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    PloughCast #22 Velvet Eugenics and Parenting Kids with Down Syndrome

    Made Perfect, Part 4

    By Peter Mommsen, Susannah Black, Rosemarie Garland-Thomson and J. D. Flynn

    January 25, 2022
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    Peter and Susannah talk to Rosemarie Garland-Thomson about bioethics and with J. D. Flynn about genetic testing and parenting kids with Down syndrome.

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    About This Episode

    Peter and Susannah speak with Emory bioethicist Rosemarie Garland-Thomson about her ongoing philosophical journey into bioethical questions, and her critique of market-and-autonomy based ideas about human worth. Might an ethic of caution, care, and doing no harm provide a path forward for disagreement about personhood in the case of abortion?

    They also discuss Denmark’s famed “eradication” of Down syndrome, and its cost: the eradication of people with Down syndrome.

    Then, they speak with J. D. Flynn about a recent Times piece exposing the extreme unreliability of prenatal genetic testing, and the assumptions that the piece makes (by implication) about the value of human selves.

    Flynn also describes his and his wife’s own experiences as parents of two adopted children with Down syndrome and one biological child without it: how can we receive all children, adopted and not, of all “kinds,” as gifts?

    • I: Rosemarie Garland-Thomson: The Road to Bioethics
    • II: Rosemarie Garland-Thomson: Abortion, Eugenics, and Doing No Harm
    • III: J. D. Flynn: The Market for Genetic Testing
    • IV: J. D. Flynn: Parenting Children With Down Syndrome

    Recommended Reading

    Transcript

    I: Rosemarie Garland-Thomson: The Road to Bioethics

    Peter Mommsen: Welcome back to The PloughCast. This is episode four of the series covering the latest issue of the magazine, “Made Perfect.”

    Susannah Black: Today, we’ll be speaking with bioethicist and Emory professor Rosemarie Garland-Thomson, and with J. D. Flynn about being the father of children with Down syndrome. I’m Susannah Black, senior editor at Plough Quarterly.

    Peter Mommsen: And I’m Peter Mommsen, Editor-in-Chief of Plough. This is the episode where we talk about physical difference, parenthood, and how receiving children as gifts changes the way we live in the world. First off, we’re honored to have on the podcast Rosemarie Garland-Thompson. Rosemarie is a disability justice activist and scholar and writer. She’s a professor of English and bioethics at Emory University. Rosemarie’s co-editor of About Us: Essays from the Disability Series of the New York Times, and the author of Staring: How We Look, and several other books. Her current project is Embracing Our Humanity, a bioethics of disability and health. Welcome, Rosemarie. Could you describe your background and how you came to do the work that you’re doing?

    Rosemarie Garland-Thomson: Thank you very much for having me. I’m looking forward to this conversation. I am an English professor. I’ve been working to, as we say, develop disability studies in higher education, particularly in the humanities, and I’d like to come back to that a little bit, for the last twenty years. And the reason I started doing this is that around twenty years ago in English departments and in critical theory, there were lots of important questions being raised about women and women’s culture and the inclusion of women in the knowledge base, as well as the inclusion of people of Color, Black people, Brown people in the knowledge base of what counts as knowledge.

    And I began to understand then that people with disabilities or disability as a concept and a community also had not been explored in this way and was omitted from what counts as knowledge. And so I was able to make those connections between what we called then feminist theory, and women and gender studies, and critical race studies, to work on developing disability studies and work on connecting disability – culture and disability justice, if you will – to education and to knowledge-making and to teaching.

    Susannah Black: Why was it that you were interested in disability studies?

    Rosemarie Garland-Thomson: I was born in what we now call a pre-disability rights and pre-ADA, Americans with Disabilities Act era. And I was born with a pretty significant congenital disability. I have what I call very unusual arms and hands, and like many people with disabilities, especially early on in life – There was no one in my family with a disability; I didn’t know anyone with a disability.

    So although I recognized myself as something different from other people, I had no idea about, I had no disability consciousness. I had no political consciousness actually at all in any way until I was well into graduate school and began to understand the possible parallels between something like the Black civil rights movement, the disability rights movement, the broader human and civil rights movement.

    Peter Mommsen: So part of the work you’ve been doing is focused on the phenomenon of so-called “curing” diseases, either by genetically erasing human beings who have certain genetic characteristics in the case of CRISPR or by actively killing human fetuses, say with Down syndrome, could you talk a little bit about that work in regard to those who are judged to be genetically inferior, and are there links between these two issues? What are the distinctions too?

    Rosemarie Garland-Thomson: I think we have to back up a little bit, if you will, and to think about the large changes that we consider to be modernization or modernity, the things that make it different for us living now from, say, people who lived, that we know at least through historians, four hundred, five hundred, or six hundred years ago.

    One significant difference is that what we think of as medicine or science is now the template that most people in what we think of as the rich or the developed world now use in understanding themselves. So this is a significant shift from other more traditional ways of understanding people or templates of understanding that might have to do with divine authority.

    Scientific authority would suggest that there are ways of being in the world that we call diseases and that these diseases are that which should be extirpated from the human experience. And it does make a lot of sense to think about it that way. This is what we sometimes call the medical model, that is to say a medical understanding of human existence. And that has some great benefits, but it also has some limitations. So the idea of disease itself and scientific-medical conceptualization of human existence, is what we want to ask questions about.

    So one important question is: what human variations count as disease, and why does that matter? And when we think about the ethics of different biomedical practices and the development of different kinds of biomedical technologies, like gene editing, like selective testing, like euthanasia, like selective termination, these really complex ethical questions that relate to practices that have to do with life and death. What we want to be able to think about is not just which diseases should be eliminated from the human experience and condition, but what kinds of human variations count as disease and why does that matter?

