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    Made Perfect

    Whose lives count as fully human? The answer matters for everyone, disabled or not.

    By Peter Mommsen

    November 29, 2021
    8 Comments
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    • Colleen

      Thank you so much for this beautiful essay. My three-year-old grandson has Cerebral Palsy, and he is the most beautiful, joyful, brave human being I know. He inspires me to be the best person I can be, to always give sacrificially, to serve, and to help meet the needs of others who cannot care for themselves. I am horrified to read of Ugly Laws. I had never heard of this. It infuriates me. Thank God that we have been able to move past those, but still, we have such a long way to go.

    • Ann

      How wonderful that you were able to receive the powerful teaching which Duane had for you. An inspirational article which touched my heart.

    • David

      Sadly millions of children deemed 'life unworthy of life' have been brutally, painfully slaughtered in a world that says it wants to protect life.

    • Robert Allaway

      In her novel 'Persuasion', Jane Austen has an upper class character complain about the Royal Navy that it enables people of the 'middling' classes to rise above their station and many of its officers have disfiguring wounds that are upsetting in polite society. Both Austen and her readers would have been aware that both these points applied to the great national hero, Admiral Lord Nelson, who had risen from humble origins, and lost both an arm and an eye in the service of his country. This was a subtle but telling attack on such prejudice.

    • Russell Hoffman

      Thoughtful words to challenge once again my superficiality.

    • GLORIA JEAN BRADY

      Thank you

    • Christine Janis

      Whew.... i think we ought to read in order to be a little more sensitive to the obvious around us💞

    • David Rennicke

      As a minister in a middle class church in a middle class neighborhood in the middle of the United States, it has often been called to my attention, those who are not like us. How sad. Jesus calls all of us to love, no matter what the situation. Thank you Peter for reminding us of the beauty of all human beings.

    In San Francisco, California, in July 1867, Martin Oates, a Civil War veteran, became the first person to be arrested under a new city law banning people with obvious disabilities from appearing in public. Passed earlier that month, Order No. 783 made it an offense for “any person who is diseased, maimed, mutilated or deformed in any way, so as to be an unsightly or disgusting object, to expose himself to public view.” Oates had been paralyzed while fighting for the Union, becoming “a perfect wreck” and “half-demented,” according to the San Francisco Call. Despite his military service, Oates was jailed until he could be institutionalized in the young city’s almshouse, which was still under construction.

    San Francisco had enacted the new law after several years of complaints about an influx of poor newcomers: Chinese laborers, Italian immigrants, and Civil War amputees. As the Weekly Mercury editorialized, “San Francisco seems destined to become a ‘city of refuge’ for all the lazzaroni of the Pacific Coast. As one treads our streets, the eye is shocked at the frequent appearance of maimed creatures, whose audacity is only paralleled by the hideousness of their deformities. … Until the Almshouse is completed, some refuge should be found for these deformed ‘objects of horror.’”

    “Ugly laws,” as they would later be dubbed by disability activists, soon became popular in cities across the United States, just one prong of a broader push for so-called public hygiene. As Susan Marie Schweik recounts in The Ugly Laws (2009), US authorities sought to cleanse public spaces of people judged to be subhuman in one way or another. These laws went hand in hand with the racial segregation of public facilities, mandatory institutionalization for the physically impaired or mentally ill, immigration bans for the “unfit,” and the eugenics movement. In the words of the US Supreme Court’s 1927 opinion in Buck v. Bell, which upheld compulsory sterilization for those with “hereditary defects”: “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind.”

    The last city to repeal its ugly law, Chicago, only did so in 1974, the same year as the last ugly-law prosecution – of a homeless man in Omaha accused of having “marks and scars on his body.” Meanwhile, Buck v. Bell has never been overturned. While some sensibilities may have changed, the idea remains in many corners of society that those with disabilities don’t fully belong. That perhaps they shouldn’t count as genuinely human at all.

    cracked face of a marble statue

    Photograph from Sybilline Photography

    There’s a quote by Socrates that shows up on the walls of the kind of gym that nerdy guys work out in: “No one has a right to be an amateur in physical training. It is a shame for a man to grow old without seeing the strength and beauty of which his body is capable.” The quote is genuine, taken from a dialogue by Xenophon in which Socrates takes a young man, Epigenes, to task for letting his body go flabby. It memorably expresses the ancient Greek ideal that physical wholeness is connected to moral wholeness – the virtuous citizen was called kalos k’agathos, “beautiful and good.”

