Hidden Brain - What Is Normal?

Episode Date: April 8, 2024

Anthropologist Tom Pearson was devastated after his daughter Michaela was diagnosed with Down syndrome. When he began to examine that emotional response, he found himself wrestling with questions that have roiled his field for decades. Early anthropologists would often compare people of different backgrounds and abilities, asking questions like: How is one group different from another? Which one is stronger or smarter? And how do we understand people who don’t fit our expectations? This week, we talk with Pearson about his family’s story, and the evolution of our thinking on disability and difference.If you liked today's show, be sure to check out these classic Hidden Brain episodes:"Emma, Carrie, Vivian""Why You're Smarter than You Think" 

This is Hidden Brain. I'm Shankar Vedantam. In the middle of the 20th century, the influential psychoanalyst Eric Erickson came up with a set of theories about human development. In the earliest stage of life, he said, babies need to gain a sense of trust in their caregivers. To bring this about, the psychoanalyst recommended that parents shower their children with affection and quickly respond to signals of distress. These concepts were to become influential in the field later known as developmental psychology. In 1944, Eric Erickson's ideas were put to the test in his own life. His wife Joan Erickson gave birth to their fourth child, Neil. The labor

proved difficult and Joan was sedated after the birth. Meanwhile, doctors pulled Erick aside to give him some bad news about his newborn son. The doctors said that baby Neil suffered from what they called Mongolism or Mongolian idiocy, what is today known as Down syndrome. Neil was going to be developmentally challenged and would likely die within a short period of time. Rather than burden the parents with the care of such a difficult baby, the doctors recommended that Neil be immediately sent away to an institution. The doctors recommended that Neil be immediately sent away to an institution. Tormented by the decision before him, Eric Erickson did what a lot of us might do in his situation.

He phoned a friend. But in his case, the friend happened to be one of the most famous anthropologists of all time. A scholar who had challenged the idea that our biology makes us who we are. Very much like Eric Erickson himself, Margaret Mead believed in the power of nurture. She believed that we are less the product

of our cells and genetic codes, and more the creation of our families, cultures, and societies. our families, cultures, and societies. This week on Hidden Brain, the surprising advice Margaret Mead gave Eric Erickson, and how we draw distinctions between differences and deficiencies. From its inception, the field of anthropology had a problem. Western scholars in the 19th century, writing the code tales of colonial conquest, traveled to the ends of the earth to publish ethnographies of diverse peoples. Using the vocabulary of the emerging field of evolutionary science, anthropologists created taxonomies of people, like Darwin had done with his species.

Such a comparison of people involved drawing lines between them and posing questions like, how is this group different from another? Which one is stronger or smarter? Almost invariably, these lines involved racial classifications. Almost invariably, these lines involved racial classifications. The anthropologists concluded that groups outside of the West were more primitive, less evolved versions of humanity, that they were less smart, less able. The early biological anthropologist Samuel Morton ranked intelligence by measuring the size of human skulls. White people had the largest skulls and thus the greatest mental capacity, while Native

peoples and African Americans lagged far behind. These theories about fixed traits and stark differences between groups dovetailed with the eugenics movement. Since biology makes us who we are, shouldn't biology determine who should marry whom, who should and shouldn't be having children, and which babies were worth saving? A counter-revolution to these ideas erupted in the 20th century. A new wave of scholars challenged the notion that some groups were biologically

superior to others. Leading this charge was a Pennsylvania-born anthropologist named Margaret Mead. Margaret Mead, I mean, she probably is the most well-known anthropologist that has ever lived. She was an iconic figure in the 20th century. Tom Pearson is an anthropologist at the University of Wisconsin-Stout and author of a book about Margaret Mead. She kind of became quite publicly well known early on in her career based on her research in Samoa in the 1920s, 1930s, which was focused on the sexual lives of young girls. In her field work, Margaret was focused on the sexual lives of young girls.

In her fieldwork, Margaret Mead followed the standard anthropological approach of drawing differences between people in the U.S. and people in Samoa. She described the rituals of the Samoan people, their approaches to child rearing, their sexual practices. But unlike others, Mead concluded that the differences she saw were neither innate nor shaped by biology. They were the creations of culture, upbringing, and social norms. The beliefs and practices of American adolescents were not superior to those of Samoan adolescents. They were just different. This was in the context of the early 20th century eugenics movement, where there was

a new era of anthropologists who were questioning a lot of the ideas that surrounded eugenics and that there are these sort of innate characteristics that differentiate groups and that determine that some people are inherently better than others. And they were proponents of a perspective that emphasized this notion of cultural relativism. That we want to try to understand different cultures on its own terms and not, you know, trying to evaluate whether one way of doing things is better or worse. And that just that this basic idea that the way people behave