    Susannah Black: Some of the work that you were doing served to contribute to this big Atlantic piece that I think a lot of our listeners might know about, which is called The Last Children of Down Syndrome. It’s about the phenomenon of, is it Iceland?

    Rosemarie Garland-Thomson: Denmark is the country that the article focuses on. But there are several of the Nordic countries who are in a similar situation.

    Susannah Black: And the way that they put it is that they have eliminated Down syndrome from their countries. This is thought of as this great achievement of medical science. What they mean of course, is that they’ve eliminated people with Down syndrome; they haven’t cured Down syndrome, they’ve killed in utero the people who would be otherwise the people with Down syndrome in that society. And the way that it’s put is often in terms of the choices that parents or potential parents might make about the kinds of children that they want.

    You had a phrase that I loved, “velvet eugenics,” which I think really challenges the idea that autonomy and consent and market style decision making are a morally neutral version of eugenics, while [Nazi doctor Josef] Mengele, or Buck v. Bell in the United States, the decision that permitted so-called feeble-minded women to be sterilized involuntarily, you challenged the whole concept that voluntary euthanasia is better or market-based euthanasia is better. Can you talk a little bit about that?

    Rosemarie Garland-Thomson: Of course it’s important to make a clarification about the reference. It’s a reference to what we sometimes call the Velvet Revolution, which occurred in 1989 and in the early 1990s in Central Europe and in Europe in general, and in many places around the world, in which a political and social revolution took place without the explicit military violence that we usually associate with revolutions.

    In other words, people did not die for a political regime to change. And I think this is a good comparison because it is imagined that the elimination of, say, people with Down syndrome, and it’s the very best example, is some sort of progress toward making happier and healthier families and communities, and Down syndrome as a way of being in the world is in my view the best case study or iconic example of what we ought not to be doing in relation to biomedical ethics.

    Down syndrome was the first genetic condition to be tested for at least in the United States, but I think worldwide in the mid-1960s, because it could be tested for so easily. And there was a certain logic of testing for Down syndrome at that time prenatally because people with Down syndrome born into the world then didn’t have very high quality of life very often. That was in part because of the recommendations and the treatments available for the medical conditions that often accompany Down syndrome.

    It was very common that the recommendation then for a family who had a child with Down syndrome was to institutionalize them. And of course we know that people don’t do well at all in institutional settings. There were also fewer treatments for the kinds of medical conditions that often accompany Down syndrome and that people with Down syndrome live with over a lifetime. But that has changed dramatically since the 1960s. And yet what has not changed is the urgency of testing for Down syndrome.

    As I said, [it’s an] iconic condition that we think creates a burden on families and low quality of life. What I say is that there’s a great irony right now, and that is that someone born with Down syndrome in a place like the United States now, in a rich country, if they are born into a relatively middle class family, they have the highest quality of life that anyone with Down syndrome has ever had in all of human history. And yet this is a kind of person that is being eliminated from the human population at a rate of 90 percent or over.

    So how to explain this is complicated and important. And I certainly don’t have a full explanation of it. Part of it is that once a technology or a practice is in place, we know that it’s very hard to change that set of practices. It’s like turning a ship around when it’s headed toward an iceberg. It’s not an easy thing to do. So that’s part of the dilemma, if you will, or part of the way that the practice continues.

    But it also continues because we have a very well-established narrative that disability, especially disability that involves appearance or disability that involves anything that we think might be a kind of reduction of cognitive capability or any kind of a disability that we think might lead to a lower quality of life or a need for a great deal of healthcare resource investment. These are the human conditions that most underlie our logic of eliminating people who fall into those categories.

    In other words, instead of addressing the socioeconomic and political problems, we are still going directly to eliminating the people that are most subject to these political and social problems.

    II: Rosemarie Garland-Thomson: Abortion, Eugenics, and Doing No Harm

    Susannah Black: I mean, there’s a distinction it seems to me – Not necessarily a distinction such that you’d be like, "Well, this is the version that’s the problem and this is not a problem," but there is a distinction between eliminating people who are fetuses, who are already in the womb, with Down syndrome, on the one hand, and then gene-editing such that the fetuses who are implanted and then born are the kind of people that you want them to be. These both seem to me to be quite creepy, but in slightly different ways.

    Rosemarie Garland-Thomson: Well, yes, I think we have a real moral and philosophical dilemma that we really are talking about. And that is, Where does a distinctive human life begin? We have made the pragmatic choice – and it makes a lot of sense why we’ve made this choice – to put birth as the threshold for full legal and moral humanity. And that’s been a pragmatic choice that has been necessary in order for us to move forward in assuring that women have reproductive liberty.

    On the other hand, we know both scientifically and morally that if what matters about what it means to be human is our individual distinctiveness, we do know that the distinctive individual is established upon conception with an embryo. And there certainly is an enormous difference between an embryo and its genetic distinctiveness and a full term newborn in its genetic distinctiveness. But it is in fact a continuum.

    And if we eliminate, intentionally, an embryo or a fetus on the basis that we object to its distinctive humanness, its distinctive human profile, if you will, then we are in some ways acting against one of the most significant moral principles of modernity. And that is the recognition of the individual value of each distinctive human being as being equal under the law, under the eyes of God, depending on what sort of authority that you want to claim, that the value and worth and equality of human individual distinctiveness is an important moral and political value.

    So it becomes a really difficult dilemma where we have to think about balancing harms and benefits in order to establish policy and practice. And I think that’s why we have such strongly felt conflicts about what kinds of policies and practices we’re actually going to carry out.

