"The Last Children of Downs' Syndrome" - Discussion

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Pick: Jul 19, 2009; Nap Ghost

The Atlantic published an article about how, essentially, due to screening, Down's Syndrome kids are not born in Denmark any more (and those who are born, mostly are from people who got inaccurate test results). In the entire nation of Denmark, it ranges from 0-18 kids a year.

This has implications for the structures that exist to help these people, but also for the pressures on women, including how women are under tremendous ethical scrutiny on an individual basis. This article has generated a ton of discussion in women's spaces.

:siren:

TO PARTICIPATE IN THIS THREAD, YOU MUST READ THE ARTICLES IN THE ORIGINAL POST. THIS THREAD IS SPECIFICALLY ABOUT THESE ARTICLES, AND WITHOUT READING THESE ARTICLES, YOU WILL NOT BE ABLE TO DISCUSS THEM. :siren:

If an entire magazine article is "too long; didn't read" for you, do NOT post in this thread.

(My takes are coming, but I'm formatting the OP at the moment. Thanks.)

quote:

Every few weeks or so, Grete F�lt-Hansen gets a call from a stranger asking a question for the first time: What is it like to raise a child with Down syndrome?

Sometimes the caller is a pregnant woman, deciding whether to have an abortion. Sometimes a husband and wife are on the line, the two of them in agonizing disagreement. Once, F�lt-Hansen remembers, it was a couple who had waited for their prenatal screening to come back normal before announcing the pregnancy to friends and family. �We wanted to wait,� they�d told their loved ones, �because if it had Down syndrome, we would have had an abortion.� They called F�lt-Hansen after their daughter was born�with slanted eyes, a flattened nose, and, most unmistakable, the extra copy of chromosome 21 that defines Down syndrome. They were afraid their friends and family would now think they didn�t love their daughter�so heavy are the moral judgments that accompany wanting or not wanting to bring a child with a disability into the world.

All of these people get in touch with F�lt-Hansen, a 54-year-old schoolteacher, because she heads Landsforeningen Downs Syndrom, or the National Down Syndrome Association, in Denmark, and because she herself has an 18-year-old son, Karl Emil, with Down syndrome. Karl Emil was diagnosed after he was born. She remembers how fragile he felt in her arms and how she worried about his health, but mostly, she remembers, �I thought he was so cute.� Two years after he was born, in 2004, Denmark became one of the first countries in the world to offer prenatal Down syndrome screening to every pregnant woman, regardless of age or other risk factors. Nearly all expecting mothers choose to take the test; of those who get a Down syndrome diagnosis, more than 95 percent choose to abort.

Denmark is not on its surface particularly hostile to disability. People with Down syndrome are entitled to health care, education, even money for the special shoes that fit their wider, more flexible feet. If you ask Danes about the syndrome, they�re likely to bring up Morten and Peter, two friends with Down syndrome who starred in popular TV programs where they cracked jokes and dissected soccer games. Yet a gulf seems to separate the publicly expressed attitudes and private decisions. Since universal screening was introduced, the number of children born with Down syndrome has fallen sharply. In 2019, only 18 were born in the entire country. (About 6,000 children with Down syndrome are born in the U.S. each year.)

F�lt-Hansen is in the strange position of leading an organization likely to have fewer and fewer new members. The goal of her conversations with expecting parents, she says, is not to sway them against abortion; she fully supports a woman�s right to choose. These conversations are meant to fill in the texture of daily life missing both from the well-meaning clich� that �people with Down syndrome are always happy� and from the litany of possible symptoms provided by doctors upon diagnosis: intellectual disability, low muscle tone, heart defects, gastrointestinal defects, immune disorders, arthritis, obesity, leukemia, dementia. She might explain that, yes, Karl Emil can read. His notebooks are full of poetry written in his careful, sturdy handwriting. He needed physical and speech therapy when he was young. He loves music�his gold-rimmed glasses are modeled after his favorite Danish pop star�s. He gets cranky sometimes, like all teens do.

One phone call might stretch into several; some people even come to meet her son. In the end, some join the association with their child. Others, she never hears from again.

These parents come to F�lt-Hansen because they are faced with a choice�one made possible by technology that peers at the DNA of unborn children. Down syndrome is frequently called the �canary in the coal mine� for selective reproduction. It was one of the first genetic conditions to be routinely screened for in utero, and it remains the most morally troubling because it is among the least severe. It is very much compatible with life�even a long, happy life.

Elea Aars�, 6, shown with her father and her sister (and in the opening image)
Elea Aars�, 6, shown with her father and her sister (and in the opening image), is the youngest of five children. Her parents opted out of the prenatal screening for Down syndrome because, though they support the right to abortion, they knew they would have the baby either way. (Julia Sellmann)
The forces of scientific progress are now marching toward ever more testing to detect ever more genetic conditions. Recent advances in genetics provoke anxieties about a future where parents choose what kind of child to have, or not have. But that hypothetical future is already here. It�s been here for an entire generation.

Read: �I am a man with Down syndrome and my life is worth living�

F�lt-Hansen says the calls she receives are about information, helping parents make a truly informed decision. But they are also moments of seeking, of asking fundamental questions about parenthood. Do you ever wonder, I asked her, about the families who end up choosing an abortion? Do you feel like you failed to prove that your life�and your child�s life�is worth choosing? She told me she doesn�t think about it this way anymore. But in the beginning, she said, she did worry: �What if they don�t like my son?�

��

In january, I took a train from Copenhagen south to the small town of Vordingborg, where Grete, Karl Emil, and his 30-year-old sister, Ann Katrine Kristensen, met me at the station. The three of them formed a phalanx of dark coats waving hello. The weather was typical of January�cold, gray, blustery�but Karl Emil pulled me over to the ice-cream shop, where he wanted to tell me he knew the employees. His favorite ice-cream flavor, he said, was licorice. �That�s very Danish!� I said. Grete and Ann Katrine translated. Then he zagged over to a men�s clothing store and struck up a conversation with the clerk, who had just seen Karl Emil interviewed on a Danish children�s program with his girlfriend, Chloe. �You didn�t tell me you had a girlfriend,� the clerk teased. Karl Emil laughed, mischievous and proud.

We sat down at a caf�, and Grete gave her phone to Karl Emil to busy himself with while we spoke in English. He took selfies; his mother, sister, and I began to talk about Down syndrome and the country�s prenatal-screening program. At one point, Grete was reminded of a documentary that had sparked an outcry in Denmark. She reclaimed her phone to look up the title: D�d Over Downs (�Death to Down Syndrome�). When Karl Emil read over her shoulder, his face crumpled. He curled into the corner and refused to look at us. He had understood, obviously, and the distress was plain on his face.

Grete looked up at me: �He reacts because he can read.�

�He must be aware of the debate?� I asked, which felt perverse to even say. So he�s aware there are people who don�t want people like him to be born? Yes, she said; her family has always been open with him. As a kid, he was proud of having Down syndrome. It was one of the things that made him uniquely Karl Emil. But as a teenager, he became annoyed and embarrassed. He could tell he was different. �He actually asked me, at some point, if it was because of Down syndrome that he sometimes didn�t understand things,� Grete said. �I just told him honestly: Yes.� As he�s gotten older, she said, he�s made his peace with it. This arc felt familiar. It�s the arc of growing up, in which our self-assuredness as young children gets upended in the storms of adolescence, but eventually, hopefully, we come to accept who we are.

Suddenly, a new power was thrust into the hands of ordinary people�the power to decide what kind of life is worth bringing into the world.
The decisions parents make after prenatal testing are private and individual ones. But when the decisions so overwhelmingly swing one way�to abort�it does seem to reflect something more: an entire society�s judgment about the lives of people with Down syndrome. That�s what I saw reflected in Karl Emil�s face.

Denmark is unusual for the universality of its screening program and the comprehensiveness of its data, but the pattern of high abortion rates after a Down syndrome diagnosis holds true across Western Europe and, to a somewhat lesser extent, in the United States. In wealthy countries, it seems to be at once the best and the worst time for Down syndrome. Better health care has more than doubled life expectancy. Better access to education means most children with Down syndrome will learn to read and write. Few people speak publicly about wanting to �eliminate� Down syndrome. Yet individual choices are adding up to something very close to that.

Karl Emil F�lt-Hansen blows seeds from a dandelion
Karl Emil F�lt-Hansen, who is 18, lives with his family in the small town of Vordingborg, Denmark. (Julia Sellmann)
In the 1980s, as prenatal screening for Down syndrome became common, the anthropologist Rayna Rapp described the parents on the frontier of reproductive technology as �moral pioneers.� Suddenly, a new power was thrust into the hands of ordinary people�the power to decide what kind of life is worth bringing into the world.

The medical field has also been grappling with its ability to offer this power. �If no one with Down syndrome had ever existed or ever would exist�is that a terrible thing? I don�t know,� says Laura Hercher, a genetic counselor and the director of student research at Sarah Lawrence College. If you take the health complications linked to Down syndrome, such as increased likelihood of early-onset Alzheimer�s, leukemia, and heart defects, she told me, �I don�t think anyone would argue that those are good things.�

But she went on. �If our world didn�t have people with special needs and these vulnerabilities,� she asked, �would we be missing a part of our humanity?�

��

Sixty-one years ago, the first known prenatal test for a genetic disorder in the world took place in Copenhagen. The patient was a 27-year-old woman who was a carrier for hemophilia, a rare and severe bleeding disorder that is passed from mothers to sons. She had already given birth to one infant boy, who lived for just five hours. The obstetrician who delivered the baby, Fritz Fuchs, told her to come back if she ever became pregnant again. And in 1959, according to the published case study, she did come back, saying she couldn�t go through with her pregnancy if she was carrying another son.

Fuchs had been thinking about what to do. Along with a cytologist named Povl Riis, he�d been experimenting with using fetal cells floating in the yellow amniotic fluid that fills the womb to determine a baby�s sex. A boy would have a 50 percent risk of inheriting hemophilia; a girl would have almost no risk. But first they needed some amniotic fluid. Fuchs eased a long needle into the woman�s abdomen; Riis studied the cells under a microscope. It was a girl.

The woman gave birth to a daughter a few months later. If the baby had been a boy, though, she was prepared to have an abortion�which was legal under Danish law at the time on �eugenic grounds� for fetuses at risk for severe mental or physical illness, according to Riis and Fuchs�s paper describing the case. They acknowledged the possible danger of sticking a needle in the abdomen of a pregnant woman, but wrote that it was justified �because the method seems to be useful in preventive eugenics.�

That word, eugenics, today evokes images that are specific and heinous: forced sterilization of the �feebleminded� in early-20th-century America, which in turn inspired the racial hygiene of the Nazis, who gassed or otherwise killed tens of thousands of people with disabilities, many of them children. But eugenics was once a mainstream scientific pursuit, and eugenicists believed that they were bettering humanity. Denmark, too, drew inspiration from the U.S., and it passed a sterilization law in 1929. Over the next 21 years, 5,940 people were sterilized in Denmark, the majority because they were �mentally retarded.� Those who resisted sterilization were threatened with institutionalization.

Eugenics in Denmark never became as systematic and violent as it did in Germany, but the policies came out of similar underlying goals: improving the health of a nation by preventing the birth of those deemed to be burdens on society. The term eugenics eventually fell out of favor, but in the 1970s, when Denmark began offering prenatal testing for Down syndrome to mothers over the age of 35, it was discussed in the context of saving money�as in, the testing cost was less than that of institutionalizing a child with a disability for life. The stated purpose was �to prevent birth of children with severe, lifelong disability.�

That language too has long since changed; in 1994, the stated purpose of the testing became �to offer women a choice.� Activists like F�lt-Hansen have also pushed back against the subtle and not-so-subtle ways that the medical system encourages women to choose abortion. Some Danish parents told me that doctors automatically assumed they would want to schedule an abortion, as if there was really no other option. This is no longer the case, says Puk Sandager, a fetal-medicine specialist at Aarhus University Hospital. Ten years ago, doctors�especially older doctors�were more likely to expect parents to terminate, she told me. �And now we do not expect anything.� The National Down Syndrome Association has also worked with doctors to alter the language they use with patients��probability� instead of �risk,� �chromosome aberration� instead of �chromosome error.� And, of course, hospitals now connect expecting parents with people like F�lt-Hansen to have those conversations about what it�s like to raise a child with Down syndrome.

Pepper Stetler: The gap between my daughter and her peers is growing

Perhaps all of this has had some effect, though it�s hard to say. The number of babies born to parents who chose to continue a pregnancy after a prenatal diagnosis of Down syndrome in Denmark has ranged from zero to 13 a year since universal screening was introduced. In 2019, there were seven. (Eleven other babies were born to parents who either declined the test or got a false negative, making the total number of babies born with Down syndrome last year 18.)

Why so few? �Looking at it from the outside, a country like Denmark, if you want to raise a child with Down syndrome, this is a good environment,� says Stina Lou, an anthropologist who has studied how parents make decisions after a prenatal diagnosis of a fetal anomaly. Since 2011, she has embedded in the fetal-medicine unit at Aarhus University Hospital, one of the largest hospitals in Denmark, where she has shadowed Sandager and other doctors.

Under the 2004 guidelines, all pregnant women in Denmark are offered a combined screening in the first trimester, which includes blood tests and an ultrasound. These data points, along with maternal age, are used to calculate the odds of Down syndrome. The high-probability patients are offered a more invasive diagnostic test using DNA either from the fetal cells floating in the amniotic fluid (amniocentesis) or from placental tissue (chorionic villus sampling). Both require sticking a needle or catheter into the womb and come with a small risk of miscarriage. More recently, hospitals have started offering noninvasive prenatal testing, which uses fragments of fetal DNA floating in the mother�s blood. That option has not become popular in Denmark, though, probably because the invasive tests can pick up a suite of genetic disorders in addition to Down syndrome. More diseases ruled out, more peace of mind.

