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The Twenty-First Chromosome

Whose life is worth living? Who decides whose life is worth living?

Kishore Vellody found God inside a corpse. In his first year of medical school, beneath fluorescent lights in a windowless room, face-to-face with his first dead body, he cut through marbled layers of yellowed fat with blades and circular saws to get at the nerves and sinew and tissue inside the cadaver that he and his classmates huddled around—and something like scales fell from his eyes.

“It was like opening up a computer, you know, a PC box, and you’re like, somebody created this,” he says. “And I realized then that if that body, that dead body that I was seeing was created, that meant that I also was created.”

The son of doctors who immigrated from India, Kishore and his siblings grew up in the western suburbs of Chicago with a nominally Hindu upbringing. At around 8 or 9, Kishore noticed his older brother Das struggling with things that seemed to come naturally to other kids: walking and talking and reading and writing, but also simple things like turning on the stereo or remembering to wear his glasses. Das, Kishore’s mother explained, had Down syndrome, a condition caused by an extra X-shaped bundle of DNA in every cell in his body that made Das a bit slower than everyone else. 

Das Vellody, left, as a young boy in a green shirt kissing the head of his brother Kishore, right, as a boy, in a blue shirt smiling at the camera; both sitting in a large brown office chair
Das Vellody, left, as a young boy, kissing the head of his brother Kishore. (Photo courtesy Kishore Vellody)

“It still didn’t make any sense to me, how something extra, like an extra chromosome, could make somebody have to struggle,” Kishore says. “You would think more would be better, was kind of how my mind worked back then.”

The questions only multiplied as Kishore got older. What was the point of Das’s hardships? Why would any sort of God or higher power force Das to struggle with such basic tasks? Kishore saw Das get picked on at school and separated from other students, but it was their father’s cancer diagnosis that compelled him to believe, at age 15, that there was no God—certainly not any sort of benevolent God who cared for humanity—a belief he carried through high school and college and into his first year of medical school. 

Kishore Vellody, left, in a blue polo and khaki pants and wearing glasses smiles down at his brother Das, right, in a pink polo smiling at the camera
Kishore Vellody, left, and his brother Das. (Photo courtesy Kishore Vellody)

After his encounter with the corpse, Kishore tried reading the Bible. He started with the Old Testament and almost gave up at Deuteronomy, but a friend suggested that he begin with the New, and there he met a man named Jesus, who showed love and mercy to those who didn’t deserve it. In other words, he said, he saw Das. 

“I started to really reframe the way I looked at my brother,” Kishore says now. “I see how my brother has no problems loving and forgiving and having grace towards others, and I see that in Jesus, and that’s how I ended up giving my life to Him.”

In 2009, Kishore became medical director of the Down Syndrome Center at Children’s Hospital of Pittsburgh. He considers his work caring for children with Down syndrome an indirect way of caring for his brother, of treating his patients the way he would want Das to be treated. At the age of 21, Das graduated from high school and tried various jobs, including a stint at McDonald’s, before settling into an office job he’s held for the past decade or so, continuing to live with his parents in the western suburbs of Chicago. (Kishore said that Das declined to be interviewed.)

Kishore told me all in September of 2019, sitting in his third-floor office in the red-brick faculty building at Children’s—family photos on the shelves, Chicago Cubs pennant on the wall, an “I <3 Someone With Down Syndrome” sticker on the back cabinet—with an imperturbable pleasantness I recognized from my evangelical upbringing. 

He’s the sort of Christian who’s circumspect enough to ask if “it’s OK to talk about Jesus and Christianity and all that,” but also the sort of Christian who signs his emails with a Bible verse (“Whatever you do, work at it with all your heart.” – Colossians 3:23), wears an ID badge with a cross, and asks to pray with patients’ families if he senses they’re Christian. He’s a true believer who’s capable of saying one of the more unusual things I’ve ever heard anyone—medical professional or otherwise—say:

I think the reason why God has people with Down syndrome on the Earth is so that we can see what it looks like to have love for your enemy, and have forgiveness towards people. … If there were more people with Down syndrome than there were people [without], we wouldn’t have war, we wouldn’t have nationalistic anger one towards another, we wouldn’t have racism, we wouldn’t have sexism—we wouldn’t have any of those things, because they just don’t seem to exist when you give, when somebody has 47 chromosomes instead of 46. It’s just something on the twenty-first chromosome that gives them this extra bit of ability to really put on display what it looks like to be Christlike.


One of the first Western depictions of Down syndrome is a painting of a Christ Child: Virgin and Child, by the 15th-century Italian Renaissance painter Andrea Mantegna. According to Dr. Brian Stratford, a specialist in developmental disabilities, Mantegna’s patron had 14 children, one of whom had an unidentified “sickness” and died at the age of 4.