    It’s a noble ideal in a very limited way. And in its bad forms it has all too often turned deadly, casting those who do not measure up as incomplete Untermenschen. In the pre-Christian era, those with disabilities might be exposed as infants; in modern times, they have been targeted by eugenics, most infamously the Third Reich’s Aktion T4 euthanasia campaign, under which as many as 300,000 people deemed “life unworthy of life” were killed.

    Much has changed since then, thanks to the tenacious advocacy of the disability rights movement. Yesteryear’s hellish institutions have given way to customized educational programs and assisted living centers. Public spaces have been reconfigured to improve access. Therapies and medical technology have advanced rapidly in sophistication and effectiveness. Protections for people with disabilities have been enshrined in many countries’ antidiscrimination laws and in a 2007 United Nations convention.

    But these victories, impressive as they are, mask other realities – patterns of action and omission that collide awkwardly with our society’s avowals of equality in ways that few care to consider for long. Take for example two practices that have proliferated around the world since the turn of the millennium in discordant synchrony with the spread of disability rights legislation: prenatal testing and so-called assisted dying.

    Four years ago, Iceland made headlines for having “eradicated” Down syndrome, as one expert put it. In reality, of course, Iceland is eradicating not a syndrome, but the unborn children who have it. The country offers universal prenatal screening for chromosomal aberrations; almost all women who receive a positive test result choose abortion. Today, only one or two babies with Down syndrome are born in Iceland in an average year, usually because of false negatives. The numbers from other countries tell a similar story: a 67 percent Down syndrome termination rate for the United States, 90 percent for the United Kingdom, 98 percent for Denmark.

    When my wife and I were nervous parents expecting our first child in Germany, our midwife told us that the baby was due for the Down syndrome test. (Unlike most newspapers’ style guides, midwives tend to speak of “babies” rather than “fetuses.”) Somewhat obtusely, we asked her what modern medicine could offer if the test came back positive. Her eyes teared up when spelling out the obvious; it turned out that she was a devout Catholic, but was obligated to get us to sign a waiver if we turned down the test. We did.

    Prenatal chromosomal screening seems humane – what could be more caring than checking whether your unborn baby is healthy? Except that in this case there is no cure, just an invitation to end your child’s life. Whole medical systems have been methodically set up to enable you to do so.

    Why would loving parents, who in some cases desperately want a child, choose to abort a baby likely to have a disability? Many say they want to spare their child a life of suffering. Yet as disability activists point out, this reflects a false assumption that may largely result from misleading framing by doctors: as a group, people with disabilities, even profound disabilities, report a generally high quality of life.

    Another reason is economic: parents conclude that they can’t afford a child with disabilities, or that the demands of their jobs don’t leave them the time to give the extra care required. These pressures can be real, certainly for working-class parents in countries like the United States without much of a social safety net; such parents’ decisions to terminate may well be made under duress. It’s a poignant illustration of the central insight of the “social model of disability”: that lack of ability due to an impairment is caused less by the impairment itself than by the social and economic barriers that determine what kind of lives people with disabilities (and their families) can and cannot live.

    Yet money is not the whole of it, as indicated by the high rates of Down syndrome abortion in Nordic countries with generous healthcare and welfare systems. In fact, socialized healthcare can even work against people with disabilities, who in such a system are easily regarded as outsize burdens on the public purse.

    This is not just a theoretical fear. Public health providers around the world already now promote prenatal screening as a way to save money thanks to its success at nudging parents to abort children who would otherwise require expensive care. Behind the wonkish cost-benefit analyses lurks the same impulse that inspired 1930s Germany’s propaganda against “useless eaters.” Which serves as a reminder that eugenic policy has usually sought not only to prevent the “unfit” from being born, but also to hasten their deaths.