But Lou was interested in the times when the tests did not provide peace of mind, when they in fact provided the opposite. In a study of 21 women who chose abortion after a prenatal diagnosis of Down syndrome, she found that they had tended to base their decisions on worst-case scenarios. An extra copy of chromosome 21 can cause a variety of symptoms, the severity of which is not known until birth or even later. Most people with Down syndrome learn to read and write. Others are nonverbal. Some do not have heart defects. Others spend months or even years in and out of the hospital to fix a heart valve. Most have healthy digestive systems. Others lack the nerve endings needed to anticipate bowel movements, necessitating more surgeries, possibly even a stoma bag or diapers. The women who chose abortion feared the worst possible outcomes. Some even grieved the possibility of aborting a child who might have had a mild form of Down syndrome. But in the end, Lou told me, �the uncertainty just becomes too much.�

Stina Lou, an anthropologist
Stina Lou, an anthropologist, studies the decisions prospective parents make after a prenatal diagnosis of an anomaly. (Julia Sellmann)
This emphasis on uncertainty came up when I spoke with David Wasserman, a bioethicist at the U.S. National Institutes of Health who, along with his collaborator Adrienne Asch, has written some of the most pointed critiques of selective abortion. (Asch died in 2013.) They argued that prenatal testing has the effect of reducing an unborn child to a single aspect�Down syndrome, for example�and making parents judge the child�s life on that alone. Wasserman told me he didn�t think that most parents who make these decisions are seeking perfection. Rather, he said, �there�s profound risk aversion.�

It�s hard to know for sure whether the people in Lou�s study decided to abort for the reasons they gave or if these were retrospective justifications. But when Lou subsequently interviewed parents who had made the unusual choice to continue a pregnancy after a Down syndrome diagnosis, she found them more willing to embrace uncertainty.

Parents of children with Down syndrome have described to me the initial process of mourning the child they thought they would have: the child whom they were going to walk down the aisle, who was going to graduate from college, who was going to become president. None of this is guaranteed with any kid, of course, but while most parents go through a slow realignment of expectations over the years, prenatal testing was a rapid plummet into disappointment�all those dreams, however unrealistic, evaporating at once. And then the doctors present you with a long list of medical conditions associated with Down syndrome. Think about it this way, Karl Emil�s sister, Ann Katrine, said: �If you handed any expecting parent a whole list of everything their child could possibly encounter during their entire life span�illnesses and stuff like that�then anyone would be scared.�

�Nobody would have a baby,� Grete said.

��

Apeculiar effect of Denmark�s universal-screening program and high abortion rate for Down syndrome is that a fair number of babies born with Down syndrome are born to parents who essentially got a false negative. Their first-trimester screening results said their odds were very low�so low that they needed no invasive follow-up testing. They simply went on with what they thought was an ordinary pregnancy. In other words, like the couple Grete once counseled, these are parents who might have chosen to abort, had they known.

The day after I met Grete, I attended a meeting of the local Copenhagen Down syndrome group. The woman who invited me, Louise Aars�, had a then-5-year-old daughter with Down syndrome, Elea. Aars� and her husband had made the unusual choice to opt out of screening. Though they support the right to abortion, they knew they would want to have the baby either way. At the meeting, two of the seven other families told me their prenatal screening had suggested extremely low odds. At birth, they were surprised. A few others said they had chosen to continue the pregnancy despite a high probability for Down syndrome. Ulla Hartmann, whose son Ditlev was 18, noted that he was born before the national screening program began. �We�re very thankful we didn�t know, because we had two twin boys when I got pregnant with Ditlev and I really don�t think we would have been, �Okay, let�s take this challenge when we have these monkeys up in the curtains,� � she told me. �But you grow with the challenge.�

Daniel Christensen was one of the parents who had been told the odds of Down syndrome were very low, something like 1 in 1,500. He and his wife didn�t have to make a choice, and when he thinks back on it, he said, �what scares me the most is actually how little we knew about Down syndrome.� What would the basis of their choice have been? Their son August is 4 now, with a twin sister, who Christensen half-jokingly said was �almost normal.� The other parents laughed. �Nobody�s normal,� he said.

Then the woman to my right spoke; she asked me not to use her name. She wore a green blouse, and her blond hair was pulled into a ponytail. When we all turned to her, I noticed that she had begun to tear up. �Now I�m moved from all the stories; I�m a little �� She paused to catch her breath. �My answer is not that beautiful.� The Down syndrome odds for her son, she said, were 1 in 969.

�You remember the exact number?� I asked.

�Yeah, I do. I went back to the papers.� The probability was low enough that she didn�t think about it after he was born. �On the one hand I saw the problems. And on the other hand he was perfect.� It took four months for him to get diagnosed with Down syndrome. He is 6 now, and he cannot speak. It frustrates him, she said. He fights with his brother and sister. He bites because he cannot express himself. �This has just been so many times, and you never feel safe.� Her experience is not representative of all children with Down syndrome; lack of impulse control is common, but violence is not. Her point, though, was that the image of a happy-go-lucky child so often featured in the media is not always representative either. She wouldn�t have chosen this life: �We would have asked for an abortion if we knew.�

Another parent chimed in, and the conversation hopscotched to a related topic and then another until it had moved on entirely. At the end of the meeting, as others stood and gathered their coats, I turned to the woman again because I was still shocked that she was willing to say what she�d said. Her admission seemed to violate an unspoken code of motherhood.

Of course, she said, �it�s shameful if I say these things.� She loves her child, because how can a mother not? �But you love a person that hits you, bites you? If you have a husband that bites you, you can say goodbye � but if you have a child that hits you, you can�t do anything. You can�t just say, �I don�t want to be in a relationship.� Because it�s your child.� To have a child is to begin a relationship that you cannot sever. It is supposed to be unconditional, which is perhaps what most troubles us about selective abortion�it�s an admission that the relationship can in fact be conditional.

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Pick: Jul 19, 2009; Nap Ghost

quote:

Parenting is a plunge into the unknown and the uncontrollable. It is beautiful in this way, but also daunting.

In the cold, scientific realm of biology, reproduction begins with a random genetic shuffling�an act of fate, if you were to be less cold, more poetic. The 23 pairs of chromosomes in our cells line up so that the DNA we inherited from our mother and father can be remixed and divided into sets of 23 single chromosomes. Each egg or sperm gets one such set. In women, this chromosomal division begins, remarkably, when they themselves are fetuses in their mother�s womb. The chromosomes freeze in place for 20, 30, even 40-plus years as the fetus becomes a baby, a girl, a woman. The cycle finishes only when the egg is fertilized. During the intervening years, the proteins holding chromosomes together can degrade, resulting in eggs with too many or too few chromosomes. This is the biological mechanism behind most cases of Down syndrome�95 percent of people born with an extra copy of chromosome 21 inherited it from their mother. And this is why the syndrome is often, though not always, linked to the age of the mother.

Black and white photo of a Danish woman
A Danish woman who chose abortion after a prenatal diagnosis of Down syndrome said she was disappointed to find so little in the media about women who had made the same decision. (Julia Sellmann)
In the interviews I�ve conducted, and in interviews Lou and researchers across the U.S. have conducted, the choice of what to do after a prenatal test fell disproportionately on mothers. There were fathers who agonized over the choice too, but mothers usually bore most of the burden. There is a feminist explanation (my body, my choice) and a less feminist one (family is still primarily the domain of women), but it�s true either way. And in making these decisions, many of the women seemed to anticipate the judgment they would face.

Lou told me she had wanted to interview women who chose abortion after a Down syndrome diagnosis because they�re a silent majority. They are rarely interviewed in the media, and rarely willing to be interviewed. Danes are quite open about abortion�astonishingly so to my American ears�but abortions for a fetal anomaly, and especially Down syndrome, are different. They still carry a stigma. �I think it�s because we as a society like to think of ourselves as inclusive,� Lou said. �We are a rich society, and we think it�s important that different types of people should be here.� And for some of the women who end up choosing abortion, �their own self-understanding is a little shaken, because they have to accept they aren�t the kind of person like they thought,� she said. They were not the type of person who would choose to have a child with a disability.

For the women in Lou�s study, ending a pregnancy after a prenatal diagnosis was very different from ending an unwanted pregnancy. These were almost all wanted pregnancies, in some cases very much wanted pregnancies following long struggles with infertility. The decision to abort was not taken lightly. One Danish woman I�ll call �L� told me how terrible it was to feel her baby inside her once she�d made the decision to terminate. In the hospital bed, she began sobbing so hard, the staff had difficulty sedating her. The depth of her emotions surprised her, because she was so sure of her decision. The abortion was two years ago, and she doesn�t think about it much anymore. But recounting it on the phone, she began crying again.

She was disappointed to find so little in the media about the experiences of women like her. �It felt right for me, and I have no regrets at all,� she told me, but it also feels like �you�re doing something wrong.� L is a filmmaker, and she wanted to make a documentary about choosing abortion after a Down syndrome diagnosis. She even thought she would share her own story. But she hadn�t been able to find a couple willing to be in this documentary, and she wasn�t ready to put herself out there alone.

When Rayna Rapp, the anthropologist who coined the term moral pioneers, interviewed parents undergoing prenatal testing in New York in the 1980s and �90s, she noticed a certain preoccupation among certain women. Her subjects represented a reasonably diverse slice of the city, but middle-class white women especially seemed fixated on the idea of �selfishness.� The women she interviewed were among the first in their families to forgo homemaking for paid work; they had not just jobs but careers that were central to their identity. With birth control, they were having fewer children and having them later. They had more reproductive autonomy than women had ever had in human history. (Rapp herself came to this research after having an abortion because of Down syndrome when she became pregnant as a 36-year-old professor.) �Medical technology transforms their �choices� on an individual level, allowing them, like their male partners, to imagine voluntary limits to their commitments to their children,� Rapp wrote in her book Testing Women, Testing the Fetus.

�I have guilt for not being the kind of person who could parent this particular type of special need,� one woman said. �Guilt, guilt, guilt.�
But exercising those �voluntary limits� on motherhood�choosing not to have a child with a disability out of fear for how it might affect one�s career, for example�becomes judged as �selfishness.� Medical technology can offer women a choice, but it does not instantly transform the society around them. It does not dismantle the expectation that women are the primary caregivers or erase the ideal of a good mother as one who places no limits on her devotion to her children.

The centrality of choice to feminism also brings it into uncomfortable conflict with the disability-rights movement. Anti-abortion-rights activists in the U.S. have seized on this to introduce bills banning selective abortion for Down syndrome in several states. Feminist disability scholars have attempted to resolve the conflict by arguing that the choice is not a real choice at all. �The decision to abort a fetus with a disability even because it �just seems too difficult� must be respected,� Marsha Saxton, the director of research at the World Institute on Disability, wrote in 1998. But Saxton calls it a choice made �under duress,� arguing that a woman faced with this decision is still constrained today�by popular misconceptions that make life with a disability out to be worse than it actually is and by a society that is hostile to people with disabilities.

Pasquale Toscano and Alexis Doyle: Selective-abortion bans treat disability as a tragedy

And when fewer people with disabilities are born, it becomes harder for the ones who are born to live a good life, argues Rosemarie Garland-Thomson, a bioethicist and professor emerita at Emory University. Fewer people with disabilities means fewer services, fewer therapies, fewer resources. But she also recognizes how this logic pins the entire weight of an inclusive society on individual women.

Sally Dybkj�r Andersson, age 6
Sally Dybkj�r Andersson, age 6, is one of very few children in Denmark with Down syndrome. Since universal prenatal screening
was introduced in 2004, the number of children in the country born with the syndrome has fallen sharply. In 2019, it was just 18. (Julia Sellmann)
No wonder, then, that �choice� can feel like a burden. In one small study of women in the U.S. who chose abortion after a diagnosis of a fetal anomaly, two-thirds said they�d hoped�or even prayed�for a miscarriage instead. It�s not that they wanted their husbands, their doctors, or their lawmakers to tell them what to do, but they recognized that choice comes with responsibility and invites judgment. �I have guilt for not being the kind of person who could parent this particular type of special need,� said one woman in the study. �Guilt, guilt, guilt.�

The introduction of a choice reshapes the terrain on which we all stand. To opt out of testing is to become someone who chose to opt out. To test and end a pregnancy because of Down syndrome is to become someone who chose not to have a child with a disability. To test and continue the pregnancy after a Down syndrome diagnosis is to become someone who chose to have a child with a disability. Each choice puts you behind one demarcating line or another. There is no neutral ground, except perhaps in hoping that the test comes back negative and you never have to choose what�s next.

What kind of choice is this, if what you hope is to not have to choose at all?

��

Down syndrome is unlikely to ever disappear from the world completely. As women wait longer to have children, the incidence of pregnancies with an extra copy of chromosome 21 is going up. Prenatal testing can also in rare cases be wrong, and some parents will choose not to abort or not to test at all. Others will not have access to abortion.

In the United States�which has no national health-care system, no government mandate to offer prenatal screening�the best estimate for the termination rate after a diagnosis of Down syndrome is 67 percent. But that number conceals stark differences within the country. One study found higher rates of termination in the West and Northeast and among mothers who are highly educated. �On the Upper East Side of Manhattan, it�s going to be completely different than in Alabama,� said Laura Hercher, the genetic counselor.

How do you choose between one embryo with a slightly elevated risk of schizophrenia and another with a moderate risk of breast cancer?
These differences worry Hercher. If only the wealthy can afford to routinely screen out certain genetic conditions, then those conditions can become proxies of class. They can become, in other words, other people�s problems. Hercher worries about an empathy gap in a world where the well-off feel insulated from sickness and disability.