“Perhaps Mantegna saw in this child . . . the qualities of love, forgiveness, gentleness, and innocence,” wrote Dr. Stratford in 1982. “Maybe Mantegna saw these qualities as more representative of Christ than others we now regard so highly.”

The baby himself is cherubic and doll-like, swaddled in dark robes and gazing at the Virgin Mary with the upslanted, vaguely “Asian”-looking eyes that would give rise to the derogatory term “Mongol Idiocy” four centuries later.

“A very large number of congenital idiots are Mongols,” wrote John Langdon Down, the condition’s namesake, in 1867. The son of an English apothecary, Down had his own conversion moment at age 18, when a young, “feeble-minded” girl offered him tea as he took shelter from a rainstorm. “The question haunted me—could nothing for her be done?” he later wrote. “I had then not entered on a medical student’s career but ever and anon . . . the remembrance of that hapless girl presented itself to me and I longed to do something for her kind.”

At 25, he entered the Medical School of London Hospital. And at 30, he became director of the Earlswood Asylum for Idiots and Imbeciles. Inspired by pseudo-scientific theories of race, Down photographed hundreds of inmates and measured their skulls, classifying them as Caucasians, Mongols, Malayans, Ethiopians, and Aztecs. Only his description of Mongols would persist: flat face, obliquely shaped eyes, large tongue, poor muscle tone, and short stature. The cognitive abilities of “mongoloids” varied widely, but almost all experienced some level of speech impairment and developmental delays; about half were born with deadly congenital defects. The fact that Caucasian parents could give birth to Mongols, Down surmised, was the result of racial degeneration, where superior races regressed to their more primitive ancestors.

An illustration of John Langdon Down in a black three piece suit with white hair standing with a hand on his hip
John Langdon Down (Photo courtesy Langdon Down Museum of Learning Disability and the Down’s Syndrome Association UK)

Eugenicists, including Down’s son Reginald, took this thinking one step further. If an individual mongoloid degenerated a white family’s pedigree, then a society full of them would degenerate the entire Caucasian gene pool. (Ironically, Reginald’s son Jonathan was born with the condition his grandfather discovered.) The only way to stop demographic suicide, eugenicists argued, was to prevent the mentally disabled—as well as Black Americans, indigenous peoples, and other “undesirables”—from reproducing. By the start of World War II, involuntary sterilization was legal in 31 US states.

The Nazis took eugenics to its logical, bleak endpoint. “I have studied with great interest the laws of several American states concerning prevention of reproduction by people whose progeny would, in all probability, be of no value or be injurious to the racial stock,” Adolf Hitler wrote in Mein Kampf. Even sterilized, Hitler argued, those deemed “life unworthy of life” would still be a burden upon the welfare state—a burden to which he proposed a final solution.

Aktion T4 began in 1939 with the murder of physically and mentally disabled children under three years of age. Children were brought to psychiatric hospitals under the pretense of receiving special care, whereupon doctors starved them to death. The program’s purview expanded to include older children, adolescents, and finally adults, with methods ranging from drug overdose to lethal injection to gas chambers, which were later packed up and installed at Auschwitz and other extermination camps. By war’s end, the Nazis had murdered about 250,000 people in psychiatric hospitals across Germany, Austria, Poland, and Czechoslovakia.

As the story goes, enlightened Americans recoiled at the eugenicist practices revealed in the Nuremberg trials; the reality is that 20 US states still have eugenic-sterilization laws on the books. The 19th-century concept of racial degeneration evolved in the 20th into genetic mutation: in 1956, scientists discovered that humans have two copies of 23 chromosomes, making a total of 46. Three years later, French biologists Marthe Gautier and Jérôme Lejeune discovered that “mongoloids” have an extra copy of the twenty-first chromosome, a condition called trisomy 21. Nearly a decade would pass before the World Health Organization, in response to complaints from actual Mongolians, finally rechristened “mongolism” as Down syndrome.

The new name coincided with new medical and political breakthroughs. In 1968, a prenatal screening test called amniocentesis could identify fetal trisomy 21 at 15 weeks gestation. In 1973, Roe v. Wade legalized abortion in the US. Two years later, a couple in New York sued their doctors for failing to inform them about amniocentesis. If they’d known their child would be born with Down syndrome, the couple argued, they would have terminated the pregnancy. The couple sued for damages on behalf of their daughter’s “wrongful life” and won a settlement equal to the cost of the child’s lifetime medical expenses. A year after the settlement, the couple put up their daughter for adoption.