    Peter Mommsen: It seems to me that our culture is trying to hold two things as true at the same time. There is the 2007 UN convention on the rights of the disabled; in US law, there’re protections for peoples with disabilities enshrined, in the UK as well in the Equalities Act. The principle of full dignity for those with disabilities is affirmed. And yet with the other side of the mouth, so to speak, there’s an assumption that a life with a disability is inherently to be avoided. How do you think about the apparent way that we say two things about disability in our culture?

    Rosemarie Garland-Thomson: Well, exactly. I think you are describing very well the kinds of inherent conflicts and contradictions and paradoxes, if you will, that are present in human existence. And I think the best thing for us to do as a human community is to recognize these conflicts and contradictions, these paradoxes. I like that word better than conflicts. Conflicts I think suggest too much like wars and fighting and battling, which is the language that I think we’ve exhausted and ought to turn away from.

    And to think about how we have to mutually respect each of the perspectives, not the sides, but the perspectives as shared perspectives and to recognize that these paradoxes exist everywhere and then to try to move forward. And this is the difficult thing with reasonable solutions, which would be laws and practices and policies that try to respect both perspectives, even though these perspectives are in contradiction to one another when carried out in practice, and to be willing to compromise and to be resourceful about other solutions.

    I’d like to see more conversation directed at over the issue of abortion or specifically selective termination. That is to say, abortion on the basis of the presence of characteristics, such as sex, but certainly also such as disability, more fruitful conversations about how both perspectives can be respected and what kinds of practices and policies can be put forward that are compromises to absolute positions, but at least address respectfully the positions of both perspectives. And I think it’s … tragic would not be overstating it, that we can’t seem to do this in any way more productive than these terrible ad hominem attacks and these defensive platitudes. It’s very unfortunate.

    Susannah Black: Many people actually have talked about the need to put a moratorium on things like human germline research until we come to some sort of cultural conclusion about these questions. Obviously, politically, we live in a world with each other and we care about each other and we’re committed to seeking out, or at least many of us are committed to seeking out, a kind of shared common good and as much as possible a shared moral language. But at the same time, it does seem to me that there are perspectives that I think that it’s proper to not respect, even if someone holds them very strongly and even if it might be the case that there is an ethical intuition at the core of their perspective, that should be honored.

    It seems to me that trying to draw out the good there is in wrong perspectives is more important than just saying, well, you have this strong belief, for example, that someone with Down syndrome does not have a life that’s worthy of life. “Well, maybe the intuition that you have is that human flourishing is good, and that you feel as though someone with Down syndrome couldn’t flourish in the way that you would want ideally your child to, or something.” I can understand that’s where someone’s coming from.

    But at the same time, I feel as though there are things that we can’t compromise on. And it seems to me that the worthwhileness of each person as a person, whatever their genetic difference, whatever their history, whatever their life experience, including experience of suffering is something that I feel like it’s okay to not compromise on, but I also think that there is a way to talk about that without, as you say, getting into the platitudes or ad hominems or assumptions of bad faith that often accompany those conversations. Does that make sense to you at all? Or am I being too rigid?

    Rosemarie Garland-Thomson: I agree with what you’re saying. In other words, every perspective is not legitimate, and every perspective cannot be morally acceptable. That said, there is much more latitude than we are recognizing now for compromise and for recognizing a variety of different perspectives. But I’m – remember, as I said, an English teacher – and what I mean by that is that I have worked primarily with narratives. And so I have a couple of things to say. One is that I decided to develop an expertise in bioethics to become a bioethicist, as I say, and I’ve done that over the last several years in part because bioethics as a enterprise is an applied enterprise where literary studies is more of a theoretical enterprise that has to do with meaning-making and representation and interpretation. So bioethics draws from religious studies and philosophy and medicine and to a lesser degree social science.

    But one of the elements of bioethics that I particularly appreciate is the concept of principlism, which puts forward four principles. One is autonomy, another is justice. And the other two are a pair that I find very compelling. One is the concept of doing good. And the other is the concept of doing no harm.

    And one of the compelling things about bioethics, and this is not exactly universally agreed upon amongst bioethicists, but one of the elements of principlism is that do no harm is more important than doing good. And that’s a conservatism that’s fundamental in bioethics.

    Therefore, in practices such as selective termination or gene editing or euthanasia, or even the cliché of fighting disease or battling cancer, it might be wisest for us to take up the premise or the principle of first do no harm, which is implicit and involved in the Hippocratic oaths.

    And this would lead us, say, to something like, Rather than eliminating people with Down syndrome in an effort to improve humanity, reduce economic burden, and make everyone happier, instead, let’s do no harm to this population of human beings.

    Susannah Black: I did not grow up pro-life at all. I am now very strongly pro-life. Most of the women in my family are still very pro-choice. And so I’ve had a lot of conversations about this, but it does seem like looking at the individual as either a person or potential person or whatever your conception of the fetus is, and saying “Maybe there is a person, I don’t know whether there’s a person there or not,” but an ethic of caution and an ethic of a duty of care to make conservative choices. Conservative in the sense of, “If I don’t know that this is a person, it might be, but if I don’t know that, I should probably be quite careful about what I do with that being, that creature, and I should probably avoid doing harm to him or her or to it.”

    Rosemarie Garland-Thomson: That’s exactly the application of what I’m talking about in this particular area.

    Rosemarie Garland-Thomson: Well, one important thing to bring up is the concept of suffering, because it is imagined that living with a disability is an occasion for suffering more than living a life without a disability. And this is a narrative, a false narrative that I think we really need to address. Human beings suffer and they suffer unequally and they suffer for a variety of different reasons. We suffer because we’re human. We suffer because we have bodies. We suffer because we depend upon one another. We suffer because we die, and the people we love and care about die.