For those with the money, the possibilities of genetic selection are expanding. The leading edge is preimplantation genetic testing (PGT) of embryos created through in vitro fertilization, which altogether can cost tens of thousands of dollars. Labs now offer testing for a menu of genetic conditions�most of them rare and severe conditions such as Tay-Sachs disease, cystic fibrosis, and phenylketonuria�allowing parents to select healthy embryos for implantation in the womb. Scientists have also started trying to understand more common conditions that are influenced by hundreds or even thousands of genes: diabetes, heart disease, high cholesterol, cancer, and�much more controversially�mental illness and autism. In late 2018, Genomic Prediction, a company in New Jersey, began offering to screen embryos for risk of hundreds of conditions, including schizophrenia and intellectual disability, though it has since quietly backtracked on the latter. The one test customers keep asking for, the company�s chief scientific officer told me, is for autism. The science isn�t there yet, but the demand is.

The politics of prenatal testing for Down syndrome and abortion are currently yoked together by necessity: The only intervention offered for a prenatal test that finds Down syndrome is an abortion. But modern reproduction is opening up more ways for parents to choose what kind of child to have. PGT is one example. Sperm banks, too, now offer detailed donor profiles delineating eye color, hair color, education; they also screen donors for genetic disorders. Several parents have sued sperm banks after discovering that their donor may have undesirable genes, in cases where their children developed conditions such as autism or a degenerative nerve disease. In September, the Georgia Supreme Court ruled that one such case, in which a sperm donor had hidden his history of mental illness, could move forward. The �deceptive trade practices� of a sperm bank that misrepresented its donor-screening process, the court ruled, could �essentially amount to ordinary consumer fraud.�

August Bryde Christensen, age 4
August Bryde Christensen, who is 4, was born after his parents were told that the odds of Down syndrome were extremely low. His father says he�s relieved they didn�t know. (Julia Sellmann)
Garland-Thomson calls this commercialization of reproduction �velvet eugenics��velvet for the soft, subtle way it encourages the eradication of disability. Like the Velvet Revolution from which she takes the term, it�s accomplished without overt violence. But it also takes on another connotation as human reproduction becomes more and more subject to consumer choice: velvet, as in quality, high-caliber, premium-tier. Wouldn�t you want only the best for your baby�one you�re already spending tens of thousands of dollars on IVF to conceive? �It turns people into products,� Garland-Thomson says.

��

None of this suggests that testing should be entirely abandoned. Most parents choosing genetic testing are seeking to spare their children real physical suffering. Tay-Sachs disease, for example, is caused by mutations in the HEXA gene, which causes the destruction of neurons in the brain and spinal cord. At about three to six months old, babies begin losing motor skills, then their vision and hearing. They develop seizures and paralysis. Most do not live past childhood. There is no cure.

In the world of genetic testing, Tay-Sachs is a success story. It has been nearly eliminated through a combination of prenatal testing of fetuses; preimplantation testing of embryos; and, in the Ashkenazi Jewish population, where the mutation is especially prevalent, carrier screening to discourage marriages between people who might together pass on the mutation. The flip side of this success is that having a baby with the disease is no longer simple misfortune because nothing could have been done. It can be seen instead as a failure of personal responsibility.

Fertility doctors have spoken to me passionately about expanding access to IVF for parents who are fertile but who might use embryo screening to prevent passing on serious diseases. In a world where IVF becomes less expensive and less hard on a woman�s body, this might very well become the responsible thing to do. And if you�re already going through all this to screen for one disease, why not avail yourself of the whole menu of tests? The hypothetical that Karl Emil�s sister imagined, in which a child�s every risk is laid out, feels closer than ever. How do you choose between one embryo with a slightly elevated risk of schizophrenia and another with a moderate risk of breast cancer?

Not surprisingly, those advocating for preimplantation genetic testing prefer to keep the conversation focused on monogenic diseases, where single gene mutations have severe health effects. Talk of minimizing the risk of conditions like diabetes and mental illness�which are also heavily influenced by environment�quickly turns to designer babies. �Why do we want to go there?� says David Sable, a former IVF doctor who is now a venture capitalist specializing in life sciences. �Start with the most scientifically straightforward, the monogenic diseases�cystic fibrosis, sickle cell anemia, hemophilia�where you could define very specifically what the benefit is.�

What about Down syndrome, then, I asked, which can be much less severe than those diseases but is routinely screened for anyway? His answer surprised me, considering that he has spent much of his career working with labs that count chromosomes: �The concept of counting chromosomes as a definitive indicator of the truth�I think we�re going to look back on that and say, �Oh my God, we were so misguided.� � Consider the sex chromosomes, he said. �We�ve locked ourselves into this male-female binary that we enforced with XX and XY.� But it�s not nearly so neat. Babies born XX can have male reproductive organs; those born XY can have female reproductive organs. And others can be born with an unusual number of sex chromosomes like X, XXY, XYY, XXYY, XXXX, the effects of which range widely in severity. Some might never know there�s anything unusual in their chromosomes at all.

When Rayna Rapp was researching prenatal testing back in the �80s and �90s, she came across multiple sets of parents who chose to abort a fetus with a sex-chromosome anomaly out of fear that it could lead to homosexuality�never mind that there is no known link. They also worried that a boy who didn�t conform to XY wouldn�t be masculine enough. Reading about their anxieties 30 years later, I could sense how much the ground had moved under our feet. Of course, some parents might still have the same fears, but today the boundaries of �normal� for gender and sexuality encompass much more than the narrow band of three decades ago. A child who is neither XX nor XY can fit into today�s world much more easily than in a rigidly gender-binary one.

Both sex-chromosome anomalies and Down syndrome were early targets of prenatal testing�not because they are the most dangerous conditions but because they were the easiest to test for. It�s just counting chromosomes. As science moves past this relatively rudimentary technique, Sable mused, �the term Down syndrome is probably going to go away at some point, because we may find that having that third 21 chromosome maybe does not carry a predictable level of suffering or altered function.� Indeed, most pregnancies with a third copy of chromosome 21 end as miscarriages. Only about 20 percent survive to birth, and the people who are born have a wide range of intellectual disabilities and physical ailments. How can an extra chromosome 21 be incompatible with life in some cases and in other cases result in a boy, like one I met, who can read and write and perform wicked juggling tricks with his diabolo? Clearly, something more than just an extra chromosome is going on.

As genetic testing has become more widespread, it has revealed just how many other genetic anomalies many of us live with�not only extra or missing chromosomes, but whole chunks of chromosome getting deleted, chunks duplicated, chunks stuck onto a different chromosome altogether, mutations that should be deadly but that show up in the healthy adult in front of you. Every person carries a set of mutations unique to them. This is why new and rare genetic diseases are so hard to diagnose�if you compare a person�s DNA with a reference genome, you come up with hundreds of thousands of differences, most of them utterly irrelevant to the disease. What, then, is normal? Genetic testing, as a medical service, is used to enforce the boundaries of �normal� by screening out the anomalous, but seeing all the anomalies that are compatible with life might actually expand our understanding of normal. �It�s expanded mine,� Sable told me.

Grete F�lt-Hansen and her son, Karl Emil dance in three photos
Grete F�lt-Hansen and her son, Karl Emil, have met many expecting parents who are deciding what to do after a prenatal diagnosis of Down syndrome. (Julia Sellmann)

Sable offered this up as a general observation. He didn�t think he was qualified to speculate on what this meant for the future of Down syndrome screening, but I found this conversation about genetics unexpectedly resonant with something parents had told me. David Perry, a writer in Minnesota whose 13-year-old son has Down syndrome, said he disliked how people with Down syndrome are portrayed as angelic and cute; he found it flattening and dehumanizing. He pointed instead to the way the neurodiversity movement has worked to bring autism and ADHD into the realm of normal neurological variation. �We need more kinds of normal,� another father, Johannes Dybkj�r Andersson, a musician and creative director in Copenhagen, said. �That�s a good thing, when people show up in our lives��as his daughter, Sally, did six years ago��and they are just normal in a totally different way.� Her brain processes the world differently than his does. She is unfiltered and open. Many parents have told me how this quality can be awkward or disruptive at times, but it can also break the stifling bounds of social propriety.

Stephanie Meredith, the director of the National Center for Prenatal and Postnatal Resources at the University of Kentucky, told me of the time her 20-year-old son saw his sister collide with another player on the basketball court. She hit the ground so hard that an audible crack went through the gym. Before Meredith could react, her son had already leapt from the bleachers and picked his sister up. �He wasn�t worried about the rules; he wasn�t worried about decorum. It was just responding and taking care of her,� Meredith told me. She had recently been asked a simple but probing question: What was she most proud of about her son that was not an achievement or a milestone? The incident on the basketball court was one that came to mind. �It doesn�t have to do with accomplishment,� she said. �It has to do with caring about another human being.�

That question had stayed with Meredith�and it stayed with me�because of how subtly yet powerfully it reframes what parents should value in their children: not grades or basketball trophies or college-acceptance letters or any of the things parents usually brag about. By doing so, it opens the door to a world less obsessed with achievement. Meredith pointed out that Down syndrome is defined and diagnosed by a medical system made up of people who have to be highly successful to get there, who likely base part of their identity on their intelligence. This is the system giving parents the tools to decide what kind of children to have. Might it be biased on the question of whose lives have value?

��

When mary wasserman gave birth to her son, Michael, in 1961, kids with Down syndrome in America were still routinely sent to state institutions. She remembers the doctor announcing, �It�s a mongoloid idiot��the term used before chromosome counting became common�and telling her �it� should go to the state institution right away. Wasserman had volunteered for a week at such an institution in high school, and she would never forget the sights, the sounds, the smells. The children were soiled, uncared for, unnurtured. In defiance of her doctor, she took Michael home.

The early years were not easy for Wasserman, who was a divorced mother for much of Michael�s childhood. She worked to support them both. There weren�t really any formal day cares then, and the women who ran informal ones out of their homes didn�t want Michael. �The other mothers were not comfortable,� one of them told her after his first week. Others rejected him outright. She hired private babysitters, but Michael didn�t have playmates. It wasn�t until he was 8, when a school for kids with disabilities opened nearby, that Michael went to school for the first time.

Michael is 59 now. The life of a child born with Down syndrome today is very different. State institutions closed down after expos�s of the unsanitary and cruel conditions that Wasserman had glimpsed as a high-school student. After children with disabilities go home from the hospital today, they have access to a bevy of speech, physical, and occupational therapies from the government�usually at no cost to families. Public schools are required to provide equal access to education for kids with disabilities. In 1990, the Americans With Disabilities Act prohibited discrimination in employment, public transportation, day cares, and other businesses. Inclusion has made people with disabilities a visible and normal part of society; instead of being hidden away in institutions, they live among everyone else. Thanks to the activism of parents like Wasserman, all of these changes have taken place in her son�s lifetime.

Does she wish Michael had had the opportunities that kids have now? �Well,� she says, �I think maybe in some ways it was easier for us.� Of course the therapies would have helped Michael. But there�s more pressure on kids and parents today. She wasn�t shuttling Michael to appointments or fighting with the school to get him included in general classes or helping him apply to the college programs that have now proliferated for students with intellectual disabilities. �It was less stressful for us than it is today,� she says. Raising a child with a disability has become a lot more intensive�not unlike raising any child.

I can�t count how many times, in the course of reporting this story, people remarked to me, �You know, people with Down syndrome work and go to college now!� This is an important corrective to the low expectations that persist and a poignant reminder of how a transforming society has transformed the lives of people with Down syndrome. But it also does not capture the full range of experiences, especially for people whose disabilities are more serious and those whose families do not have money and connections. Jobs and college are achievements worth celebrating�like any kid�s milestones�but I�ve wondered why we so often need to point to achievements for evidence that the lives of people with Down syndrome are meaningful.

When I had asked Grete F�lt-Hansen what it was like to open up her life to parents trying to decide what to do after a prenatal diagnosis of Down syndrome, I suppose I was asking her what it was like to open up her life to the judgment of those parents�and also of me, a journalist, who was here asking the same questions. As she told me, she had worried at first that people might not like her son. But she understands now how different each family�s circumstances can be and how difficult the choice can be. �I feel sad about thinking about pregnant women and the fathers, that they are met with this choice. It�s almost impossible,� she said. �Therefore, I don�t judge them.�

Karl Emil had grown bored while we talked in English. He tugged on Grete�s hair and smiled sheepishly to remind us that he was still there, that the stakes of our conversation were very real and very human.

This article appears in the December 2020 print edition. It was first published online on November 18, 2020.

SARAH ZHANG is a staff writer at The Atlantic.

# ? Nov 22, 2020 18:07

Pick: Jul 19, 2009; Nap Ghost

A view at this by Jill Filipovic:

Invisible Women posted:

Two stories are on my mind this week: This one in the Atlantic, The Last Children of Down Syndrome, about how a national program of prenatal testing has has resulted in remarkably few births to children with Down syndrome in Denmark, and this one in the Times, about how American women have been hit particularly hard by the pandemic, almost entirely because of their caregiving duties. Both lay bare one essential truth: When caregiving overwhelmingly falls on women, we see a series of negative consequences � not least among them that social judgments about caregiving, and penalties for being perceived as an inadequate caregiver, overwhelmingly fall on women.