    In 2002, Belgium legalized euthanasia, the second modern country to do so (after the Netherlands). The Belgian law’s text limits euthanasia to the cases of people with “a medically futile condition of constant and unbearable physical or mental suffering.” It wasn’t long, however, before disability itself had become qualification enough, even absent a terminal diagnosis or physical pain. In 2013, twin forty-five-year-old brothers who were deaf chose medically assisted suicide after a glaucoma diagnosis indicated that they would become blind as well. In 2015, a thirty-eight-year-old with autism requested and received euthanasia after she broke up with her boyfriend. A 2020 report noted that in that year, fifty-seven assisted-dying deaths were of people with psychiatric disorders, and another forty-eight were of people with cognitive disorders; of the last group, forty-three did not have a terminal condition.

    Proponents of modern euthanasia emphasize that it is voluntary, an expression of the individual’s freedom of self-determination, in contrast to the involuntary eugenics of past eras. Yet in practice the line between the two is far from clear-cut. Belgium, to stick with that example, has expanded its laws to allow euthanasia for children, including those with disabilities, as well as for adults incapable of giving consent (the term is “non-voluntary euthanasia”).

    During the height of the first Covid wave in early 2020, when ventilators were in short supply, health authorities raced to develop criteria for which lives to prioritize. Some US states listed disability itself – not likelihood of survival – as a reason to deny care. As the writer Alice Wong asked in a Vox article at the time: “I’m disabled and need a ventilator to live. Am I expendable during this pandemic?” She went on to question the assumptions behind the pandemic care guidelines:

    Even the notion of “quality of life” as a measurable standard is based on assumptions that a “good” healthy life is one without disability, pain, and suffering. I live with all three intimately and I feel more vital than ever at this point in time, because of my experiences and relationships. Vulnerable “high-risk” people are some of the strongest, most interdependent, and most resilient people around.

    In the writing of disability activists, one name repeatedly surfaces as a representative of the view that such lives have less worth: the philosopher Peter Singer, whose 1979 book Practical Ethics argues that the value of a life is not based on whether it is human, but on the degree to which an individual possesses self-consciousness, rationality, and autonomy. Following this logic, Singer concludes that the parents of babies with severe disabilities should be able to end their child’s life not just before birth, but also afterward. Forty years of critique by disability advocates have not budged Singer’s position. As Katie Booth commented after interviewing him in 2018:

    His arguments are built intricately and beautifully, like a perfect mathematics equation, but at their core beats a single assertion, one that is still too difficult to concede: that this group of human beings aren’t really people.

    Many others, however, do concede this assertion, even if only tacitly; that, at least, is what widespread support for euthanasia and abortion in cases of disability strongly suggests. Millions who have likely never heard of Peter Singer – who might well recoil from his defense of infanticide, who may even consider themselves disability-rights allies – nonetheless agree with the core of his claim about which lives, when push comes to shove, ought to count.

    What explodes this claim, and this whole way of thinking, is the existence of people like my late friend Duane.

    Duane was twenty-one when I got to know him well, four years younger than me. Since he never learned to speak, and generally didn’t seem to understand words spoken to him, he likely wasn’t “self-conscious” or “rational” by Singer’s definitions. He certainly wasn’t autonomous: he couldn’t walk except for a few minutes at a time in a complex gait trainer that supported his back and knees, and he required a caregiver to assist him with eating, showering, toileting, and just about everything else.

    Duane smiling in the sun

    Duane Photograph by Marcus Mommsen

    For a while I was that caregiver. The opportunity came to me through a pastor in the Bruderhof, who suggested I give it a try at a time when I felt that much in my life as a community member had gone off course. Duane was then living with his parents, Jeremy and Mengia; their other kids had recently grown up and left the house. I moved in, and under the supervision of Duane’s doctor and a nurse, started looking after him 24/7.

    I’d never interacted with someone like Duane before. Like the people who wrote the ugly laws, I’d avoided people who looked like him. In reality, he was a handsome fellow with a radiant personality, as I’d realize in time, but what I saw at first was the contorted limbs, the painfully tight tendons, the often vacant expression, the uncontrolled movements resulting from brain damage caused by a lifetime of grand mal seizures. I soon learned to wake in the night at the change in his breathing patterns that indicated that another seizure was about to hit. Much of every day he spent in pain.

    Duane had no realistic prospect of ever gaining more physical ability. And yet it was an undeniable fact that he was fully a human being. After a few weeks I could read his moods, and there was no doubt he was happy when I showed up and he enjoyed spending time with me. The feeling was mutual. Once I’d learned the basics of his care, we started taking expeditions into the woods using his all-terrain wheelchair. He’d spend the bright afternoons lying on a pile of leaves underneath a sugar maple, often chuckling at the leaves drifting above him across the deep blue fall sky.