    So suffering is built into human existence, but the myth or the error is to imagine that people with disabilities suffer more than people who are non-disabled. And that’s something I think we really have to unseat. And we can do that by coming back to my work as a narrative humanist or an English teacher. We can do that most effectively I think by bringing forward what I call narrative evidence about what it means to be human and what it means to live a human life in the scale of an actual human life. And so what that means is to bring stories forward of life, life lived with suffering, life lived without suffering, life lived well.

    These individual stories of the rich variety of human life are what we need to bring into the conversation, which is dominated by what I call counting evidence, that is to say statistics, measurement, counting the kind of evidence that doesn’t really comport with human experience. So we need stories to put up against numbers because it’s numbers and it’s measurements, and it’s statistics that give us things like quality of life evaluations, which are largely measurements of what we think of as disability against which judgements are made and resources are distributed. So that’s part of what I am calling for as well: A different kind of knowledge to balance off the preferences for statistical or counting knowledge that medical science has given us in the modern era.

    Peter Mommsen: Thank you for the conversation.

    Rosemarie Garland-Thomson: Thanks for the opportunity. And I look forward to learning from you and from Plough and from your community. Thank you.

    III: J. D. Flynn: The Market for Genetic Testing

    Susannah Black: Now, we’ll welcome J. D. Flynn. J. D. is cofounder and editor in chief of The Pillar, a Catholic news site, is the father of two children with Down syndrome, and is an advocate for the full inclusion of people with disabilities into the life of the Church. Welcome, J. D.! Thank you for being here with us. One of the things that I wanted to talk about today was something that you had tweeted about recently again, sorry to lead with Twitter.

    J. D. Flynn: No, no.

    Susannah Black: But you had talked about this New York Times piece that came out, I guess it was about a week and a half ago or something like that, which was a study that they had done showing that for certain kinds of prenatal testing, what are called microdeletions tests, approximately 85 percent of all results are wrong. So they’re either false positives or false negatives. Primarily, it looks like false positives. And so these tests, which claim absolute reliability, are only 15 percent reliable at best. But one of the things that you had mentioned, or ways that you had reacted to this, was wanting to push into the way that this piece covered that study and the implications behind this great scandal that they had uncovered about the unreliability of the tests. Do you want to talk about your thoughts about that?

    J. D. Flynn: That Times piece was interesting, and I think it is important to understand both the unreliability of the microdeletions tests. Things which are taken as a potential marker, which would require follow-up tests to verify, are taken as definitive. They’re marketed in the doctor’s office as being definitive. And so there’s both a misunderstanding of what the tests are and then false positives that come even in that context. I don’t know if I read this into the piece or not, but if I did, I read it into it born out of my experience, I suppose. There did seem to be an underlying presumption, in the way that stories were told: “This person got a false positive and they had an abortion.”

    And if they had known the child didn’t have the thing, they wouldn’t have had an abortion. The presumption of a lot of the narrative was that, of course, if a child has a serious chromosomal or genetic abnormality, abortion would be the right choice. Or of course, a parent who discovers that a child actually has some kind of very serious, perhaps fatal chromosomal abnormality would “do the compassionate thing” as I think, so many people look at it, and choose an abortion. And the problem with that presumption is how ubiquitous it is. I have two children with Down syndrome. Our children with Down syndrome are adopted, but we’ve gotten to know over the past ten years a lot of Down syndrome families.

    And of course we know the birth parents of our own children, we know their stories, and we know that those microdeletions tests are effectively add-ons to the prenatal testing that looks for Down syndrome and other more commonly found genetic abnormalities. And it’s very commonly understood in the Down syndrome community, among people who are religious and not religious, pro-life or not pro-life, that when a woman gets a prenatal diagnosis of Down syndrome, she’s going very likely to experience the reporting of that diagnosis as a negative. In the doctor’s office, she’s going to hear, “I’m sorry, your child has Down syndrome,” and then immediately be moved into genetic counseling, which suggests the reasons why she ought to consider an abortion.

    And oftentimes the presumption of an abortion is just that, a presumption from the medical community. “We can talk about scheduling termination” and these kinds of things. Anecdotally, we know that that disproportionately is true for poor women and I think there’s some data that suggests that as well. But again, it’s not just a journalistic presumption in the New York Times, but a broad, medical, cultural presumption that a person who has a prenatal diagnosis of Down syndrome is probably going to choose to have an abortion. And that might be the compassionate thing to do. It’s probably better for everyone. In this country we know that at least two-thirds of children who receive a prenatal diagnosis of Down syndrome indeed are the subjects of abortion. So that presumption really has a toehold in the way that we think about these tests from the very beginning.

    Susannah Black: One of the things that I thought was quite chilling, which was one of the things that you tweeted about – this was one of the quotes from this piece – “Natera, which is one of the companies that does these screenings, particularly for Down syndrome, has performed more than two million screens for Down syndrome since 2013. It went public in 2015 and the value of that stock has grown to $8.8 billion.” And what you had drawn from that was the idea that $8.8 billion for at least this company is the value that our economy places on avoiding parenting people like your two oldest children. It is so highly valued to avoid parenting those children that we as a political economy think it’s worth that much. And that hit me too hard.

    J. D. Flynn: It’s a little bit of an emotional reaction, the reaction of a dad, because of course the company has other kinds of testing and things like this, but it is … the avoiding-Down-syndrome-industry is a big industry and has done a very good job making ordinary the notion in the doctor’s office that the right thing to do is to choose to have an abortion if you have a child with Down syndrome. And you see the way that gets presented culturally. And of course, that’s not to indict every doctor who offers prenatal testing to pregnant moms or moms who have prenatal testing, but the way that we think about this and the size of the industry and the results of that industry. The most immediate result of the ubiquitous practice of prenatal testing is that two-thirds of children in this country who are diagnosed with Down syndrome are aborted. And so I don’t think we can bracket off that consequence from the ubiquity of that kind of testing or how profitable it’s become.

