Is it possible to talk about healing a genetic disability without in some way discounting the value of the people who live with these disorders? What will the world be like for people with disabilities as these populations continue to shrink? Is eliminating disability even a worthwhile goal?
Guests appearing in the episode:
Mary Forr Szoch
Mary Forr Szoch is a graduate of the University of Notre Dame where she majored in political science and philosophy. After graduation, Mary received her Masters in Education from Notre Dame through the Alliance for Catholic Education. Mary has taught high school and middle school and has founded a non-profit for adults with special needs. In 2016, Mary became the Director of Life Issues for the Archdiocese of Washington, and in 2019, Mary became the Manager of Catholic Policy and Advocacy and Director of the DC Catholic Conference where she responds to all local legislation impacting the Archdiocese of Washington.
Transcript
Baby Doe was born on a Friday evening in Bloomington IN in 1982. Before that evening, his parents, John Doe and Mary Doe, were prepared to welcome baby Doe as their third child. What changed at his birth? They discovered that he had Down syndrome and that his esophagus was not properly formed. Baby don't needed immediate surgery. If he was to be able to eat on his own. This malformation is more common in babies with Down syndrome, but it can happen to anyone. Like any surgery, the procedure that fixes it carries risks, but the outlook is good. Were he to have the operation, in all likelihood, baby Doe could carry on a normal life well, as normal as anyone else living with Down syndrome, his prospects were good, of course. If he had had the surgery, we wouldn't be talking about him today. Baby Doll's case was a matter of contention. 2 local pediatricians recommended that the baby be transferred to a larger hospital for the surgery. The OB who delivered him and three of his colleagues at Bloomington disagree. They argued that baby doe should be kept where he was and provided comfort care, meaning that he would receive pain medication only until he died of starvation, dehydration or maybe even pneumonia from stomach acids reaching his lungs. It's hard to even tell this story. It's hard to imagine that this could seem like a solution to some people. It's even harder to believe that John Doe, having worked as a teacher of children with Down syndrome, decided that it was a life he didn't want his third child to live. He didn't want this child to be a member of their family. And possibly most heartbreaking to hear is that Papito died at three days old while his case was being argued in the Indiana Supreme Court with a number of adoptive families ready to receive him, calling the hospital pleading for his life. We know he wasn't given any nutrition or hydration in the short days. I wonder whether he was held during that time or if he was left on his own with comfort named Morphine. As you can probably imagine, when news of this case became national, it was met with public outrage. Within days, President Reagan enacted special protections for people with disabilities to prevent similar occurrences. At least in the United States, these babies are safe for now. The most chilling part of this story for me is where I read it in the 1985 copy of a book called Should The Baby Live. It's a book that argues that should babies be born with disabilities they didn't see or or couldn't foresee in time to have an abortion, it's up to the parents to decide whether their child should live. Essentially, a disabled child has no particularly human rights. His rights are more akin to that of a kitten. You can't say torture him because he feels pain, so that would be cool. But whether or not you kill him. That's up to his owner. He is the arbiter of life and whether this little one ought to be put down. And you may be thinking. Gosh, that is so awful. I can't believe people were thinking like that way 35 years ago. But thank goodness we live in the now when nothing so awful could be considered. I think you know where this is going. In 2013, at least three different articles that I know of were published in respected journals arguing in favor of this practice. What they want to call post birth abortion. Just Google baby euthanasia and you'll see that this topic has been considered in the last several years by the New York Times, the Smithsonian's New Scientist. European countries like the Netherlands are already practicing it. If you're thinking that sounds like infanticide. Then you would be right. With countries like Iceland making headlines about their accomplishment of eliminating Down syndrome through abortion, not treatments. And the growing support of euthanasia as a response to babies with disabilities. It isn't even a leap to imagine that in addition to erasing genetic diseases, genetic editing will be used to target populations with genetic disabilities. And while it does seem a significant moral difference to eradicated disorder by tweaking genetics gone awry rather than by eliminating the people in whom the disorder manifests. I still have to wonder. Is it possible to talk about healing a genetic disability without in some way discounting the value of the people who live with these disorders? What will the world be like for people with disabilities? As these populations continue to shrink? Is eliminating disability even a worthwhile goal? I'm Samantha Stephenson. And this is brave new eyes.
The message that we might be communicating is that we wouldn't want them around if we could have prevented them, we. Would have.