The Atlantic piece has, in particular, been turning over in my head all week. It�s beautifully written and deeply empathetic; Sarah Zhang, its author, goes to great lengths to not frame it as an argument for or against the legal right to abortion, but rather as a look at complex questions of what kinds of children people choose to have when they have the ability to choose, and what we might collectively lose in this calculus. Zhang�s conclusion seems to be that raising a child with Down syndrome is actually often not as dire as many potential parents imagine, and that whatever the individual decision-making process of women who terminate pregnancies after a Down syndrome diagnosis, the outcome � a world that has fewer children with Down syndrome in it � is a worse one. And I think most people would agree that a world with lots of different kinds of people in it is a richer one.

What�s missing, though, is a deeper look at what�s really behind the choice to terminate a Down syndrome pregnancy � and an honest accounting of why this particular issue feels so difficult and sensitive.

The stories of women who ended their pregnancies were clearly tough for Zhang to find, and she says as much in the piece. It�s interesting that, although a large majority of women whose prenatal tests come back showing a high likelihood of Downs end those pregnancies, virtually no women were willing to talk about it on the record. Zhang touches on this, the stigma of not being �the type of person who would choose to have a child with a disability,� when she writes about white women in the 1980s and 1990s who were often the first in their families to work for pay, who often had careers they cared about, who were marrying and having children later, and who were the first women in their maternal lines to, as one researcher puts it, �imagine voluntary limits to their commitments to their children.� When women actually exercise those voluntary lines, though, it�s framed as �selfishness.� Women themselves internalize that framing, and report feeling �guilt, guilt, guilt.�

We�ve moved, a bit, on how reproductive selfishness gets defined. Contraception is more or less acceptable � preventing a pregnancy you don�t want, for whatever reason, is fine. Abortion, though, is treated far differently, and folks especially but certainly not exclusively on the right are obsessed with the reasons a woman has for ending a pregnancy (the reasons seem to range from bad to worse). Someone who terminates simply because she doesn�t feel ready for a child (or another child) at this particular moment in her life � the reason most women have abortions � is selfish in her choice and irresponsible for getting into that predicament in the first place (how it would be better for this apparently selfish, irresponsible woman to be forced into involuntary motherhood is a question that goes largely unanswered). Someone who terminates a previously wanted pregnancy because her fetus is likely to have Down syndrome? She is seen as beyond selfish, having violated, as Zhang puts it, �the ideal of a good mother as one who places no limits on her devotion to her children.�

The rest of the article, though, glosses over why women may place this particular limit on her devotion to her children.

Women are still the primary caregivers for children, whether those women work or not, and whether they have male partners or not. We�ve seen just how significant and imbalanced this burden is during the Covid-fueled recession: With schools and childcare centers closed down, it is overwhelmingly women who have scaled back or dropped out of the workforce. Many of these women will never get their jobs back; many will face life-long economic insecurity stemming from this �choice;� all of them are making these choices in constrained circumstances, some caused by lack of basic social support, and some caused by male partners who simply will not do their fair share. There are 4.5 million fewer women in the workforce now than there were a year ago. A third of unemployed women of childbearing age say that they are not in the workforce because they�re caring for their kids.

It is true that, even under the best of circumstances, �parenting is a plunge into the unknowable and uncontrollable.� But it is also the reality that parenting a child with a disability like Down syndrome comes with some very knowable challenges. Ideally, we would have robust resources on offer, and in some places (like Denmark and even the more liberal parts of the U.S.), the resources are there. But still, navigating the bureaucracy of the educational system, of the healthcare system, or therapists, of estate planning, of figuring out what to do if the usual course of life happens and you die before your adult child does. The people tasked with the physical care of children, and the significant work of advocating for a child the system is not set up for, are overwhelmingly women. In Zhang�s story, I was struck by the fact that nearly every person she interviewed who was the primary caregiver of a child with Down syndrome was female � even in the very feminist Denmark.

While we expect that women will do the bulk of the caregiving, we also give women little in the way of a safety net. Surely Denmark is better than the U.S., but still, women pay a significant price when they forgo paid work for at-home labor. It leaves them financially dependent, usually on male partners, which in turn makes them more susceptible to abuse and exploitation. It means that when these women get divorced � and many do wind up divorced � they are financially vulnerable, and much more likely to wind up living in poverty than either their exes or women who work for pay. And we know that caregiving is gendered: Men, for example, are much likelier than women to divorce a spouse who has cancer � women stay and care for sick husbands; husbands leave sick wives.

And we know that women tend to be better at assessing their own lives than those who are looking in from the outside. The Turnaway Study, a comprehensive comparison of outcomes between women who sought later abortions and were able to get them, and women who sought later abortions and were turned away, tells us a lot. Compared to the women who were legally compelled to give birth, the women who ended their pregnancies were more likely to have gotten out of poverty and less likely to have fallen into it; they were less likely to be in abusive relationships; they were psychologically and emotionally better off. The women who were raising children they hadn�t wanted to birth of course loved their children, and I imagine many would say they couldn�t imagine their lives without them; and yet their lives were less stable and more violent, just as they had feared.

It�s easy to brand a woman �selfish� for worrying that raising a child with special needs may mean a fundamental giving up of life as she knows it � her job, possibly her marriage, possibly her ability to be as full and present a parent as she would like to be for her other children. What kind of mother, after all, would choose any of those things over her child? (We don�t ask these same questions of fathers). But these things � a job, a career, passion, a partnership, time for oneself � have long been on offer for men, including fathers, and are not mere extravagances and indulgences that women have been permitted. They are the things that make up a life.

The feminist writer Katha Pollitt also adds another layer of complication. �The funny thing is, if you could take a pill pre-conception that would prevent you from conceiving a child with DS no one would have a problem with it. After all, pregnant women take folic acid so they won't have a child with spina bifida,� she tweeted. �Nobody says spina bifida is just a variation in the wonderful tapestry of life and it will be a sad day when no such children are born and a slippery slope on the way to designer babies. As a society and individually, we do a lot to have healthy children who are not disabled. But if the problem with aborting a DS fetus is that it leads to far fewer such children, the effect is the same as if there was a pill to prevent the chromosomal variation that causes DS.�

Does the worth and dignity of people with disabilities hinge on the argument that we have falsely and unfairly deemed some characteristics more desirable than others? Do we have, as Fredrik deBoer argues in his book, �a cult of smart� that has �created and perpetuated an unjust class structure based on intellectual ability�? Is the entire concept of �health� itself an ableist one? (For the record, I don�t think so).

And finally, there is the biggest and most difficult question, which is: What happens after I die? Of course nothing is guaranteed. Of course any child can struggle. Of course some adults with Down syndrome do live independently. But many do not, and the average person with Down syndrome lives to be 60. That, too, is a tremendous burden on a parent, to bring a child into the world without knowing how that child will be cared for after you�re gone � to know that we do lack the structures to fully care for adults with special needs, to know that a beloved child could wind up institutionalized or living in circumstances you would never choose but that are wholly out of your control. If this were a situation I were facing, �what happens when I�m gone?� is this question that would be at the top of my mind. And it might be a question with an answer so devastating I would take affirmative steps to avoid facing it.

All of which is to say: It�s very easy to talk about women making a �choice,� or women being selfish for what they choose. The reality of what these �choices� that often don�t feel like choices at all actually mean for women and their families are much more complex, as are the thornier moral questions here.

It may be the case that while there is tremendous overlap, there may also simply be some areas of tension between the disability rights movement and the feminist movement. The solution you often hear from both sides � one I�ve also posited � is �more support.� Better healthcare, better education systems, more robust support all around so that caring for children generally, and children with disabilities in particular, isn�t so incredibly individualized, and doesn�t require so much work and so much sacrifice from individual parents. The thing is, though, that Denmark has many of these ideal systems in place. And yet.

The stubborn reality is that much of this does come down to discomfort with women choosing something other than sacrificing themselves for their children � and especially discomfort with abortion. As Katha argued, we don�t hand-wring over women taking folic acid to prevent certain disabilities; I have to imagine we wouldn�t be all that worried if we were preventing the fertilization of an egg with a chromosomal issue. Some 80 percent of pregnancies where the embryo or fetus has a third 21 chromosome � the issue that causes Down syndrome � end in miscarriage. If you�re generally anti-abortion, then it makes sense to judge women who end pregnancies because of a high Down syndrome risk (it makes far less sense to show no concern for the many embryos that are naturally expelled from women�s bodies, but that�s a discussion for another day). But if you�re not legally or morally opposed to abortion, it is worth asking why this particular issue is cause for such concern, if it�s not wrapped up in deep assumptions about abortion, womanhood, and maternal obligation. It�s certainly worth asking why the supposedly �pro-life� folks who want to force women to birth children against their will and try to ban �disability-selective abortions� are also willing to argue that people with disabilities should not have the right to make decisions about their own health, which includes the right to bear and parent their own children (here is some required reading on that important topic).

This conversation might be different if women weren�t the ones doing the majority of the world�s care work. It would certainly be different if women weren�t the ones doing close to 100% of the world�s childbearing. But with the world as it is, and with how slowly norms around caregiving and gendered work actually change, the people who bear and care for children shouldn�t also be shouldered with carrying the heaviest of our moral questions.

# ? Nov 22, 2020 18:07

Pick: Jul 19, 2009; Nap Ghost

Recession with a Difference:

quote:

Recession With a Difference: Women Face Special Burden
Hit hard by job losses and the pandemic�s effect on schooling and child care, American women face short-term difficulties and long-term repercussions.

For millions of working women, the coronavirus pandemic has delivered a rare and ruinous one-two-three punch.

First, the parts of the economy that were smacked hardest and earliest by job losses were ones where women dominate � restaurants, retail businesses and health care.

Then a second wave began taking out local and state government jobs, another area where women outnumber men.

The third blow has, for many, been the knockout: the closing of child care centers and the shift to remote schooling. That has saddled working mothers, much more than fathers, with overwhelming household responsibilities.

�We�ve never seen this before,� said Betsey Stevenson, a professor of economics and public policy at the University of Michigan and the mother of a second grader and a sixth grader. Recessions usually start by gutting the manufacturing and construction industries, where men hold most of the jobs, she said.

The impact on the economic and social landscape is both immediate and enduring.

The triple punch is not just pushing women out of jobs they held, but also preventing many from seeking new ones. For an individual, it could limit prospects and earnings over a lifetime. Across a nation, it could stunt growth, robbing the economy of educated, experienced and dedicated workers.

Inequality in the home � in terms of household and child care responsibilities � influences inequality in the workplace, Misty L. Heggeness, a principal economist at the Census Bureau, concluded in a working paper on the pandemic�s impact for the Federal Reserve Bank of Minneapolis. Without a more comprehensive system of support, she said, �mothers will forever be vulnerable to career scarring during any major crisis like this pandemic.�

The latest jobs report from the Labor Department showed that some of the damage was reversed last month as the service industry revived, nudging down the jobless rate for women to 6.5 percent, slightly below men�s. But there were still 4.5 million fewer women employed in October than there were a year ago, compared with 4.1 million men.

And according to the Census Bureau, a third of the working women 25 to 44 years old who are unemployed said the reason was child care demands. Only 12 percent of unemployed men cited those demands.

Laci Oyler has felt that pressure. Her husband, employed by a large printing company, was already working from home when the pandemic shuttered day care and schools in Milwaukee. But after two days of taking care of their two young sons, �he said, �Absolutely no way,�� Ms. Oyler explained. So she cut her weekly hours as a mental health counselor for Alverno College, a small Catholic institution, to five from 32.

In August, when she learned that public schools would continue to offer only online classes for the fall, Ms. Oyler decided she had little choice but to take an unpaid leave.

This month, she decided to resign.

�Work is so much more than what you�re taking home as payment,� Ms. Oyler said. �But when you look at that bottom line of risk versus reward, it doesn�t seem worth it,� she added, referring to the cost of child care combined with the possibility of coronavirus infection for her or her children.

As a licensed professional, Ms. Oyler does not expect to have difficulty returning to the work force when she is ready. But for most working women, dropping out to take care of children or other family members exacts a sizable toll, several studies have shown. Rejoining is hard, and if women do, they generally earn less and have less security. And the longer someone is out of work, the tougher it is to get back in.

Claudia Goldin, an economics professor at Harvard, said this was the first recession where the economy was so intertwined with the network of child care.

�During the Great Depression, no one cared about the care sector,� she said. �Women weren�t in the labor force, and they weren�t supposed to be.�

One reason that Congress started giving financial assistance to poor households headed by women in the 1930s, under a program originally titled Aid to Dependent Children, was so they could stay home with their children and not compete with men for jobs, Ms. Goldin said.

Only during World War II, when women were urgently needed in factories and offices to replace men who were in the military, did the government establish a far-reaching federally subsidized network of nurseries and child care centers in nearly every state. Once the war ended, so did the support.

�You cannot have a contented mother working in a war factory if she is worrying about her children, and you cannot have children running wild in the streets without a bad effect on the coming generations,� Senator Carl Hayden, an Arizona Democrat, testified in 1943.

Women make up roughly half of the country�s work force. They range from entry-level to professional, they live in urban, suburban and rural areas, and they often care for toddlers and teenagers. But the burdens of the pandemic-induced recession have fallen most heavily on low-income and minority women and single mothers.

Members of these overlapping groups often have the most unpredictable schedules, and the fewest benefits, and are least able to afford child care. They fill most of the essential jobs that cannot be done from home and, therefore, carry the most risk for exposure to the virus. At the same time, they make up a disproportionate share of the service industries that have lost the most jobs. The jobless rate is 9.2 percent for Black women and 9 percent for Hispanic women.

When the pandemic caused housecleaning jobs to dry up, Andrea Poe was able to find cleaning work at a resort in Orange Beach, Ala., about a 45-minute drive from Pensacola, Fla., where she and her 14-year-old daughter, Cheyenne Poe, had moved in with an older daughter, her fianc� and their five children.