    Susannah Black: Right. There are some [cases] obviously where children are diagnosed with conditions that mean that they’re not expected to live very long past birth. But a great number of them are for things like Down syndrome or for lifestyle choice of child types, which is a creepy way to put it. But the whole framing of the piece did make it sound like these are predominantly affluent, at least the people in the Times piece seem to be predominantly affluent, people who have controlled a great deal about their lives and are now running into something that they can’t control. And they want to be able to edit the type of child or the genre of child that they’re given. That’s the vibe that I was getting from that.

    J. D. Flynn: Yeah. It’s my expectation that Down syndrome in this country is going to become increasingly the purview of either weirdly religious families, like my weirdly religious family, or of people from lower income classes, of poor people and rural people who are not conditioned in a technocratic sense of being able to master and control nature, even to the point of designing their families in the way that seems most consonant with their lifestyle. You might already see that. I think that’s probably where the existence of Down syndrome is going, because the ordinary mode of an upper middle class or middle class, well-educated, technocratic family is precisely that we can control everything. And so when you introduce something which undermines the expectations or plans for that family... Even the way that the Down syndrome community talks about, when you have a kid with Down syndrome, when you have a baby with Down syndrome, people reach out to you a lot to talk to you about how you’re doing with that and these kinds of things.

    The presumption is that this is a challenge, and indeed it is. But the conversation is often like, well, although you have to mourn that your child probably won’t be going to the same college as you, although you have to mourn your career hopes for your child, the child will still have a life that’s worth living. And you see in that a weird reflection of the values that are presumed to exist for ordinary middle class or upper middle class families, which are entirely focused on productivity, career, affluence, social status of university attendance and these kinds of things. Those weren’t the things that I hope for my kids anyway, because those things mostly seem stupid, but that you can see in the way that people try to console you about Down syndrome, the way that the institutional Down syndrome universe tries to console you about Down syndrome. You see a reflection of those technocratic ideals, I think.

    Susannah Black: I hadn’t realized how recent a lot of this kind of technology, or at least the widespread rollout of this kind of biotechnology is. The piece said that basically it’s only within the last ten years that this level of screening, where it’s a bit bespoke, you can decide that you want to screen, pay more and screen for more things – that that kind of regime has only been around for about ten years.

    J. D. Flynn: Yeah.

    Peter Mommsen: It almost seems like a preview of the kind of world we’ll live in after CRISPR style gene editing comes into being where, as you’re saying, to have a child with Down syndrome becomes a choice. Something that you either choose to do because you’re weird, Christian or conservative or otherwise, just a little different than the norm, or because you don’t have the money to pay to avoid, so to speak, substandard children from the point of view of this technocratic mindset.

    J. D. Flynn: Or you don’t have this kind of technocratic idealism that tells you that that’s important. And that’s where I say perhaps the respite for people with Down syndrome will be in communities that are lower income, rural, that in some ways perhaps carry more of a sense of what it is to be human than the way in which technocracy has challenged that for all of us.

    Susannah Black: The other thing that is just always remarkable in pieces like this is the sort of language games or the language ambiguity that’s always here. So I think this is the first paragraph and the piece talked about this woman who, after a year of fertility treatments, after they had a normal ultrasound, “she was confident enough to tell her three-year-old son, his ‘brother or sister,’ with scare quotes, was in her belly. Later on, there’s a woman who talks about seeing the ultrasound of her child, who she wrongly believes in this case, is positive for a condition that would mean that they would die shortly after birth and with no quotes around the word child, the phrase is, “She cried because she thought that this was the only time that she would see her child moving.”

    And then there’s other parts of the piece where children are talked about as “fetuses” or as essentially genetic material. So just this total inability, even within the bounds of one fairly carefully researched and put together piece to decide what we’re talking about. Are we talking about people? Are we not talking about people? Are we talking about, let’s say “brother or sister” in the way that you would say “in my belly,” meaning as a kind of imprecise way of talking about what’s real.

    J. D. Flynn: Plus you’re surprised they would impose a gender binary on the kid. Right. Geez.

    Susannah Black: Exactly. Right. Yeah. Do you want to talk about just your life path here and your wife’s life path to adopting your two oldest children?

    J. D. Flynn: Just before I do that, one of the things that we’ve talked about is that the New York Times piece talked about people who would maybe have terminal genetic conditions, conditions in which they might not live for very long after birth at all. And then other people who have the genetic conditions that define their lives in very many ways, but are not as such terminal. And I don’t know if you know anybody who has had the experience of losing a child shortly after birth. Maybe the child had a genetic disability, like Trisomy 13 or something like that, or maybe they didn’t. It’s one of those moments of just profound and raw and real and human pain for families.

    It’s interesting because obviously infant mortality used to be much higher. That used to be a much more common, I think, though no less profound and difficult, experience, but the ubiquitous desire to avoid that kind of experience, the absolute certitude that sanitizing that experience is the right path for everyone, is ultimately a desire to avoid the pain of going through this in a more visceral way. And probably for a lot of people that’s because they don’t feel like they have the tools to go through that in a visceral way. They don’t have the sense of life’s meaning perhaps, or suffering’s meaning or a sense of the transcendent.