We don't talk about a pencil and say, well, it's inherently good. It's inherently evil.
We all are given this gift of suffering. This moment where God is asking us to walk closer with him, to cling to the cross.
It's pain and it's suffering.
And none of us get out of it.
Or. That point where we're trying to get. To a perfect. That. An insane amount of pressure on people to earn or deserve their place.
We are dealing with not simply shaping a life, but actually shaping the person.
We have the power to change our genetics.
But should we?
And how might using this power change? Who we really are. This is bioethics in the light. Of faith. Welcome to Season 1 with Brave new US.
All we have to do is look at the abortion rates of people who are prenatally diagnosed with Down syndrome. We hear countries like Iceland saying, hey, we've cured Down syndrome. No, you've actually just eliminated all the people who have it. And by doing that, countries like Iceland. Are missing out on these people who can teach us so much about love and joy and happiness, and how to suffer gracefully and and and how to. How to endure challenges and and face life each day, as if it's a gift? Because it is a gift.
This is Mary Zack. She wrote an article called new forms of Discrimination against the disabled for the National Catholic Bioethics Center. And she has a personal stake in exploring these issues. Her sister Maria has special needs and Mary has become passionate about advocating for people like her. She started a nonprofit called Teaching together that partners with Catholic schools to provide jobs to people with special needs as teaching and library assistants are taking care of the grounds. She's well attuned to the fact that discrimination against the disabled is not something we said goodbye to with World War 2. It's actually alive and well today.
Abortion is just one area where people with disabilities are are facing discrimination. We also see it in the assisted Suicide movement, which says basically. Once someone has a disability, their life is no longer worth living, because all of the research and all of the data collected from people who have taken advantage of the assisted suicide legislation where it is legalized. All of it shows that it's not about pain or suffering. It's about living life with a disability. We see it again in the in vitro fertilization culture, where babies who are are. When a embryo is formed and that embryo has some sort of. Medic. Defect. It is just immediately discarded. We see it when implantation takes place and the genetic testing is done once again and and any child who tests for a genetic abnormality of some sort is systematically aborted.
As I'm talking with Mary, I think how lucky her sister was to have her. Mary is beautiful. Her smile radiates joy. How wonderful. When you're growing up and struggling to fit in to have a sister who advocates for you, like Mary does. As we talk some more, though, another thought occurs to me. Maybe it's Mary who's the lucky 1. Maybe the joy and the kindness that Mary radiates actually comes from years of practice caring for and learning from Marina. Maybe Mary is the lucky 1. Maybe. It's both. I loved what Mary had to say about how people with disabilities really enrich our lives.
When we see these people at the grocery store or in the street, everyone immediately recognizes that these are people who bring joy and hope to our lives, right? There's the the man who is working at the grocery store and says hello, the man with Down syndrome. You can't not smile when you see him. And you can't not feel like your day has just gotten better. It's just. These these people. Make us more they make us more human. They make us more compassionate and more loving. But at the same time, I think society has also put forward this narrative of their life is impossibly hard. They, and and their parents lives, are impossibly hard and. Certainly there are many, many challenges that are faced by people with disabilities and and there are many, many challenges that their parents face and their brothers and sisters face. But that's the same for everyone, right? Every everyone's life has challenges in it. Everyone's parents face challenges because of their children. Every brother and sister face challenges. So. So I think we have created this culture of fear. Though we know objectively, we are happier and more hopeful and more. We're more filled with love when we're around. People with disabilities. Our culture is afraid of it being too close to home. It's it's the person that you want to say hi to at the grocery store, but you don't want to see every day in your in your house and and that's a problem we need to address because it is. It's just straight up discrimination but it. But like all forms of discrimination, it comes from a lack. A lack of true knowledge about people and a a lack of friendship with people.
It is a lack of knowledge of what is life with these disabilities, like what are the people with these disabilities like? So it strikes me that if we really want to create a culture of life, we need to get beyond posting ultrasound pictures. We need to address the fears and overwhelming burdens that drive people to see abortion as a kind of solution. Even people who would never consider abortion need our support in navigating through these kinds of diagnoses. Listen to how Mary unpacks what is the root of our fears, and how we might create a more hopeful future by changing the way we relate to people with disabilities.