The families were behind in the rent and threatened with eviction when Hurricane Sally ripped through the coast in September. To escape the floods, they piled into two cars, drove to Biloxi, Miss., and spent five nights in a Walmart parking lot.

Now Ms. Poe and Cheyenne, who has turned 15, are in Peoria, Ariz., living in a room in her mother�s trailer.

She said she was applying for jobs every day, so far without luck. And the bills keep coming. Ms. Poe has missed two consecutive loan payments on her car and worries that it will be repossessed.

�I�m just hoping my unemployment checks come through so my car doesn�t get taken away,� she said. �If I lose my car, I�ll never be able to get a job.�

Women with more resources are in a better position, but they struggle in other ways.

When the pandemic ripped through Seattle and compelled Kenna Smith, 37, to work from home, she initially saw one upside � a chance to spend more time with her 3-year-old son.

�At first, I thought I�d just focus on my child,� said Ms. Smith, who had just started a branding and design company, Wildforth Creative. �It was fun for a while, but then the stress was intense.�

Like many families who were worried about the risk of infection or short of money and space, Ms. Smith and her husband let their son�s nanny go. Her husband, project manager for a general contractor, worked out of their bedroom.

�I�m not sure why it totally fell on me,� Ms. Smith said of child care. �I�m out in the living room, dining room area with a whole bunch of toys strewn about, with my laptop, trying to run my business.

�I was wanting to work and wanting my business to succeed so badly,� she said. �I didn�t realize. �� She paused, interrupted by a voice: �Mommy, I want some applesauce.�

The couple recently decided to hire a part-time nanny, concluding that despite the expense, it was the only way both could keep working. (Ms. Smith�s sister is also helping out.)

From 2015 until the pandemic, women�s increasing participation in the work force was a primary driver of the economy�s expansion, said Ms. Stevenson, the Michigan economist. �It�s why the economy grew the way it did, why employers could keep hiring month after month,� she said.

Since February, women�s participation in the labor force has been falling, with the biggest decreases among women without college degrees who have children.

Changes forced on women by the pandemic elicit a mixture of anxiety and hope.

Many women worry that the changes will sharply narrow women�s choices and push them unwillingly into the unpaid role of full-time homemaker.

And the impact could stretch over generations, paring women�s retirement savings, and reducing future earnings of children now in low-income households.

�We are creating inequality 20 years down the line that is even greater than we have today,� said Ms. Stevenson, who was a member of President Barack Obama�s Council of Economic Advisers. �This is how inequality begets inequality.�

Yet there is also the possibility that the mounting pressures could create momentum to complete the unfinished project of fully integrating women into the work force by providing a system of family support � like affordable child care and paid parental and sick leave.

�I think we�re really at a crossroads,� said Julie Kashen, director for women�s economic justice at the Century Foundation and one of the authors of a new report on the pandemic and working women. �We�ve never built a workplace that worked for people with caregiving responsibilities.�

Pick fucked around with this message at 18:11 on Nov 22, 2020

# ? Nov 22, 2020 18:08

Pick: Jul 19, 2009; Nap Ghost

Note:

These articles are for extra flavor, and I do not consider them mandatory to participation like the preceding articles. Thank you! :siren:

Here's the Atlantic's other, older little bit: A Generational Shift in Understanding Life with Down's Syndrome

quote:

When I was six, my friend Tom died. My Mum took me aside when I got home from school and explained that he had gone into the hospital for routine surgery but something had gone wrong. She said it was just as well that he had died. You see, Tom had Down syndrome.

I don't mean to slander my mother. Like my father, she thought this was humane and rational -- that we should not cling to life if that life is one of terrible suffering. She was repeating the conventional wisdom of the day, and that wisdom said that if you had Down syndrome, your life was not worth living. Others who ought to have known better were often worse. In the eyes of many doctors, children with Down syndrome were burdens that would bring only disappointment to their families and they pressed parents to put their children in institutions and tell everyone that the baby had died. These children, it was believed, would never be any use to anyone, and their birth was treated as a tragedy.

My daughter Hazel was born with Down syndrome five years ago. I found myself thinking of Tom a lot in the months that followed her birth. My wife and I, and especially Hazel, are lucky that things have changed since Tom died. Hazel has had an array of specialists who have helped her learn to walk and talk and she goes to a regular elementary school with other 'normal' kids. She still has challenges. We haven't got her potty-trained yet. On the other hand, she knows her alphabet and she can count better than some of her classmates. She likes learning and she is enthusiastic about going to school. Much more than I ever was. I hated school.

We were also lucky that the head of the pediatric intensive care unit where Hazel spent her first month of life had a positive outlook on children with Down Syndrome. I remember him telling us not to place limits on what she could do, his relief when it became clear we were committed to our daughter. You see, old attitudes persist. Some people still believe that children with Down syndrome are a burden, their lives not worth living. A lot of people, to judge by message boards under articles about pregnancy screening. The problem is compounded by the doctors who present prospective parents with a uniformly gloomy outlook. Many parents of kids with Down syndrome can attest to this. In some cases, rather than congratulations new parents get a barrage of health statistics and there is still often an assumption by medical professionals that women carrying a child with Down syndrome will terminate the pregnancy. Around 80 percent of women who get a positive test for Down syndrome still choose to have an abortion. Yet I cannot think of any parents of a child with Down syndrome who would give them up for anything.

Love has a way of making statistics irrelevant, and it brings its own kind of knowing. I do not love my daughter any less because she has Down syndrome. Her diagnosis says very little about who she is. She is not a disease or a syndrome but an individual: affectionate, naughty, infuriating at times, stubborn, self-willed and utterly charming. Certainly she has medical problems and developmental challenges not faced by other children. I'm not saying those don't exist. But they're one part of a much bigger picture.

This is not intended as an argument against abortion. It is an argument for giving prospective parents of children with Down syndrome a full picture of what their life will be like. It includes a lot of work. Their child will likely have more medical problems due to their condition, and it will take time and effort to reach developmental milestones that other parents take for granted. But all these challenges are manageable, especially with the level of support available now. Expecting parents need at least to talk to the family of a child with Down syndrome. Otherwise they cannot know what it is like or what to expect. Statistics cannot tell you this.

It is also an argument for changing attitudes that appear self-evident to too much of the general population. You cannot know if someone else's life is worth living without asking them and without even knowing them. A disability does not necessarily stop you living a full, satisfying life. Oddly enough, I'm not sure that disabilities have anything to do with living full satisfying lives. When it comes to Hazel, her life is not a burden to her family but an unending source of delight. For my part, I cannot imagine life without her. But most importantly, her life is valuable to herself, and definitely worth living.

As well as yet other Atlantic piece, "A Pill For Down's Syndrome".

quote:

Ten years ago, our daughter Penny was born. She came into the world with a shock of black hair, piercing blue eyes, and, within hours, a diagnosis of Down syndrome.

We learned the biology quickly: Down syndrome is the popular name for trisomy 21, the presence of three copies of the 21st chromosome instead of the typical two. When she was only a few hours old, the doctors told us she would experience some health problems and cognitive delays. The range of those problems was unpredictable.

�Would you take away the Down syndrome if you could?� I asked myself, and my husband, regularly. At first, the answer seemed obvious. What mother wouldn�t make life easier for her child? What father wouldn�t want his daughter�s life free of obstacles and challenges? Then we started to get to know Penny�her thoughtfulness and humor, her love for books and cheeseburgers, her delight in climbing rocks and holding hands. We started to consider how changing her chromosomal makeup would change her, and as time went on, what had once been an obvious question became more complicated. Eventually, it seemed irrelevant.

Now Penny is 10, and I recently encountered that question once more, when I read about a new study in the journal Neuron explaining some of the structural distinctions in the brains of people with trisomy 21. Researchers took 15 postmortem brains of people with Down syndrome from across the life span�from fetus to toddler to adolescent to adult�and paired each one with a brain from a typically developing patient. Comparing each brain to its partner, they found that the brains of people with Down syndrome had an overall reduction in the �density of myelinated fibers.� Myelin is the white substance that coats axons, the spokes that connect neurons to one another. A reduction in myelin has been linked to a variety of neurological conditions, including multiple sclerosis and Guillain-Barre syndrome, among others.

And a few drugs related to myelin production are already in clinical trials, which means that what was once a parlor game�would you take away the Down syndrome?�may one day be a reality for parents like us. If and when drugs are developed that reverse myelin loss specifically in people with Down syndrome, we�ll join the many other parents of children with brain differences who face similar quandaries. There�s the ongoing debate within the autism community, for example, over whether autism is a brain disorder or a mark of �neurodiversity� that ought to be celebrated. There�s the back-and-forth of parents and educators over whether to medicate children with ADHD. And there�s the rise in use of anti-anxiety drugs and antidepressants among children.

In all of these areas, parents face a series of questions about our responsibility in caring for and shaping our children: Are we forming them into the people they want to be, or asking them to conform to a narrow social notion of who they ought to be?

In my first year as a mother, I threw myself into the technical and philosophical literature about disability, eventually encountering the phrase �social construction of disability.� I didn�t understand the concept at first. Disability seemed to me a simple marker of biology. But in books like Michael Berube�s Life as We Know It, a memoir by a father who is raising a son with Down syndrome, I started to see that disability was not as fixed as I had assumed. Without eyeglasses, for example, many more people in our population would be considered disabled�the common challenge of compromised vision has led to technology that enables people to see, even when their biology prevents them from doing so. Similarly, technology has enabled people with prosthetic limbs to walk and climb and run and dance. And for kids like Penny, who have trouble learning math concepts, the problems can be overcome with different teaching approaches. Much of what typical people call disability could just as easily be called difference that society is unwilling to accommodate.

Many individuals with intellectual disabilities once fell so far outside the mainstream of society that they literally lived apart from everyone else. As recently as the 1970s, babies with Down syndrome were routinely sent to institutions shortly after birth. Now they receive �early intervention� through therapy and support at home. Similarly, the Individuals with Disabilities Education Act (IDEA) of 1975 mandated inclusion in public schools for almost all individuals with disabilities, many of whom had been excluded before. Though plenty of progress is still needed, social changes have alleviated much of the suffering and exclusion experienced by people with intellectual disabilities like Down syndrome.

Still, some of the suffering experienced by people with disabilities does not fit so easily into a social-construction model. To give a mundane example: When Penny was 5 months old, we discovered she had hearing loss as a result of fluid in her ears. She was unable to hear and therefore unable to learn how to communicate; she was also in pain from the pressure of all that fluid in her head. We intervened with ear tubes.

But isolated incidents aside, does her intellectual disability cause her to suffer? And if it does, would neurological enhancement help alleviate her suffering? Or does it stem not from the impairment itself, but from the fact that people have excluded her for not thinking the same way they do? What�s more, intervening with the brain skirts close to intervening with the self. Would we change Penny�s personality if we offered her medication to change her brain?

When I spoke with Tarik Haydar, an associate professor of neurobiology at Boston University and one of the co-authors of the Neuron study, about his research, he acknowledged my concerns. �I just want to provide an option,� he said. �I want to develop something that provides families and people with Down syndrome with the ability to make a decision about whether they want to improve cognition for more independence.� I can�t say I�m opposed to having the choice. I just hope it comes alongside a recognition of the many options already available to enhance the lives of people with intellectual disabilities.

Last week, Penny came home from school with a new chapter book. We sat on the couch and took turns reading pages out loud from Fish in a Tree, by Lynda Mullaly Hunt. The story centers around a sixth-grade girl named Ally who has struggled all her life to learn how to read, and has to fend off the taunts of her classmates. It turns out Ally has dyslexia. Under the watchful eye of a new teacher, and through an alliance with some new friends who are also outside the social norm, she begins to recognize not only the way in which her brain doesn�t work, but also the gifts she has to offer due to her unusual way of seeing the world. In the midst of this recognition, her teacher says, �If you judge a fish on its ability to climb a tree, it will spend its whole life thinking that it�s stupid.�

Ally�s story, and Penny�s story, don�t negate the significance of these new neurological findings, or the fact that drug interventions for cognition will come as good news for some people with Down syndrome. I am not certain that Penny needs medical interventions to improve her cognition, but I know she needs a social context that welcomes her. I also don�t know if any drugs for cognition will become available in Penny�s adolescence, and I don�t know whether we would offer them to her. I do know that in the meantime, as the parents of a daughter who sees the world differently, we will continue to challenge ourselves to expand our definition of who belongs.

# ? Nov 22, 2020 18:14

Pick: Jul 19, 2009; Nap Ghost

Some New York Times opinion responses they published:

quote:

Chris Kaposy makes an ethical case for having a baby with Down syndrome, urging expectant parents whose child has been diagnosed in utero not to abort the affected fetus. As the father of a child with the anomaly, he knows the �delight he brings to our lives� and wonders �why more people do not choose to bring children like him into the world.�

What he does not mention are the medical complications faced by such children: higher rates of congenital heart disease, gastrointestinal abnormalities, leukemia and autoimmune diseases. Worst of all, individuals with Down syndrome are prone to develop early dementia.

Mr. Kaposy lives in Canada, where there is universal health care. An American family might well be bankrupted by raising a Down syndrome child. The financial and emotional needs of an affected child may be more than they can bear. A child who can never live independently requires considerable financial resources, and how to provide him or her with a secure and happy future after the parents are gone is a source of constant worry.

All of these factors must be considered in the decision whether to bear a Down syndrome child or not, and neither choice is more ethical than the other.

DEBORAH BOREK
KANSAS CITY, MO.

The writer is a pathologist.

To the Editor:

My daughter, Stephanie, now almost 38, has Down syndrome. She is very capable, being close to independent. Genetic counseling was not available to my family before she was born. But the fact that she has been a wonderful daughter does not indicate to me that anyone should be able to decide for a couple or single mom that they are required to have a child with issues, whatever they may be.