    And so we should see in that, I think, an impoverished idea of what it is to be a human. Of course, everybody wants to avoid suffering when they can, but if you’re fortunate enough to know that suffering can have meaning, and if you’ve ever seen families invite siblings into the loss of a newborn child, it’s something which can be defining and even unifying in a profoundly vulnerable and raw way that is again, just part of the human experience, which has allowed us to, I think, in so many ways, to build the culture that we have and even build the great and beautiful things in Christian culture, to know that suffering has meaning. And so the poverty of a culture that says we absolutely have to avoid this thing should give us pause. Anyway, with that said …

    Susannah Black: That’s definitely something that I’m glad you hit. One way to read this is, well, if there are children who have things like Down syndrome, where they are capable of having wonderful lives, then we should accept them. But if there’s a child who is going to die anyway, shortly after birth, almost certainly, then abortion is a more understandable choice. And obviously, everything’s understandable, but the idea that it’s easier to deal with the death of a child if you control when that death happens, or if you can pretend that it wasn’t a child, or that you can just tidy things away more efficiently through getting an abortion, rather than waiting for the child to die in his or her, or God’s, time. That’s sending a message to yourself and to your other children and to everyone else that this is how we should think about our children. What we ought to do is tidy them away if they’re going to cause us emotional pain and deny that they ever actually existed.

    J. D. Flynn: Right. The same thing I think that we do with the growing tendency towards euthanasia of people with dementia. Living with someone who has long-term dementia is a terrific cross. Just a really serious, terrible cross in many ways. It’s also the kind of thing that helps us to better understand what it is to be a person and helps us, I think, to fulfill the end of being a person, which is to love in a way which is beyond our perceived capacity for love, and to deny ourselves those things is to deny ourselves the kind of grace and capacity that comes with the demands of love, right? When we’re in a situation, even the situation of a child who will be born and then live only for a very short time, and we have this profound outpouring of love and intimacy, and then mourning and grief, those are the human things, and we’re better for them even well before we know that.

    IV: J. D. Flynn: Parenting Kids with Down Syndrome

    So my kids. So my wife and I got married in January of 2006, we just had our anniversary. And we were pretty young when we got married. We were pretty devout. We went to Steubenville, which is a very devout Catholic college. We thought that we would be the stereotype of devout young Catholic kids who have a lot of kids. And we were excited about that. And then we didn’t. We tried to get pregnant and we didn’t get pregnant. And so dealt with infertility for several years. And my wife had a couple of surgeries to address some medical issues along the way, but it just wasn’t in the path of providence that we would get pregnant then, or that we would stay pregnant.

    And we had some miscarriages along the way. And so after a couple years of trying to have kids – and really infertility is a difficult thing as maybe you guys know, if you know people who have experienced infertility; it can be really difficult on a marriage and alienating in a marriage. And we saw after a while that in a certain way, if you come from the kind of Catholic community that we come from, where big families are the norm and big families are the basis of social life and things like that, you can in a certain way, in the aim of trying to have a baby, it can become a kind of idolatry, in which that becomes the goal always. And you separate that from every other aspect of your married life. And it just becomes not a healthy thing. So it wasn’t a healthy thing for us anymore. And so we took a break from that. The first time we decided that we would pursue adoption, we really weren’t ready for it because we were pursuing adoption as a substitute for not being able to have a baby. And so we had a lot of the woundedness of not being able to have a baby and the impacts of that on our marriage. And we carried a lot of that into the adoption process. And so we were, ourselves, I think, very raw and had a lot of unresolved issues there.

    Adoption is not fundamentally about you, and it’s not about the acquisition of a baby to make you feel better about yourself. Adoption, however it happens, is about a child who needs a home and needs the stability of a home and the stability of a family life. And you can’t commodify that. And we could see that that was where we were at first. So we started down the adoption path, and then we took a little break and we mourned what our hopes were for our own family. We put on the cross our perceptions about what we thought our family life would be like. And just tried to open ourselves more to what we thought God’s plan for our family life might be.

    And then after we did that for a while, maybe six months or something like that, we went back to adoption. We adopted our children through an adoption agency. We live in Colorado, an adoption agency here in Colorado, an ordinary adoption agency. And our children were born in Colorado. When you adopt a child, you have the home study process and all these things. And then there comes a certain point where there’s this very weird thing that you have to do, which is you have to basically fill out a form, it’s a checklist effectively, and you have to check off the kind of child you would be open to having, and what kind of child are you open to adopting, which is weird.

    It feels a little bit too much like an order form, right? And so our MO with that was to approach it with the idea that any kind of child whom we could conceive, we should be open to adopting, because again, we didn’t want to be consumers about it. And we wanted to be as open to having children in whatever way God would give them to us as we would when we were trying to have a baby biologically. And so, they list all these conditions. And we just checked off all the conditions that we thought, well, these are things where we could conceive a baby who would have these things. So of course we should be open to adopting a baby who would have these things.

    And then some other conditions that are not genetic, like fetal alcohol syndrome or prenatal exposure to drugs or things like that. We tried to be as open as we possibly could be while recognizing that there were certain, very serious medical conditions that … we were twenty-six or something like this when we were doing this, and we didn’t have any money, so we recognized that there were certain things we just didn’t have the material capacity to be able to sign up for. So anyway, we handed in our form and we weren’t trying to adopt a child with Down syndrome or any other kind of genetic condition at all. We were just wanting to adopt a baby.

    And so we waited and we were matched with one mom, who was going to have a baby and then when she had the baby, she decided to parent the baby, which was really hard for us, but also good because it was a good reminder for us that the natural family is the ordinary thing and the appropriate thing. And that it’s actually a good thing if a mother is able to raise her child: that’s the natural order of things and as a society, we should be more invested in that than anything else, the integrity of the natural family. So although that was hard for us, it was also I think a good attitude check for us.

    So that’s probably, let’s see, Labor Day of 2011. Then in December of 2011, at the beginning of December, our adoption agency called us. And they said there was a lady who was going to have a baby and the baby had Down syndrome. And she actually wasn’t working with our adoption agency, but was then that we learned that here in Colorado, where we lived, of all the families who were waiting to adopt a baby, there were only two families who said that they were open to adopting a child who had Down syndrome, which we were sad to hear. And so we’d be open to adopting him. We’d like to move forward and those kinds of things. We didn’t know anything about Down syndrome. I don’t know that I ever really met or had a conversation with a person with Down syndrome before that.