By 1982, advancements in infant surgery meant that the congenital defects that afflict half of all Down syndrome babies could be corrected. A couple in Bloomington, Ind., questioned if those babies were worth saving. Their son had been born with a Down syndrome-associated anomaly—esophageal atresia, which prevents normal feeding—and his parents refused corrective surgery, despite the surgery’s high success rate. With the parents’ consent, the doctors starved the baby. He died in six days.

Princeton bioethics professor Peter Singer has argued that killing disabled infants is not just permissible, but a moral imperative. Suppose a woman gave birth to a nondisabled child and a disabled child: “The burden of caring for [the disabled] child may make it impossible for her to cope with a third child, but if the disabled child were to die, she would have another,” he wrote in his book Practical Ethics. “Therefore, if killing [the disabled] infant has no adverse effect on others, it would, according to the total view, be right to kill him.” (Singer is Jewish; three of his grandparents died in the Holocaust.) In a 2004 TV interview, Singer said that “other things being equal, I think most of us would prefer our children not to have disabilities,” citing the fact that in his native Australia, 85% of pregnancies with a fetal DS diagnosis are aborted. The abortion rate is 67% in the US and more than 90% in parts of Europe today.

Five US states in the past three years have criminalized abortion on the basis of a fetal Down syndrome diagnosis—the latest episode in the 150-year modern history of Down syndrome which, viewed from a certain angle, emerges as a shadow history of the West. One in every 700 babies are born with Down syndrome. This 0.14% of the population has acted as the human terrain on which the boundary between personhood and non-personhood is negotiated, the site at which ever-shifting conceptions of race and human rights are made flesh, and the nexus at which two questions converge: Whose life is worth living? And who decides whose life is worth living? 

Doctors, parents, professors, politicians, biologists, bioethicists, geneticists, eugenicists, and Nazis have given their answers. What answers would a person with Down syndrome give?


If you’ve met one person with Down syndrome, you’ve met one person with Down syndrome. 

Kishore Vellody put me in touch with Ben Allison who lives in Sharpsburg, Penn., across the Allegheny River from the Pittsburgh Zoo. The sky was cloudless and the street empty. The screen door was unlocked, the front door opened. His mother Berneeta told me to come in and keep my shoes on. Ben came downstairs, trying to loop a pre-tied tie around the collar of his salmon-colored button down, in preparation for his grandfather’s birthday celebration later that evening. His beard was greying and his hairline seemed a bit receded for a 28-year-old. Cozy, his Yorkshire Terrier, licked his palms as he sat on the living room carpet, and throughout the interview he’d lie on his back, let her climb onto his chest, and kiss her.

“Take your glasses off,” Berneeta said, and he did. “You can see the Down syndrome much more when he takes the glasses off, his eyes.”

It was a complicated pregnancy. Berneeta had to be fed intravenously for nine weeks and went into labor three weeks early. Twenty minutes after giving birth, the doctor diagnosed Ben with Down syndrome. They needed to perform a karyotype—photograph the chromosomes—to know for sure, but Berneeta was a nurse and recognized the signs, the thick neck and tell-tale eyes. They all started crying, Berneeta and her husband and sister and parents, except for her three-year-old daughter Donata.

“I don’t know why you’re crying,” Donata said, “but I got my baby, and I’m happy.”

Ben Allison, left, wearing glasses and a striped button down shirt smiles at the camera with his arm around his mother Berneeta, also smiling at the camera in a striped t shirt and glasses
Ben Allison, left, and his mother Berneeta. (Photo courtesy Berneeta Allison)

Ben didn’t walk until he was two, and didn’t talk until he was five. Like many infants with Down syndrome, he received early intervention services—weekly visits from occupational, physical, and speech therapists—which Berneeta said were paid for by Allegheny County. He took medication for his cross eyes, which affected his sphincter muscles and delayed his potty training. When he had corrective vision surgery at age five and stopped taking the medication, he potty trained in a day.

Shortly afterwards, he entered a developmental preschool. Berneeta said they couldn’t find a good fit for kindergarten and homeschooled him instead, although he attended public school in the third grade.

“He was only there a year, and God told me to take him back home, so that’s what I did,” she said.

She dropped to working two days a week, while her husband worked full-time as a locksmith at the University of Pittsburgh. Ben went horseback riding every Monday as part of his physical therapy, and every Friday he went to a meet-up with other homeschoolers. He attends church three times a week, once on Wednesday and twice on Sunday, which is where he and his mother met Dr. Vellody. Ben hates skipping church, and said it’s unhealthy. 

“Jesus is king of kings and lord of lords,” he said. Berneeta asked him where Jesus lives.

“Heaven,” he said. 

“No,” she said, “where does he live?” 

“Oh right,” he said. He thumped his chest.