It's fear, you know, I think that immediate thought of ohh, my gosh, what will my child's future be like? Because I think when anyone imagines having children, they imagine their child having. A future similar to what theirs was, or better than what theirs was. And I think that when we, when people hear that they are going to have a child who will have a a genetic abnormality, I think that the immediate reaction is fear. Will my child be able to talk? Will my child be able to read? Will my child be able to play sports and, you know, suddenly your dreams. Of your son playing in the NFL and throwing the winning touchdown pass have gone out the window and they're being replaced by the thought he might never walk. And so I think that we can't say that that's not a scary position to be in. But what we have to say is. Here are the wonderful parts about having someone in your life who has a disability and life is worth living regardless of any sort of disability, and it's really problematic when we base how excited we are about a person. On what that person can do.
I wholeheartedly agree with what Mary is saying. Every person has value, but it can be so hard to articulate. What that value is or what it's based in, you know, how do you say that someone has value when they might not even be capable of valuing themselves?
I think first we need to recognize that every human being, regardless of stage development or capability, every human being makes an impact. Even a a child who conceives in his mother's womb and and lives. Only two days that child has an impact, even if it's only on that child's mother and father. You know, even if it's, it's just the the brief knowledge that, hey, I had a son or daughter and and that son or daughter is now in heaven interceding for me that that life made an impact. God said I formed you in your mother's womb. He knew us. He knows everything about us and know the purpose that each one of us has. And sure that purpose may include. Food speaking or not speaking, and they include playing sports or not playing sports. It may include being a genius or not, but but we all have a purpose. It's given to us by God, and it it was there from the moment we were confused, and I think I think the challenge is that sometimes it's really difficult for us to see. For the purpose, sometimes it's really difficult for us to see the purpose of suffering, but each life makes an impact beyond what we could ever imagine. And and it makes an impact on on people that. We could have. We could have never thought, for instance, a a friend of mine is is currently in a. Sort of semi comatose state and when she went into that state I was teaching 6th grade and I told my students about her and asked them to pray for her. And now, seven years later, 1 little girl I know of, maybe, maybe many of them, but one one girl who's now in high school. Still praise for her every single day, and she she says that, you know, my friend changed her life because she made her recognize that every breath is a gift and every every minute of walking is a gift. And every Monday and task that you have to do as a gift. And that that's something that my friend's family could never have anticipated. And and that, you know, anyone who just sees her sitting in her wheelchair or lying in her bed might say like, well. What impact is she having? Why God and and we don't know why, but we know there's a purpose and we know it is. It is making a difference she is making. A difference in people's lives so.
When I ask about genetic solutions to Down syndrome, Mary offers some helpful distinctions.
So I think we need to be careful when we talk about eliminating Down syndrome. I think you know, when Doctor Jerome Lejeune, who discovered Down syndrome, when he when he talked about finding a cure for Down syndrome. What do you wanted was for people with Down syndrome to be treated with the dignity that they deserved. He wanted the the heart problems that people with Down syndrome are typically born with to be able to cure that many times. Someone with Down syndrome has Alzheimer's. Towards the end of life for dementia. He wanted that to go away. The susceptibility to certain diseases. To go away. But I think we have to be very careful because. There is something about. People with Down syndrome. That that is because of that extra chromosome that makes those people such a gift, right? That the person, the, the personality that is connected with that tries to me it's like they. It's like along with that trisomy came and extra ability to love we need to be really careful in separating wanting to wanting to cure whatever suffering comes with that from wanting to quote UN quote cure Down syndrome. Because Down syndrome itself, I have never met someone with Down syndrome who I. Didn't. Think was one of the most loving people in the world and and that's not something that we need to cure. That's something that we need more of we need. We need more people learning how to love, like people with Down syndrome do. But certainly I think that we can work to cure the the ailments surrounding that. I think when we're as a society culturally seeking to eliminate it, I think it's a search for perfection in a very misguided way, right? It's looking for physical. Perfection. Instead of looking for things that actually matter, like kindness and love and generosity and a welcoming spirit, if we were all trying to perfect that. We'd, you know, we'd be treating people with Down syndrome very differently. We'd be having them in all of our classrooms, in all of our schools. We'd be having them working in every job in America.
I feel kind of humbled. I haven't spent much time with people with disabilities myself. But our conversation reminds me of something we talked about in episode 1 when we were discussing human enhancement and what kinds of traits we value. Who gets to. And I wonder if it's not some kind of prejudice within my own heart that leads me to see someone with Down syndrome as someone who's lacking. Because Mary's right, the people I have met, they don't struggle with kindness and hospitality in the same way as that I do. What if it's not them? What if it's actually my own way of interacting with the world? That's the impoverished 1. If love is really what matters in this world. Then why is it a deficit to love the more serious?