    So what do we do? We watched a bunch of YouTubes about Down syndrome and read some books and talked to some people. And we were getting very excited about the baby and these kinds of things. And then right before Christmas of 2011, our adoption agency called us and they said that the baby had been born and his mother had decided to parent him. And so again, we tried to be very glad about that and give thanks to God and the integrity of the natural family, but we were mostly just saying it. We had our heart, I think, set a certain way and we thought this was going to happen.

    So it was Christmas. So we tried, we looked at the crèche and we told the baby Jesus in the crèche, well, you’re the only baby that we need, but I don’t think we meant it. Well, a couple days after Christmas, our adoption agency called us and they said it wasn’t going to work for her to parent the baby. And did we still want him? And so we were in Chicago and we got on a plane to Colorado that day. And then we drove up to Fort Collins or to Greeley, Colorado, where he was born the next day. We met with his birth mom. We met her at a diner. We ordered pie and she ate … she decided she liked my pie more than her pie so she ate it and what are you going to say in that situation? So I let her have it.

    And then we went and met the baby and gosh, it was just, yeah, it’s a beautiful experience of becoming a parent for the first time, however it happens. We saw our son and he saw us and he was in the NICU and he was on oxygen and he had some feeding problems; Max has Down syndrome, but he also has some other serious neurological problems. And so he had some challenges, but we just saw our son. He had a different name. She had given him a different name, but she said that we can name him what we wanted to name him. And so we were all in the NICU for a few days, getting to know the baby and Max’s birth mom was there and we were there and everything.

    And then it came time for … it was the time when we were going to take him home the next day and visiting hours were ending. And suddenly she was a visitor, which was a role reversal all of a sudden. And so she asked if she could have a little bit of time with him. And so they were sitting in a chair in the NICU and she was talking with him about all the things that she wanted for his life and all the things she hoped for him and these kinds of things, and they were just sitting together. And so Kate and I went to get some coffee and we didn’t have a car seat so we went to buy a car seat and some baby clothes and stuff, because we didn’t have any of that.

    And we came back and she was still there and she was just holding him and she was crying. And so we were waiting in the other side of Max’s little NICU room and leaning against the counter. And she stood up and she was probably ten feet away. Watching her walk those ten feet from where she was in the chair to where we were, was like Mary walking with Jesus to the cross. Like this is the whole way of the cross, this mother who is going to put her son in someone else’s arms and leave. And we just saw in that a kind of selflessness that was incredible. We realized, we talked about it later, we realized we wanted to model the whole of our parenting on the ten feet of her walking across that room to give her son up.

    And she did. She put the baby in Kate’s arms and she gave Kate a hug and she left. So we named him Maximilian Kolbe because Maximilian Kolbe made a life-giving sacrifice for someone else. And so did she, and we wanted to honor that. So that was Max. And we took him home and a lot to learn about oxygen and therapies and these kinds of things, but a graced time. And then about a year later, a little less than a year later, we got a call from our adoption agency. It was early December of 2012, we got a call from our adoption agency, it was a Thursday, they said that a couple had come in that morning and they were going to have a baby and the baby had Down syndrome and they were hoping for two things in an adoptive family: that the adoptive family would already know about Down syndrome and that they would be devoutly Catholic. And did we know anybody?

    And so we called our confessor, the priest who is a spiritual advisor to us. And we said, well, we think we’re going to adopt this baby. Do you think that’s very prudent? And he said no, I don’t think it’s especially prudent, but I know you guys are going to do it. And thanks be to God for that. So we decided we would try to adopt the baby. And so we went and we met her birth parents the next day and talked with them and they decided that they would make an adoption plan and we would adopt her. And so our daughter Pia was born December 9th, 2012 here in Colorado. And it was a little bit different because we met her on the day she was born and these kinds of things.

    And she stayed in the hospital for a couple of days and then we took her home. And again, the selflessness of her birth parents was the thing that stands out to us the most about that. They knew that their child needed things that they couldn’t give and they made a difficult choice. And I have to admit that I think that would be incredibly difficult for any of us. Five days after Pia was born, she was diagnosed with a kind of cancer, a rare kind of cancer called transient myeloproliferative disorder. And it’s a kind of leukemia that only children with Down syndrome get, and there’s really no treatment for it. So either you get better, which most people do, or it’s terminal, those are the options. So we found out about it at Pia’s five-day checkup and she was admitted to the hospital and it was incredibly providential that we had her five-day checkup when we did and that we didn’t delay it because she had two heart attacks that night in the hospital.

    And if she had been at home, she would’ve died, but she was in the hospital and so her doctors rushed in and were working on her actually when she had the second heart attack, so saved her life. And we spent a couple of months in the hospital with the TMD and then she did get better, which is the common course of things. And then shortly after she got better, we moved to Nebraska because of work. And then on Pia’s first birthday, she’d just been a little bit sick, seemed a little bit sick, seemed like she had the flu. So we took her to the doctor on her first birthday and she was diagnosed with another kind of leukemia, a more typical kind of leukemia. And so she and Kate spent about a year living in the oncology ward of Children’s Hospital in Omaha.

    We lived in Lincoln, Nebraska. So it was about an hour back and forth, but Kate and Pia basically lived in the hospital for about a year. And that was actually a surprisingly blessed time for us. It was obviously a difficult time, but you see, but grace becomes … where difficulties are, grace abounds all the more, I don’t know how that goes, but it was just a period of extraordinary grace for us in which we saw God’s providence and the consolation of God in a lot of ways. And, thankfully children with Down syndrome are more likely to get leukemia than other children, far more likely to get leukemia than other children, but they’re also far more responsive to chemotherapy than other children.