    Every now and then, at unexpected moments, Duane would catch my eye and fix me with a direct gaze. It was a look that pierced, earnest and disconcerting. Sometimes I thought it was a look of deep sadness; at other times it felt like a challenge from one who could see me as I really was. Or maybe it was just a question: “Who am I? Who are you?” In these moments it seemed as if we were on the verge of communicating, as if, but for just one tiny obstacle, the spark of comprehension was ready to leap between his mind and mine.

    I had spent most of my high school and college years imbibing the anxious creed of meritocracy, which not coincidentally elevates the same rationality and autonomy so prized by Singer. “You are the crème de la crème,” the college president had told us in freshman orientation, and I’d believed him – which meant believing that the worth of my own life, and other people’s lives, depended on achieving at a high level, developing one’s full potential, and earning socially valuable credentials.

    Now here was a guy roughly my own age for whom none of that made sense – whose life was as truly human as anyone’s, and perhaps even more coherent than mine. What’s more, though he needed help with care, he didn’t need me to meritocratically excel at being a caregiver. As far as I could tell, he was more interested in having a buddy.

    When December arrived, we mostly had to stay indoors. Apart from the routines of meals, hygiene, and physical therapy, there was often not much to do other than listen to music. If Duane was feeling high-energy, the playlist was anything with a fat beat, especially drum and bass. But on the days after a seizure, he’d often just sleep, and so quieter music was in order.

    On those days, since it was the Advent season, I worked through my Christmas classical collection, and ended up listening several hundred times to one movement from Mozart’s Great Mass in C Minor. In it, a soprano soloist sings thirteen words from the Credo, in a gentle but soaring melody: Et incarnatus est – “He was made flesh.” The final phrase is repeated over and over, the words dissolving into long melismas intertwined with oboes and bassoons, as if the music itself is overcome by an awe beyond all speech that this event truly happened: Et homo factus est – “and He was made man.”

    What kind of human being did Christ become when he was made flesh? Not someone, scripture hints, who was valuable by virtue of his physical beauty, credentials, social status, or freedom from dependence and vulnerability. According to Christian tradition, he was rather the man described by the prophet Isaiah: “He hath no form nor comeliness; and when we shall see him, there is no beauty that we should desire him. He is despised and rejected of men, a man of sorrows and acquainted with grief; and we hid as it were our faces from him; he was despised, and we esteemed him not” (Isa. 53:2–3).

    Mozart’s eight-minute song is the deepest meditation I know on the mystery of the Incarnation. This mystery is not accessible by the intellect. Though we may repeat the words of the creed, and affirm them as truths we accept, we don’t know what we’re saying unless we first let go of false conceptions of what being fully human means. Once we do so, we may discover a vocation that belongs to people disabled and nondisabled alike.

    In 1961, the novelist Flannery O’Connor, herself disabled by lupus, was invited by Dominican nuns in Atlanta to write an introduction to a memoir of a little girl they had cared for. Mary Ann Long would surely have fallen afoul of the ugly laws: she had one eye removed, and a tumor growing in half of her face. O’Connor wrote:

    Most of us have learned to be dispassionate about evil, to look it in the face and find, as often as not, our own grinning reflections with which we do not argue, but good is another matter. Few have stared at that long enough to accept the fact that its face too is grotesque, that in us the good is something under construction. The modes of evil usually receive worthy expression. The modes of good have to be satisfied with a cliché or a smoothing-down to soften their real look. When we look into the face of good, we are liable to see a face like Mary Ann’s, full of promise.

    Both Mary Ann and Duane show the face of what it is to be fully human, fully beautiful and good. To be human as Christ was human involves pain. It requires vulnerability, an emptying of one’s own power, and dependence instead of autonomy. It leads to perfection, but of a different sort than the one Socrates had in mind: “My strength is made perfect in weakness” (2 Cor. 12:9). This perfection is available to every human being. It is full of promise.

    Contributed By Peter Mommsen Peter Mommsen

    Peter Mommsen is editor of Plough Quarterly magazine. He lives in upstate New York with his wife, Wilma, and their three children.

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