“I know God doesn’t make mistakes. I know Ben was to be here exactly the way he is,” Berneeta told me. “I know so many people who’ve gotten a prenatal diagnosis and been offered abortion right from the start. And I just don’t see any reason for abortion, ever, even if my life was in danger. But a lot of people do. And it’s because of fear of the unknown, and it’s because of people telling things that aren’t true. And it’s an easy way out, you know what I mean? They can just do that now.”

The Down syndrome community is split on abortion but universally supportive of information that dispels misconceptions about the condition. When pregnant women in Pittsburgh-region hospitals receive a fetal DS diagnosis, Kishore Vellody will often personally visit, give them up-to-date information (due to medical advances and the shuttering of notoriously negligent state hospitals, life expectancy is now 60 years, as opposed to 25 in 1983), and tell them stories about his brother Das.

“I don’t think it’s the way we’re called to as Christians, to say to them, ‘You’re a sinner if you do this,’” he said. “My job is to show them that they will have love and support regardless of the decision they make—but, let me tell you more about how my brother has impacted me.”

Since his son Jamie was born with Down syndrome, Penn State English professor Michael Bérubé has written two memoirs testifying to the richness of Jamie’s life, while also defending reproductive rights. 

“When parental leave is the law of the land,” he wrote, “when private insurers can’t drop families from the rolls because of ‘high risk’ children, when every child can be fed, clothed, and cared for—then we can start talking about what kind of a choice ‘life’ might be.”

Michael Berube and his son Jamie recite lines from Babe, one of Jamie's favorite movies. The two share a very close bond, and regularly discuss everything from literature to nature to movies. Michael says that Jamie regularly surprises and delights him with his insights into the books they read together every night before bed.
Michael Berube (left) sits with his son Jamie. (Photo by Sara Naomi Lewkowicz for Al Jazeera)

I called Bérubé and asked him about a passage from his first memoir that reminded me of Kishore Vellody’s beliefs about the “meaning” of Down syndrome: “There are days when, despite everything I know and profess, I catch myself believing that people with Down syndrome are here for a specific purpose—perhaps to teach us patience, or humility, or compassion, or mere joy. … It speaks to us strongly of design, if design may govern in a thing so small.” 

Michael told me he regretted that passage. He was describing something he found tempting but didn’t actually believe, and was referencing the Robert Frost poem “Design” in the last sentence (“What but design of darkness to appall?— / If design govern in a thing so small”). He found that Christians often quoted that passage, especially the line about design, when in reality he believes that “life is pretty random. It’s not here for any reason. There is no design. And I really do not want to believe that anybody with a disability is around to make other people better.”

I didn’t talk with Ben about his reason for existence, but he did tell me about his future. 

He became engaged to a woman named Ashley when he was 21. The two had met at a Buddy Walk organized by the Down Syndrome Association of Pittsburgh. He asked her out to a dance, she said yes, and they were inseparable after that. They’d sit out on the porch together, go to the movies, and spend holidays with each other’s families. Ben wasn’t allowed to celebrate Halloween as a kid—he went to church instead of trick-or-treating—but as an adult he started dressing up in matching costumes with Ashley. One year, she was Alice in Wonderland and he was the Mad Hatter; the next, she was an angel and he was Jesus.

Ashley’s mother put an end to the relationship. She wrote a Facebook post claiming that Ashley was afraid of Ben, which Berneeta disputed, and forbade Ashley from seeing him. After the break-up, Ben spent a lot of time in his room. He’d walk up the stairs, close the door, put his engagement ring on the dresser, and listen to the Backstreet Boys while lying in bed.

“We have no future together anymore. Her mother broke us up,” Ben said. “I’m going to be a scientist and inventor. That’s my future.”

His future is the past, he says, explaining that he’s going to invent a time machine. His favorite movie is Back to the Future—he even has a picture of himself with a DeLorean. He’ll go to the beginning, to 1981, when his parents first met and introduce himself and say his name, a fake name, not like Marty and his Calvin Klein mix-up, and tell them all about their future, their marriage, their house across the river from the zoo, their daughter, their son and his diagnosis, all the events of their entangled lives lined up one after the other like dominoes, each tumbling into the next in a causal chain that is at once completely random and perfectly designed, stretching out to the horizon, beyond what the eye can see.

Then, he’ll buy them a drink.

This story was made possible by the support of longform journalist Jeff Maysh, Sunday Long Read publishing partner Ruth Ann Harnisch, and Sunday Long Read subscribers. Edited by Peter Bailey-Wells. Designed by Anagha Srikanth. 

About Boen Wang

Boen Wang is an MFA candidate in nonfiction at the University of Pittsburgh. His written work has appeared in The Fourth River, Inheritance, PopMatters, and elsewhere; his audio work has won the “Best New Artist” award at the Third Coast International Audio Festival. Visit his website at boen.cool.

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