    So it’s more common for them to get it, it’s also more common for them to get better, which Pia did. And so she did until she came home and that was now a long time ago. Knowing and loving children with disabilities has become in a certain way a defining aspect of my life and a transformational aspect of my life and the life of my wife. And we’re all the better for it. That’s how they got here and lots of things have happened since then, I guess.

    Peter Mommsen: Wow. That’s amazing. Thank you.

    Susannah Black: Thank you so much for that story. If you’d be willing to, I’d like to attach a picture of your kids, all of your kids. Do you want to talk about your youngest son?

    J. D. Flynn: Poor guy. We talk about Down syndrome a lot; he never gets in the talk. So thanks for asking. I’m really grateful. So several years later, my wife said to me, “I think we should start praying again that we will have a baby.” And I didn’t want to pray for that because I didn’t think that it would happen. I just thought it would be a lot of emotional up and down to be praying for something. Basically, I didn’t want to get her hopes up in any meaningful way whatsoever.

    And so I said to Kate, I don’t really want to pray. I don’t want to pray for that. I don’t want us to do that. I think we just have to accept that this is where God has us etcetera, and Kate said, “Well, I’m going to pray for it anyway.” And so Kate went to the canonization of Mother Teresa, whatever year that was. Mother Teresa was known to be a great intercessor for infertile couples. I didn’t know that, but apparently Mother Teresa was a big intercessor for infertile couples when she was alive. And while she was there Kate prayed that we would get pregnant and we did the next month. So I guess score one for Kate.

    It came as a total surprise. Certainly to me! I think it still came as a surprise to her. I only started entertaining the possibility that she should take a pregnancy test because one Sunday after Mass, she asked me to go out and get hamburgers for lunch. And then while I was going to get them, she texted me and said that I should get fries from a different place because the fries were much better from that place. But the ketchup at that place was bad so I should stop at the grocery store and get a different kind of ketchup. And I realized, this is only what a pregnant woman says. So I came home, and I said “I think you’re pregnant,” so we took a pregnancy test the next day and sure enough.

    And so our son Daniel Casey is four. And is a great blessing. A totally unexpected and great and beautiful blessing. Davy’s growing up … we call him Davy. He’s growing up kind of weird. Children with Down syndrome for a variety of reasons are typically born to women who are older. And so oftentimes if they have siblings, they’re at the tail end of the siblings. They’re the youngest in a family, in a family of other siblings. And so to have two older siblings who have Down syndrome is an unusual thing. And so he’s interesting because they just do things very differently than most people do.

    They play a lot differently than most kids play and think about things a lot differently than most kids think. And it doesn’t occur to him that it’s different. It’s just how his brother and sister are. And in a certain way, how they are is even how he wants to be. He’ll come to us sometimes and ask why he can’t do things the same way that Max and Pia can. And so for him, he’s beginning to recognize that they’re different, but their difference is not, for him, a deficiency. It wouldn’t occur to him because it’s normal. And so it’s really a beautiful thing. I was sometimes worried “will he resent that?” Will he resent, over time, the amount of attention that they require and the way in which they can be … as I said, Max has a lot of other neurological problems.

    So sometimes those can be disruptive on ordinary family things or the things that Davy wants to do, and I’ve wondered, will he resent that? And of course we can’t know, but thus far I’ve been really edified and actually really blown away by the degree of virtue that he has and the way in which he responds to them. And again, the way in which they are completely normal to him. Sometimes Max just shouts a lot because of some of his other neurological problems; he’ll just get upset about something and start shouting about it and things like that. And it’s funny, you can watch and you think like, boy, if anybody else walked in here, they would call the police. But there’s Davy just watching Peter Pan and not even noticing this kid sitting on the couch, shouting in his ear right next to him. It’s kind of amazing, but yeah, so he’s a great blessing and a great gift to our family, for sure.

    There are myths about Down syndrome that are not helpful: that people with Down syndrome are angels with perfect wills and that God sends them here to teach us all lessons about how to be nice and things like that. It’s not true. People with Down syndrome are people with an ordinary range of human emotion, ordinary social and emotional needs, and those kinds of things, but still, if we’ve never seen a person with Down syndrome and we get a prenatal diagnosis, the thing which is foreign is far easier to fear. So that’s part of the reason why we try and put our kids on social media and things like that as much as we can.

    Susannah Black: J. D., thank you so much for coming on. This has been fantastic and we encourage our listeners to follow you on Twitter and to follow your work at The Pillar and yeah, let’s stay in touch and thank you so much again.

    J. D. Flynn: Great. Thanks a lot. Okay.

    Susannah Black: Bye-bye.

    J. D. Flynn: Bye.

    Susannah: Thanks for listening! Be sure to subscribe on iTunes or your app of choice, and rate us as well. Tune in next week for a conversation with Plough contributor and adult convert to Orthodox Judaism Kelsey Osgood, and Leah Libresco, a dear friend, much-published Plough author, and in fact contributing editor to Plough.

    Contributed By Peter Mommsen Peter Mommsen

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

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    Contributed By SusannahBlack Susannah Black

    Susannah Black is a senior editor of Plough.

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    Contributed By RosemarieGarlandThomson Rosemarie Garland-Thomson

    Rosemarie Garland-Thomson is a disability justice activist and scholar and writer.

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    Contributed By JDFlynn J. D. Flynn

    J. D. Flynn, editor-in-chief of The Pillar, is a journalist, canon lawyer, and advocate for the full inclusion of people with disabilities in the life and ministry of the Catholic Church.

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