at her and said, “What are you looking at?” “Hey, hey,” my father said to me lowly in his stern way. “Never mind.” He seemed to be saying you better get used to it because inhumanity is everywhere and if you fight it that’s all you’ll be doing.
In the last fifteen years of his life Mike lived in a group home and had many more health problems—a narrowing of his spine that paralyzed one of his arms and almost killed him, testicular cancer, cataracts, stones in his prostate, and a broken leg. As the nurse at his group home, who was not young and had surely seen her share of patients over the years, told me and my wife: “He’s a tough little bugger.”
We had our share of laughter and joy too. My father eventually bought a motorhome when I was in junior high, and he and my mother and Mike used to go in it to campgrounds and parades, the latter of which Mike especially loved (and I especially hated, so most of the time I didn’t go with them). In later years my wife and I used to pick him up at his group home and take him out for a pizza lunch and then a long ride, the three of us singing along to Hank Williams and Willie Nelson and his other favorites. We even took him to a country music roadhouse, and he danced from his wheelchair with a young woman (he loved women with long hair, the younger the better).
I used to wish that Mike wasn’t mentally and physically disabled, and though it was natural to think this I eventually came to realize it was part of who he was. At the same time I knew that there was much more to him than people imagined.
I’m not alone in that general sentiment. Charles de Gaulle believed the same thing about his daughter Anne, who was born with Down syndrome and lived at home with her parents and older brother and sister. “There was something very special and very touching about this little human being,” her father told an aide, according to the 2018 biography De Gaulle, “and I have always had the feeling that if she had not been as she was, she would have been a rather remarkable person.”
People with Down syndrome have a way of penetrating steely hearts like no one else can. The imposing stone-faced general, a living symbol of the French Resistance and resilience during World War II, used to sing and dance for his “poor little Anne,” as he called her, who couldn’t speak very well. But he told a regiment chaplain (again as quoted in De Gaulle) that though her birth was trying for him and his wife, Yvonne, “believe me, Anne is my joy and my strength. She is the grace of God in my life.” When she died in 1948 at twenty, he told a parish priest he was “annihilated.” As de Gaulle and his wife left Anne’s burial he said to her: “Now she is like the others.”
When he died in 1970, the former president of the Fifth Republic was buried next to his very different but much beloved daughter.
Indeed, unlike the unrepentant race-obsessed Aryans and their followers, Mike and Anne, according to the Bible, now have perfect bodies and are without pain, tears, or sorrows. Jesus told his disciples not to forbid the little children from coming to him because “for of such is the kingdom of heaven.” Many Christian theologians believe, as I do, that this includes adults who are mentally disabled as well as the children who never made it out of their mothers’ wombs.
With the anniversary of Mike’s death approaching, I realized there was one last thing I hadn’t done. For some reason his year of death hadn’t been inscribed on the gravestone. His former body lies right next to my mother and father.
“T’ank you, Jah” was the last thing Mike said to me, when my wife and I dropped him off at his group home after an outing. My name, as I recall, was the first one he ever spoke. On occasion he has talked fluently to me in dreams in a way he couldn’t when he was on this earth (my wife has had dreams of the same kind). He was a lot more thoughtful than many others I can think of, some of whom wear black robes for a living.
Now it’s my turn to say thank you to him. Someday I plan to do it in person.
Table of Contents
Jeff Plude is a Contributing Editor to New English Review. He was a daily newspaper reporter and editor for the better part of a decade before he became a freelance writer. He has an MA in English literature from the University of Virginia. An evangelical Christian, he also writes fiction and is a freelance editor of novels and nonfiction books.
Follow NER on Twitter @NERIconoclast