Not all Down syndrome people have it so good. Many require near full-time support. But generally I agree with Chris Kaposy that it should remain a personal choice for the person who will be required to be a parent for life. Not all parents are emotionally equipped to become permanent caregivers.

JOHN BLAIR, EVANSVILLE, IND.

To the Editor:

Reading Chris Kaposy�s deeply moving essay �We Chose Our Child� highlights a question all parents should ask themselves: What constitutes a successful and meaningful life?

Our culture implicitly conveys a message that commonly accepted hallmarks of success such as �college, marriage, real estate, grandchildren� are typically unrealistic for children who have cognitive or developmental disabilities. Mr. Kaposy captures so beautifully the shortcomings in this value system.

The sense of being fully alive from loving and being loved with the purest of hearts and intentions is the greatest success and meaning imaginable. Take a look at a child with a disability. Chances are you will see purity of heart, unbridled wonder, curiosity and awe, an appreciation for kindness and human contact, humor, playfulness, soulfulness, and a complete lack of guile or hidden agenda. That�s the epitome of meaning and success to me.

# ? Nov 22, 2020 18:35

Pick: Jul 19, 2009; Nap Ghost

NYT article (2007) "Prenatal Test Puts Down Syndrome into Sharp Focus"

quote:

DETROIT � Sarah Itoh, a self-described �almost-eleven-and-a-half,� betrayed no trace of nervousness as she told a roomful of genetic counselors and obstetricians about herself one recent afternoon.

She likes to read, she said. Math used to be hard, but it is getting easier. She plays clarinet in her school band. She is a junior girl scout and an aunt, and she likes to organize, so her room is very clean. Last year, she won three medals in the Special Olympics.

�I am so lucky I get to do so many things,� she concluded. �I just want you to know, even though I have Down syndrome, it is O.K.�

Sarah�s appearance at Henry Ford Hospital here is part of an unusual campaign being undertaken by parents of children with Down syndrome who worry about their future in the face of broader prenatal testing that could sharply reduce the number of those born with the genetic condition.

Until this year, only pregnant women 35 and older were routinely tested to see if their fetuses had the extra chromosome that causes Down syndrome. As a result many couples were given the diagnosis only at birth. But under a new recommendation from the American College of Obstetricians and Gynecologists, doctors have begun to offer a new, safer screening procedure to all pregnant women, regardless of age.

About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.

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Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents is seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.

They are pressing obstetricians to send them couples who have been given a prenatal diagnosis and inviting prospective parents into their homes to meet their children. In Massachusetts, for example, volunteers in a �first call� network linking veteran parents to new ones are now offering support to couples deciding whether to continue a pregnancy.

The parent evangelists are driven by a deep-seated fear for their children�s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.

�We want people who make this decision to know our kids,� said Lucy Talbot, the president of a support group here who prevailed on the hospital to give Sarah and two teenage friends an audience. �We want them to talk to us.�

The focus on the unborn is new for most parent advocates, who have traditionally directed their energy toward support for the born. But after broader testing was recommended in January, the subject began to hijack agendas at local support group meetings.

A dwindling Down syndrome population, which now stands at about 350,000, could mean less institutional support and reduced funds for medical research. It could also mean a lonelier world for those who remain.

�The impact of these changes on the Down syndrome community is going to be huge,� said Dani Archer, a mother in Omaha who has set aside other Down syndrome volunteer work to strategize about how to reach prospective parents.

The 5,500 children born with Down syndrome each year in the United States suffer from mild to moderate mental retardation, are at high risk for congenital heart defects and a variety of other medical problems, and have an average life expectancy of 49. As adults, some hold jobs, but many have difficulty living independently.

�There are many couples who do not want to have a baby with Down syndrome,� said Deborah A. Driscoll, chief of the obstetrics department at the University of Pennsylvania and a lead author of the new recommendation from the obstetricians� group. �They don�t have the resources, don�t have the emotional stamina, don�t have the family support. We are recommending this testing be offered so that parents have a choice.�

But the richness of their children�s lives, parent advocates say, is poorly understood. Early medical intervention and new expertise in infant heart surgery stave off many health problems; legally mandated inclusion in public schools has created opportunities for friendship and fostered broader social awareness of the condition.

With no formal financing or organization, parents are arranging to meet with local obstetricians, rewriting dated literature and pleading with health care workers to give out their phone numbers along with test results. Medical professionals have for the most part responded with caution. Genetic counselors, who often give test results to prospective parents, say they need to respect patients who may have already made up their minds to terminate their pregnancy. Suggesting that they read a flyer or spend a day with a family, they say, can unnecessarily complicate what is for many a painful and time-pressured decision.

Their goal, parents say, is not to force anyone to take on the task of parenting a child with disabilities. Many participants in the ad-hoc movement describe themselves as pro-choice. Yet some see themselves as society�s first line of defense against a use of genetic technology that can border on eugenics.

�For me, it�s just faces disappearing,� said Nancy Iannone, of Turnersville, N.J., mother to four daughters, including one with Down syndrome. �It isn�t about abortion politics or religion, it�s a pure ethical question.�

Others admit freely to a selfish motive for their new activism. �If all these people terminate babies with Down syndrome, there won�t be programs, there won�t be acceptance or tolerance,� said Tracy Brown, 37, of Seattle, whose 2-year-old son, Maxford, has the condition. �I want opportunities for my son. I don�t know if that�s right or wrong, but I do.�

Ms. Brown has taken it upon herself to serve as a community resource on Down syndrome for prospective parents. She was encouraged when a counselor at the University of Washington Medical Center sent her an e-mail message recently with a question from a patient.

What developmental age equivalent, the patient wanted to know, do most people with Down syndrome reach?

For parents on an e-mail list where Ms. Brown solicited answers, the question underscored the difficulty in conveying the pleasure of parenting a child with Down syndrome to someone who has the option to reject it.

�Verbally,� wrote one mother of her teenager, �she�s at a 6-month level, but what 6-month-old do you know who can climb out a window and dance on a roof?!?!? We joke that she could climb Mt. Everest.�

�If someone had told me Sam would still be in diapers at age 5 � ugh � I probably would have died,� wrote another. �Living through it, not such a big deal. Because you don�t give birth to a 5-year-old, you grow with and love this kid for five years.�

Doctors have long recommended an amniocentesis test for pregnant women 35 and over, whose age puts them at greater risk for chromosomal defects. But because it carries a small risk of miscarriage, it has not been routinely offered to younger women, who give birth to the majority of children with Down syndrome.

Now, with a first-trimester sonogram and two blood tests, doctors can gauge whether a fetus has the extra 21st chromosome that causes Down syndrome with a high degree of accuracy and without endangering the pregnancy.

But many parents see expanded testing as a step toward a society where children like theirs would be unwelcome. The Newsweek columnist George F. Will labeled it a �search and destroy mission� for a category of citizens that includes his adult son, Jon Will.

Dr. Brian Skotko, a medical resident who has studied how mothers were told of prenatal diagnoses, found a high level of dissatisfaction. He said that most doctors have little or no training on how to relay a prenatal diagnosis of Down syndrome.

When he talked to obstetricians, geneticists and medical students at Massachusetts General Hospital in Boston about the subject last month, though, he was questioned sharply.

One doctor asked about studies suggesting there is a higher risk of early-onset Alzheimer�s disease in people with Down syndrome, potentially saddling parents with another caretaking burden as they themselves age. Others take issue with the notion that they do not give parents a balanced portrayal of the condition.

�It�s a mistake to say �your baby is going to be mentally retarded, you should have a pregnancy termination,� � said Dr. Allan Nadel, director of prenatal diagnosis at the hospital. �By the same token, I don�t think it�s quite fair to say �these are wonderful lovely human beings, you can deal with all of their problems and it�s not that big of a deal.� We strive to have the proper balance.�

Parent advocates have some advice: don�t begin with �I�m sorry,� or �I have bad news,� as many of their own doctors did.

Weeks after Patricia Lanter decided to continue her pregnancy, having learned that Down syndrome had been diagnosed in her fetus, her doctor reminded her that she could still get an abortion in Kansas if an ultrasound indicated the baby would need heart surgery. Ms. Lanter, an emergency physician from Norwich, Vt., has secured an invitation to lecture the obstetricians in her hospital this summer.

In Wilmington, Del., Kristin Pidgeon recalled her doctor�s gloomy forecast for a local hospital audience: �She may be able to count change for the bus,� he had said of her as-yet-unborn daughter. �But what�s going to happen when the bus doesn�t come?� (Her daughter Aliza, now 5, does not yet take the bus, Ms. Pidgeon said, but she does ride horses as part of her therapy.)

In the Detroit suburbs, Ms. Talbot is still working out the best strategy to drive her points home to medical professionals. When one doctor suggested she had chosen to show them only �high-functioning kids� like Sarah and her own daughter, Megan, she asked Trevor Taylor, who lacks the ability to communicate verbally, to join the lineup.

At the Henry Ford visit, Mr. Taylor, 19, a natural ham, acted out his speech as Megan, 18, read it, before hitting the music and signing along to �What a Wonderful World.�

# ? Nov 22, 2020 18:38

Pick: Jul 19, 2009; Nap Ghost

Anyway, here's my preliminary hot take:

It is a serious problem that economic decisions, particularly about parenthood/family, are framed as moral ones, and that this moral burden seems to fall primarily on women.

I engage in this topic as someone with a significant hereditary problem and I feel that context is significant here but my feelings aren't going to get hurt about whatever :v:

.

But anyway, good example of an intersectional issue!

With substandard support and care for people with disabilities, the "disability" question is inherently an economic one.
With substandard support and care for people with disabilities, and an increasingly-atomized society that puts more and more pressure on the individual household, overwhelmingly the mother, the "disability" question is a mental health care/physical welfare one for the caregivers.
With people, on the whole, exhausted either mentally, physically, or both, the risk associated with a variable diagnosis is very sharp (e.g., ok, will I get a happy and mostly functional Down's kid or one who is violent?)
Is abortion truly an individual issue (hint: yes :t:mad:), and if it's individual, how can we address society-wide outcomes as a result?
Down's Syndrome is one thing, but at what point will it be possible to be selective on, say, a purely aesthetic basis? Should any effort be made to address this? For example:

These two girls are twins.

Parents who wanted one baby, not two, might abort one (maybe they can't afford two). In that circumstance, they might feel the child on the left will have an easier life, and choose to abort the child on the right. Is this moral? If yes, yikes. But if no, then what's the point where aborting on the child's quality of life is justified versus not justified, and why?
Was selecting against Tay-Sachs good?
How do we protect and empathize with people in a discussion this fraught? Where's the common ground of people's values?

Pick fucked around with this message at 18:53 on Nov 22, 2020

# ? Nov 22, 2020 18:39

GhostofJohnMuir: Aug 14, 2014; anime is not good

it seems obvious to me that your preliminary hot take is pretty much correct and i think it would be pretty difficult to argue with. however, i think your subsequent first line, that the "disability" question is inherently an economic one, is a bit reductionist in that there are nuances to the economic concern that i think need to be captured

the thing that catches my attention is the assumptions that parents make about what is required to have a happy life, and the anxiety around hitting the "required" milestones to set your child up for happiness. this bit from the original story jumped out at me

quote:

Does she wish Michael had had the opportunities that kids have now? �Well,� she says, �I think maybe in some ways it was easier for us.� Of course the therapies would have helped Michael. But there�s more pressure on kids and parents today. She wasn�t shuttling Michael to appointments or fighting with the school to get him included in general classes or helping him apply to the college programs that have now proliferated for students with intellectual disabilities. �It was less stressful for us than it is today,� she says. Raising a child with a disability has become a lot more intensive�not unlike raising any child.

I can�t count how many times, in the course of reporting this story, people remarked to me, �You know, people with Down syndrome work and go to college now!� This is an important corrective to the low expectations that persist and a poignant reminder of how a transforming society has transformed the lives of people with Down syndrome. But it also does not capture the full range of experiences, especially for people whose disabilities are more serious and those whose families do not have money and connections. Jobs and college are achievements worth celebrating�like any kid�s milestones�but I�ve wondered why we so often need to point to achievements for evidence that the lives of people with Down syndrome are meaningful.

i think certain types of questions a woman considering an abortion might ask themselves, such as "can i provide for this child's immediate physical needs"; "can i provide the physical and emotional labor necessary to raise this child while still providing for myself and any other people i am already responsible for", are broadly similar regardless if the fetus is likely to have downs syndrome or not. the scope of the labor, and the difficulty in providing it while also self caring will be different depending on the diagnosis, but the general question is the same. but i feel like the increased economic and emotional demands on women don't fully explain the discrepancy between the general abortion rate and the 95% rate cited in the article. i don't have the time to do a deep dive on the statistics, but a quick google search led me to a paper form 2013 putting the abortion rate at 12.1 per 1000 women of traditional child bearing age. while this is a bit of an apples to oranges comparison on skimpy data, it does suggest that there is a very sharp selection against fetuses with potential for downs. it seems to me to that in a country with such a robust social safety net, the economic and emotional demands of having a child with downs can't be so ruinous as to require orders of magnitude more women to make the choice that they can't support such a child

there is a secondary concern that comes with potential disabilities, or even more generalized genetic disadvantages, which is "will i see my child suffer". and i think this is where people start letting the anxiety of parenthood run away with them.

you run the range of "you're certain to see you child die before puberty" to "your child may be slightly outside the societal norms when they have social interactions"

coming back around to the quote from earlier, i see a lot of the pressure of late stage capitalism in this. people with downs or autism are seen as less competitive in the marketplace (see the focus on college and jobs), and thus less likely to be happy. complementing this, the process of gathering lots of data and making a choice to minimize perceived inferior traits gives the squeezed middle classes a feeling of control in an out of control world in much the same ways as loading their child up with extracurriculars and college prep

i guess my conclusion would be that beyond society providing the material and emotional support to mothers necessary to make them feel secure in having a child, we need to change the lens through which we view success, worthiness, and happiness. which now that i've written it out, feels obvious

# ? Nov 22, 2020 20:09

Famethrowa: Oct 5, 2012

I don't have much to add, other then, as someone with a birth defect, the idea of aborting based on imperfection makes me nauseous, but that is entirely a visceral and personal response.