1.
Living with a disability is so repulsive. To people that they would rather die than than live with that disability. I was in DC at the City Council hearing back in, I think 2016 when assisted suicide was legalized here. The woman, who was sitting next to me was very much in favor of legalizing assisted suicide and I said to her, you know, why is it what are? What are you? Why do you want to legalize assisted suicide? And she said. When I'm old or when I'm sick, I don't want anyone tying my shoes for me and I don't want anyone wiping me. That's disgusting. What a terrible. Way to live. And I said Ohh, you know, actually that's my older sister has physical and intellectual disabilities and and those are challenges. She faces every day and she said to me, well, that's disgusting. And it was very hurtful, of course, but. But I also. Thought we have a real as a society we we really struggle with being vulnerable and and so we struggle with being able to love because to love you have to be vulnerable.
Something clicks for me in this story. Our society struggles so much with anxiety, with putting on facades and trying to portray ourselves as having it all together. There is so much fear of vulnerable. Study. And yet, that's exactly what Mary sees as key, as what puts people with disabilities a step ahead of the rest of us.
And for people who have physical and intellectual disabilities, they're automatically they're like a step ahead of us in the loving game because they are, by their nature, vulnerable, right? They they need other people's help to do things that the rest of us could just do on our own. In some cases, some some people with disabilities don't need anyone's help at all, but someone you know, like my sister. Needs my help to. Tie her shoes or, you know, sometimes with going to the bathroom or whatever it may be. And and I think that this culture of. Fear around being vulnerable is really problematic because it leads us to a spot where we say once I can't do everything for myself. My life's not worth it anymore. And and that's not a good spot to be in.
So by being forced into vulnerability, it actually. Frees people from the illusion that we all scamper frantically to keep up this impulse to create a perfect generation. It's all about fear. Fear and a false sense of our own control.
I think we're at a point where we're trying to get to a perfect generation, right? Like if we look at abortion rates, we see that baby girls are aborted at a higher rate than baby boys. We see that people with disabilities are systematically aborted. And you know, we already have a culture that, you know, within vitro fertilization where you can choose what, what traits you would like the the mother or the father. Of. Of the child to have as a culture. Whenever we celebrate our differences. We do. We're we're better, right? It's the different ideas that that propel us to better solutions and it's the acceptance of each other that really helps us to grow. Not just intellectually, but in our capacity to love one another. And so I think that as we strive. For for prop. Section. We're going to start seeing more and more faults in ourselves. I think self esteem is going to plummet and and has been plummeting. You know, I think all we have to do is look at Instagram, where you can change everything about yourself in a picture so that you look a certain way. And we've seen with teenagers what that's done to their, to their self. Seeing and to their fear of actual interactions. With other people. Where, heaven forbid they may see you in a non perfect. Right. And and I, I think we're headed down a very, very bleak pathway. And and I think the solution to it is to spend more time with people with disabilities and to celebrate their gifts more because we can learn so much from them.
So in the end, you can probably guess Mary the answer. Does Down syndrome need fixing?
Absolutely not sure if I could eliminate the heart defect that many of those babies are born with. Do that in a second, but people with Down syndrome are kinder, more patient, more loving, more welcoming than any of the rest of us. So we could all use an extra dose of whatever it is they have.
Which is great to say, but I wanted to know more. If we're going to take something like a genetic solution off the table for fixing somebody with disabilities. What are the solutions out there? What treatments are available and how can you deepen this understanding of the role of disability in God's Kingdom? Oops, next time on brave new US.
We will be well. We will know will be, will be, will.
Braveness it is written and produced by me, Samantha Stephenson. Special thanks to Lauren Klingman Mackenzie Kim. Original music all will be well by Jessica Gearhart. You can find jessica@jessicagearhart.com, as always. The full interviews are available on our Patreon. That's patreon.com slash.
Well. Well.
Brave new US on our Patreon. You get access to the full interviews, recommended reading, and a forum where I personally. Your questions, God bless and thank you for listening.
Well, well, well, well, we will. We will. Well, will be. Well, will be well. Be. We will be we will be will we will, we will. Be well, be well. Will will be, will be, will be, will be, will be, will. Well, will be well. Will be well and I will be well. Will be well.