I fully believe abortions are healthcare, but the eugenics nature of pre-screening for birth defects gives me pause. Is there a difference between a blind abortion and an abortion after a chromosome test? The feels test is telling me yes.

I think ideally, we would live in a society where we will provide the material support for any mother who gives birth to a developmentally delayed child, and provide compensation for the emotional and physical labor of being a mother to all women who chose to have kids.

E. Thinking more, in our current society without social guiderails, it would be immoral to not allow women to opt out of the potentially disastrous financial burden of a child with down syndrome. That's hosed, but :capitalism:

Famethrowa fucked around with this message at 20:51 on Nov 22, 2020

# ? Nov 22, 2020 20:46

Pick: Jul 19, 2009; Nap Ghost

However, women shouldn't have to justify any reason they individually choose to have an abortion, any more than anyone needs to justify why anyone else can't have their organs. A person, male or female, has ownership of their own body. "I don't want someone to have my organs, even if they want them," is the same position as "My body should not be commandeered for the production of a child for any reason, even if my objection is as simple as 'I do not want that.'"

We can arrange circumstances such that more women's whose objections are, say, economic, are addressed. Or we can adjust our view of what an "accomplished child" looks like. But you can't tell a person "your reasons are bad so you have to do it" any more than you can criticize a person holding on to two kidneys for being selfish and therefore introduce legislation that cedes a person's rights to maintaining a two-kidney orientation.

# ? Nov 22, 2020 21:10

Ytlaya: Nov 13, 2005

^^^ Exactly - I feel like there's an unavoidable conflict where there's no way to avoid the "self-selecting eugenics" thing without infringing upon the right for a woman to choose to have an abortion for any reason (or to know about the condition of her own body, which the fetus counts as).

Famethrowa posted:

I think ideally, we would live in a society where we will provide the material support for any mother who gives birth to a developmentally delayed child, and provide compensation for the emotional and physical labor of being a mother to all women who chose to have kids.

There isn't really a way to fully "compensate for emotional labor," though. There are circumstances that you can't really expect a potential parent to willingly subject themselves to (like having a child that is likely to experience immense suffering and/or die at a young age).

There are also two sides of the coin with respect to things like "if my mother made this choice, I wouldn't exist." I'm basically the opposite of your situation - my mother got pregnant once before me and the fetus was revealed to have a spinal defect that would have likely resulted in either death as an infant/fetus or a lot of suffering. Since my parents only ever planned on having one child, that abortion essentially resulted in me (I also had a spine issue, but a much more minor one - my mom had me at a pretty late age, so that might have something to do with things). I don't think that is really the most important part of the moral calculus there (I think the most important part is just the way my mother felt about it at the time), but it's worth taking into account the fact that many (probably most) parents will be wanting to have the same number of kids regardless, so having one child will often correspond to not having another child in the future.

All that being said, I do think there's an area where the situation becomes a lot more difficult (even using the reasoning above). I definitely think (and I imagine most people in this thread agree) that it's very problematic to abort based upon things like sex or characteristics that don't actually have any health ramifications. This means that a line needs to be drawn somewhere about when it's okay to make such a decision, and I'm not sure where to draw that line. If a fetus has some sort of condition that might cause some problems but not be completely debilitating, the reasoning for "conditional abortion" become weaker. At the same time, though, it feels wrong to deliberately restrict information about the fetus a woman is carrying from her (or to not allow her to have an abortion if the reason isn't "correct" enough). The logic of "it's the woman's body" also applies to the health/condition of the fetus, after all.

Ytlaya fucked around with this message at 21:34 on Nov 22, 2020

# ? Nov 22, 2020 21:32

Nidhg00670000: Mar 26, 2010; We're in the pipe, five by five.; Grimey Drawer

If we want free and unrestricted abortions, it requires us not to question the motives of the persons having them. As science allows us more and more access to prenatal information, abortions based on this will increase, I believe. Imagine a person having an abortion based on having information that their future child will be predisposed to develop a certain malignant type of cancer, or having a genetic marker that probably will make them homosexual. Would that be ok? Morally I don't think so, but starting to selectively restrict abortions based on whatever moral course society is on at the time will not lead to anything good.

This

quote:

She loves her child, because how can a mother not? �But you love a person that hits you, bites you? If you have a husband that bites you, you can say goodbye � but if you have a child that hits you, you can�t do anything. You can�t just say, �I don�t want to be in a relationship.� Because it�s your child.�

hits me in the feels.

# ? Nov 22, 2020 21:37

LizzieBorden: Dec 6, 2009; She's hackin' and wackin' and smackin'
She's hackin' and wackin' and smackin'
She's hackin' and wackin' and smackin'
She just hacks, wacks, chopping that meat

Our early genetic screening came back with a high chance of T21 so we had further tests which showed we had another problem instead. Baby is now 3 and perfectly healthy. Had she had T21 we wouldn't have continued with the pregnancy.

I had hyperemesis gravidarum, so I couldn't face the idea of another pregnancy, so she was always going to be an only child. We don't have a lot of family and no reason to believe she would suddenly have a lot of cousins who would take her in and look after her when we died. I was in my mid 30s when she was born and her dad was in his mid 40s, if she lived until she was in her 60s, then I'd be in my 90s and probably unable to look after her.

# ? Nov 22, 2020 21:46

Pick: Jul 19, 2009; Nap Ghost

Ytlaya posted:

There are also two sides of the coin with respect to things like "if my mother made this choice, I wouldn't exist." I'm basically the opposite of your situation - my mother got pregnant once before me and the fetus was revealed to have a spinal defect that would have likely resulted in either death as an infant/fetus or a lot of suffering. Since my parents only ever planned on having one child, that abortion essentially resulted in me (I also had a spine issue, but a much more minor one - my mom had me at a pretty late age, so that might have something to do with things). I don't think that is really the most important part of the moral calculus there (I think the most important part is just the way my mother felt about it at the time), but it's worth taking into account the fact that many (probably most) parents will be wanting to have the same number of kids regardless, so having one child will often correspond to not having another child in the future.

That's an interesting and important point, so thanks for mentioning that also. In this age where family planning is widely practiced, most families do decide "how many", so it's not unreasonable to view it as a substitution, which matters in the context of the quality-of-life rebuttal that life is "better than no life". Quite often, there will probably be a life either way.

# ? Nov 23, 2020 00:44

Cobalt-60: Oct 11, 2016; by Azathoth

Another factor, both mental and logistical, is divorce. Parents of children with Down syndrome (and other "special needs" children) are more likely to wind up divorced, which puts additional pressure on the custodial parent (generally the mother).

How do we define a "free" choice?
"You're free to have this child, but it will destroy your career"
"You're free to go ahead, but it will tear your marriage apart"
"You're free to have this child, but good luck navigating the bureaucracy"

# ? Nov 24, 2020 01:04

Motherfucker: Jul 16, 2011; I certainly dont have deep-seated issues involving birthdays.

no such thing as unconditional love and quite frankly the world needs to acknowledge and accept that.

# ? Nov 28, 2020 13:50

teacup: Dec 20, 2006; = M I L K E R S =

Heavy reading.

I think that both sides get shamed more than they have to here. A woman choosing to keep a Down syndrome baby (or other disability) is not a monster who is costing the state money or what have you. (Admittedly this view would be rare on these forums I�d imagine )

A woman choosing to terminate based on Down syndrome or any mental or physical ability is absolutely entitled to do so, and not just because it�s her body or because we can�t restrict abortion for other reasons, but because it is her life and that is what matters more. This is sadly a take I�ve seen on these forums or similar with many debates about this and other conditions in the past.

Asking parents to take on the mental physical emotional and yes, financial toll of some of this stuff is really ridiculous, for what? Offending the sensibilities of people who have overcome their own battles? That�s amazing for them but it sure as poo poo isn�t everyone�s story.

# ? Nov 28, 2020 14:26

Puppy Doll: Dec 20, 2011; Hey everybody!

Part of what makes this subject difficult me (someone in the US) is the fact that states like Tennessee have "prohibited abortions if the doctor knew the patient was seeking an abortion because of [...] a diagnosis or screening that indicated Down syndrome", to quote CNN. While the ban is suppoed to be anti-discrimination with language that also bans abortions based on fetal sex or race, the punishment of up to 15 years in prison just goes to show it's a Trojan Horse to criminalize abortion.

# ? Jan 14, 2021 02:20

Verviticus: Mar 13, 2006; I'm just a total piece of shit and I'm not sure why I keep posting on this site. Christ, I have spent years with idiots giving me bad advice about online dating and haven't noticed that the thread I'm in selects for people that can't talk to people worth a damn.

teacup posted:

Heavy reading.

I think that both sides get shamed more than they have to here. A woman choosing to keep a Down syndrome baby (or other disability) is not a monster who is costing the state money or what have you. (Admittedly this view would be rare on these forums I�d imagine )

A woman choosing to terminate based on Down syndrome or any mental or physical ability is absolutely entitled to do so, and not just because it�s her body or because we can�t restrict abortion for other reasons, but because it is her life and that is what matters more. This is sadly a take I�ve seen on these forums or similar with many debates about this and other conditions in the past.

Asking parents to take on the mental physical emotional and yes, financial toll of some of this stuff is really ridiculous, for what? Offending the sensibilities of people who have overcome their own battles? That�s amazing for them but it sure as poo poo isn�t everyone�s story.

i agree with this and i feel like this issue is interesting to think about but if you have an enlightened society where "a woman has unilateral control over her body" as a fundamental principle, all of the debate in the world cant really create a situation that bypasses it. are there any issues or circumstances where you could morally argue that the state should legislate that a woman shouldnt have the choice to give birth?

# ? Jan 14, 2021 02:53

Raenir Salazar: Nov 5, 2010; College Slice

A lot of the discussion I've noticed in the thread is currently based on the ethics around the possible practice of screening to inform the mother of a possible disability allowing them to selectively abort that fetus that they would have possibly have carried to term otherwise?

Do the ethical considerations change when we consider the very highly likely widespread proliferation of genetic engineering? Technology/techniques like CRISPR and its future derivations might allow for any detected disabilities in the womb to be easily corrected.

Does the ethical question being discussed in the thread disappear with future-CRISPR or does it just merely shift laterally?

# ? Jan 14, 2021 06:18

teacup: Dec 20, 2006; = M I L K E R S =

Raenir Salazar posted:

A lot of the discussion I've noticed in the thread is currently based on the ethics around the possible practice of screening to inform the mother of a possible disability allowing them to selectively abort that fetus that they would have possibly have carried to term otherwise?

Do the ethical considerations change when we consider the very highly likely widespread proliferation of genetic engineering? Technology/techniques like CRISPR and its future derivations might allow for any detected disabilities in the womb to be easily corrected.

Does the ethical question being discussed in the thread disappear with future-CRISPR or does it just merely shift laterally?

I suppose the ethics become do you wipe out conditions for ever.

99.9% of people would fix something like Down syndrome. Or some heart defect. Other conditions get a lot more controversial. It�s split in deaf communities because with so few people being incurably deaf sign language is dropping off and people aren�t forming the vibrant deaf communities of the past. This has led to some deaf couples intentionally not letting their deaf at birth children get hearing aids. They end up forever growing with an impediment because even if you leave home at 18 and get help it�s too late for your speech etc

It�s even more of a thorn bush with neurological issues. We are very far away from diagnosing them in the womb let alone fixing however.

# ? Jan 14, 2021 06:50

The Oldest Man: Jul 28, 2003

teacup posted:

They end up forever growing with an impediment because even if you leave home at 18 and get help it’s too late for your speech etc

This has always bothered me about deaf culture, but there is a deaf culture; it's something that can be taught and passed on and celebrated even it's based on the lack of an ability that most people have and deaf people live their lives as any other people do just without the ability to hear. What's the moral calculus on bringing someone into existence you know in advance will have an incurable, debilitating developmental disability that substantially lowers their quality of life forever?

That's not a smartass question, it's genuinely troubling to me and I don't have an answer.

# ? Jan 14, 2021 07:01

Verviticus: Mar 13, 2006; I'm just a total piece of shit and I'm not sure why I keep posting on this site. Christ, I have spent years with idiots giving me bad advice about online dating and haven't noticed that the thread I'm in selects for people that can't talk to people worth a damn.

i think im of the mindset that there is a moral imperative for the state/society/the healthcare system to provide the resources (if they exist) to make those decisions. if CRISPR is capable of modifying the genes of a fetus to fix deafness or blindness or down syndrome and its not outlawed then i think it should be provided to all mothers that want it, unconditionally

The Oldest Man posted:

This has always bothered me about deaf culture, but there is a deaf culture; it's something that can be taught and passed on and celebrated even it's based on the lack of an ability that most people have and deaf people live their lives as any other people do just without the ability to hear. What's the moral calculus on bringing someone into existence you know in advance will have an incurable, debilitating developmental disability that substantially lowers their quality of life forever?

That's not a smartass question, it's genuinely troubling to me and I don't have an answer.

i dont know about the moral calculus but i believe i'd be somewhat mad if my parents continued with my existence if they were aware of a major debilitating birth defect and i think i'd be extremely mad if they hosed with my development as a child in that regard. that said, that isnt my life so i can only guess

Verviticus fucked around with this message at 07:04 on Jan 14, 2021

# ? Jan 14, 2021 07:01

Cobalt-60: Oct 11, 2016; by Azathoth

And there's the effect of class.

Even if you have public services and support available, lower-class people are less likely to know about them or be able to access them. And genetic screening (and/or alteration) is going to be out of most people's reach. If you wind up with some kind of Gattaca-style comprehensive genetic embryo screening, who can afford it, and what sort of stigma attaches to the "naturally" born before/if testing becomes widely available? Considering how our society stigmatizes the poor and stigmatizes the "defective," what happens when those two combine?

# ? Jan 14, 2021 07:09

Aramis: Sep 22, 2009

The Oldest Man posted:

This has always bothered me about deaf culture, but there is a deaf culture; it's something that can be taught and passed on and celebrated even it's based on the lack of an ability that most people have and deaf people live their lives as any other people do just without the ability to hear. What's the moral calculus on bringing someone into existence you know in advance will have an incurable, debilitating developmental disability that substantially lowers their quality of life forever?

That's not a smartass question, it's genuinely troubling to me and I don't have an answer.

Preamble: I am assuming that your question only relates to the the person themselves, and that there is no balancing against the quality of life of the parents and social impacts.

This question boils down to how you would go about defining where the threshold of quality of life is for a life worth living. This is a obviously very tricky question, and one that I'm finding frustrating to research because of the litany of self-help woo-woo drowning my search results :argh:

.

I'm inclined to be of the opinion that for an outside observer, the bar is surprisingly low, if only because of the consensus that lives of people living in very inhospitable parts of underdeveloped countries are not considered wasted.

Verviticus posted:

i dont know about the moral calculus but i believe i'd be somewhat mad if my parents continued with my existence if they were aware of a major debilitating birth defect and i think i'd be extremely mad if they hosed with my development as a child in that regard. that said, that isnt my life so i can only guess

The bolded part is crucial. Once the minimal threshold is passed, it's the business of the person itself to determine whether their life is worth living, which is unfortunately not helpful at all here since we are talking about prenatal decisions.

# ? Jan 14, 2021 08:46

Captain Oblivious: Oct 12, 2007; I'm not like other posters

Aramis posted:

Preamble: I am assuming that your question only relates to the the person themselves, and that there is no balancing against the quality of life of the parents and social impacts.

This question boils down to how you would go about defining where the threshold of quality of life is for a life worth living. This is a obviously very tricky question, and one that I'm finding frustrating to research because of the litany of self-help woo-woo drowning my search results .

I'm inclined to be of the opinion that for an outside observer, the bar is surprisingly low, if only because of the consensus that lives of people living in very inhospitable parts of underdeveloped countries are not considered wasted.

The bolded part is crucial. Once the minimal threshold is passed, it's the business of the person itself to determine whether their life is worth living, which is unfortunately not helpful at all here since we are talking about prenatal decisions.

Is not the fact that they feel the need to sabotage the child�s ability to make a choice later down the line (by deliberately not providing hearing aids to those who are not incurably deaf) not an implicit acknowledgment of the probable choice of the individual impacted though?

It�s essentially a statement that �I know they will not make the choice I would like so I am going to hinder their ability to make the choice I don�t like� in practice.

Captain Oblivious fucked around with this message at 09:19 on Jan 14, 2021

# ? Jan 14, 2021 09:17

The Oldest Man: Jul 28, 2003

Aramis posted:

This question boils down to how you would go about defining where the threshold of quality of life is for a life worth living. This is a obviously very tricky question, and one that I'm finding frustrating to research because of the litany of self-help woo-woo drowning my search results .

I'm inclined to be of the opinion that for an outside observer, the bar is surprisingly low, if only because of the consensus that lives of people living in very inhospitable parts of underdeveloped countries are not considered wasted.

I'm not making a value judgment on the kid or their life, I'm making a moral judgment on the parents. How much pain is it OK to knowingly inflict on someone by bringing them into existence with some debilitating and incurable condition baked in? It feel like it's easy to say the bar is low in this case because Down's is viewed a no-fault condition and all life has innate worth, but what about Fetal Alcohol Syndrome? Is there a point at which the parents simply proceeding with the pregnancy, and what that will mean for the person that will be born, constitutes harm done to that person?

Verviticus posted:

i dont know about the moral calculus but i believe i'd be somewhat mad if my parents continued with my existence if they were aware of a major debilitating birth defect and i think i'd be extremely mad if they hosed with my development as a child in that regard. that said, that isnt my life so i can only guess

I'm in this boat. I don't know if I could ever forgive my parents for knowingly allowing me to be born with a severe developmental disorder, assuming I had the mental capacity to even understand what had been done to me by their decision.

# ? Jan 14, 2021 09:34

Raenir Salazar: Nov 5, 2010; College Slice

This also sorta reminds me of the debate around circumcision.

# ? Jan 14, 2021 09:38

i say swears online: Mar 4, 2005

Aramis posted:

The bolded part is crucial. Once the minimal threshold is passed, it's the business of the person itself to determine whether their life is worth living, which is unfortunately not helpful at all here since we are talking about prenatal decisions.

i think it can be applicable (though maybe less profound) in many childhood situations. why did you make me grow up in an FLDS commune, etc. many of those decisions are de facto prenatal

# ? Jan 14, 2021 10:16

teacup: Dec 20, 2006; = M I L K E R S =

The Oldest Man posted:

This has always bothered me about deaf culture, but there is a deaf culture; it's something that can be taught and passed on and celebrated even it's based on the lack of an ability that most people have and deaf people live their lives as any other people do just without the ability to hear. What's the moral calculus on bringing someone into existence you know in advance will have an incurable, debilitating developmental disability that substantially lowers their quality of life forever?

That's not a smartass question, it's genuinely troubling to me and I don't have an answer.

Yeah it�s tricky. And really the deaf one is a real world example that is likely �simpler� than most.

Like do we support aborting based on gender? Do we support it based on size? Let�s pretend we can pretty much tell any condition or malady that could ever pop up. Would we abort based on Down syndrome? Cleft palate? Heart defect? Severe brain abnormalities? Non severe? Anti social? Neurodivergent/on the spectrum?

These will have different answers for different people. And some people would be aghast at allowing your child to say, be deaf, or not be able to walk ever know you could have either cured the deafness or found out about their disability at 8 weeks and terminated. But then they may be OK with allowing (again hypothetical, we can�t tell this in the womb) their baby have a cleft palate because they knew someone and they got along fine with it.

It�s complicated and I also don�t know the answer. I just know that when my wife was pregnant and still to this day I would do anything to ensure she leads as normal a life as possible.

# ? Jan 14, 2021 11:01

Mycroft Holmes: Mar 26, 2010; by Azathoth

As someone with mental and physical disabilities, as someone who has cost his parents significant time and money beyond that of a normal upbringing, as someone who had themselves voluntarily sterilized to avoid passing on defective genes, these sorts of debates strike close to home.

# ? Jan 14, 2021 13:15

Cobalt-60: Oct 11, 2016; by Azathoth

Parents want their children to be like them. This bias is inherent to humanity.

At least there isn't a gay gene, or people would be trying to eliminate that.

# ? Jan 14, 2021 16:21

The Oldest Man: Jul 28, 2003

Mycroft Holmes posted:

As someone with mental and physical disabilities, as someone who has cost his parents significant time and money beyond that of a normal upbringing, as someone who had themselves voluntarily sterilized to avoid passing on defective genes, these sorts of debates strike close to home.

I think everyone who posts here would be extremely interested in your perspective.

# ? Jan 14, 2021 20:49

Mycroft Holmes: Mar 26, 2010; by Azathoth

The Oldest Man posted:

I think everyone who posts here would be extremely interested in your perspective.

Well, I support the mothers right to choose. I personally believe my parents would have been happier with a child without disabilities, despite their protestations to the contrary. I had a vasectomy so there's no chance I could have a child, partly because any child would have health problems.

# ? Jan 15, 2021 09:01

A Buttery Pastry: Sep 4, 2011; Delicious and Informative!

To add to the initial article, I want to expand a bit on the show colloquially known as "Morten og Peter". It wasn't just like, a regular show hosted by two people with Downs' Syndrome, but a series of documentaries of their daily lives stretching from their early teens (1991) to late thirties (2013), and it's been extremely popular. The average viewership, stretched out over a handful of reruns, is about the equivalent to half a Super Bowl and pretty consistent across time. I wonder if perhaps it has had an impact on this:

Children with Downs' born after having tested positive (percentage)

The show has done a lot to demystify Downs', showing the two* as essentially "normal", with their relative lack of filter putting extremely relatable emotions front and center. I imagine the effect of the show has probably been as close to a normalization of having Downs' Syndrome as you can find anywhere in the world, and in a relative sense it does seem to have shifted opinions quite a lot, but the vast majority still go for the abortion.

*Technically there were three, but the girl/woman seems to have been sidelined (or chosen to leave).

Verviticus posted:

i dont know about the moral calculus but i believe i'd be somewhat mad if my parents continued with my existence if they were aware of a major debilitating birth defect and i think i'd be extremely mad if they hosed with my development as a child in that regard. that said, that isnt my life so i can only guess

teacup posted:

Yeah it’s tricky. And really the deaf one is a real world example that is likely “simpler” than most.

The closest analogue I can think of to deaf parents trying to perpetuate deaf culture by maintaining their child's disability would be parents deliberately causing severe malnutrition in their child for whatever reason you might do that. So yeah, it does seem like a far "simpler" moral question than the question of screening for various disorders/"disorders".

# ? Jan 16, 2021 09:23

teacup: Dec 20, 2006; = M I L K E R S =

Your disorder is someone else�s �disorder� though. Including deaf people. Where do you draw the line?

# ? Jan 16, 2021 12:38

A Buttery Pastry: Sep 4, 2011; Delicious and Informative!

teacup posted:

Your disorder is someone else�s �disorder� though. Including deaf people. Where do you draw the line?

That is the question, and there's arguably multiple axes along which to judge this stuff. Even on the question of bodily autonomy alone there's bodily autonomy for the pregnant person, but also the child, and a sort of zone of future/imagined/potential bodily autonomy before the child can even be said to be a child. It's not really just about the act of creating a new person and the moral quandaries associated with that, but also the rights of that (potential) new person vs. the rights of the (potential) parents. The latter of which even ties into the more general question of the rights of people not yet born and their rights putting constraints on our ability to act.

# ? Jan 16, 2021 13:27

Lady Militant: Apr 8, 2020; The history of all hitherto existing society is the history of class struggles.

I basically never post in D&D but as someone whose struggled immensely in school due to learning disabilities if genetic engineering could eliminate those disabilities id be completely in favor of it. Lots of people like to make hay about how morally unjust it might be metaphysically, but at the end of the day the shear amount of suffering you need to go through to make it in society as a disabled person makes me feel like that's missing the forest for the trees. It's fundamentally not the same as the "well if we could engineer peoples genomes to prevent ADHD why not do it to prevent homosexuality?" either because the latter may impact your ability to integrate socially into society (depending on the society), but ADHD will always negatively affect your ability to do everything.

And no. It shouldn't be the parents choice. Abortion is fine. Making someone live 90 years of poo poo because you were too high and mighty to take the fix for your kid is loving abhorrent. Hell even when they are born theres tons of parents that patently refuse to acknowledge their child has a disability!! It sucks rear end!!

# ? Jan 16, 2021 17:45

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# ? May 6, 2024 11:59

Lien: Oct 17, 2006; <img src="https://forumimages.somethingawful.com/images/newbie.gif" border=0>

Ok, as a person with a couple of developmental disabilities (not Down's syndrome), I think some of these takes suck and seem pretty eugenicist. Society is ableist, and is structured so it's not accessible to a lot of people. That doesn't mean you remove the people that society is inaccessible for, it means you make a less lovely society. I don't want to be "fixed" on the developmental disability front because I've gotten myself into a niche where I can succeed-- and I recognize that not everyone is as lucky or as privileged as I am, but again, that speaks to improving society, not getting rid of people who are different.

I think a lot of the concern about having disabled children comes from the lack of social support available to parents, and if you want to have a debate about the circumstances of disabled people, then the entrenched ableism in our society is the first place to start. I have a buddy with similar issues to me. He's on social support. His life, as a result, is very very different than mine, but that's because our "social support" is actually entrenched poverty due to ableism. If disabled people can't work, our lives are seen as less, which is quite frankly, the major problem in my opinion. There's also a marked unwillingness on the part of various governments to support families who can't draw on extended relatives or hired help, even when doing so would be of greater social benefit to society. Edit: to the point about most of the child care and support for disabled children coming from women, this is accurate and a very valid concern, and speaks to the need for increased support to women and families.

Also, as a disabled person, I will have a genetic child, assuming my body cooperates on that front. It may not, and I may adopt instead. But fundamentally, my life as a disabled person has been good, and honestly a lot better than abled people in lower socioeconomic statuses. I don't see the decision to have disabled children as being a moral decision, really, because even with all the information available, it's never 100% and there are always degrees of disability. And people acquire disabilities on a very very regular basis, with approximately 22% of people ending up experiencing disability in their life. The idea that there's a 1/4 chance of a child/person experiencing disability over a lifetime, and this is a moral decision is kinda...weird imo.

Lien fucked around with this message at 20:06 on Jan 16, 2021

# ? Jan 16, 2021 19:15

The Something Awful Forums > Discussion > Debate & Discussion > "The Last Children of Downs' Syndrome" - Discussion

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