and the way in which they come to see the world is not something that is determined by underlying biology, but is shaped by culture, something that's learned. Margaret Mead and other thinkers like her established a new branch of the field, cultural anthropology. They weighed in on the classic nature vs nurture debate and came down heavily on the side of nurture. Instead of one group being superior to another, they argued it was a mistake to rank groups

as being more or less advanced. Judging others using the yardstick of one's own group as the baseline for what was good or smart said more about the judges than the people being judged. This is from an interview with Margaret Mead in 1976. We worked with the assumption of the psychic unity of mankind. What did that mean? That's a nice phrase. That meant that we were all members of the same species, and that however different the conditions under which we lived,

whether there were people who didn't count beyond three or four, it wasn't because their capacities were less. We assumed that those differences were due to their culture. The word culture... Being different was not the same as being deficient. Always remember that you are unique, Margaret Mead advised, just like everyone else. So this was radical right in the early 20th century. And Margaret Mead, she represented this new version of anthropology. So she's this sort of like progressive, almost radical

figure and close friends with Eric Erickson. They had formed a relationship as researchers who were both interested in how culture shapes childhood development and questions of personality and identity. And so in the 1940s when Eric Erickson and Joan Erickson, when she gives birth to their son Neil, there's some complications and she's under sedation there's some complications and she's under sedation for some procedure and the doctors tell Eric that Neil has mongolism. And in 1944, that was a term that was used to describe what we now call Down syndrome. And they had immediately recommended that Eric send Neil away. had immediately recommended that Eric send Neil away. That Neil, the infant, be separated from his mother and immediately sent to an institution.

And so Eric Erickson was unsure of what to do so he called his good friend Margaret Mead to ask for her advice. Margaret Mead to ask for her advice. So as the story goes, she agreed with the doctors and advised that Eric and the Erickson family send Neil away. And the mom is under sedation at this point? That's how the story is recounted by his biographer and presumably Joan is not involved in this decision. And Erickson agrees to allow Neil to be sent away.

And then he went home and told his other children that Neil had died during childbirth. Wow. When I first heard this story, it was, I was shocked. Not because this happened. I was aware that children with Down syndrome were stigmatized and were excluded, and especially in that time period. But I was amazed to learn that Margaret Mead,

this eminent, iconic figure who is the sort of symbol of tolerance and acceptance of cultural diversity, that she had played a role in this banishment of Neil, as you say, the puzzling thing is that she is pushing back against the idea that there are inherent biological traits and characteristics that culturally is dominant. Why would she then say that this infant needs to be sent away? It doesn't seem to make sense. Right. It doesn't. Yeah. And I'm not sure we'll ever know exactly what Margaret Mead was thinking. We can only speculate, right, as to what were the rationales in that time frame. And yeah, there was a number of different ideas circulating. The very term Mongolism was this sort of diagnosis, right? But it kind of marked people, babies with this condition as somehow like so radically other, right? That it was a sort of dehumanizing type of diagnosis and

rhetoric. And then there's this also at the time there is this expectation that children with disabilities are just this tremendous burden that, you know, they can't possibly have a good or satisfactory life and that it will just create tremendous hardship for the family and for the mother in particular. And the trauma of having to raise a child with a disability will just be overwhelming. It'll be too damaging for the other kids. And so this is just better for everyone. So there's these kinds of attitudes, right,

that are dominant at that time period. And presumably this is something that influenced the advice that Meade had given to Erickson. The doctors who advised Eric Erickson to send his newborn son away believe the baby was deficient. Today, we might say the baby had a disability. A more radical view might argue that baby Neil was simply different. When we come back, Tom Pearson lives out the troubled debates of his field in his own life.

You're listening to Hidden Brain. I'm Shankar Vedantam. This is Hidden Brain. I'm Shankar Vedanta. On a cold February morning in 2015, anthropologist Tom Pearson's partner Tiffany gave birth to their second child, Michaela. Tom remembers it as a magical time. We were at the birthing clinic at the hospital, and Tiffany labored there for several hours. And I recall walking through the hospital and accompanying her and supporting her and doing all those things that an expectant father does. And then Tiffany gave birth to Michaela, and Michaela was placed immediately on top of Tiffany's chest so that they could bond. And it was a beautiful, beautiful sight. And just to kind of lean in next to Tiffany and just see her just stroking Michaela's brow.

And it was amazing an amazing experience. It's kind of blurry now, the immediate moments after the birth, but I recall holding Michaela, it was one of the first times, and feeling as if she felt a little light. That was the only thing that came to mind, even though she was, by newborn standards, not undersized at all.

But you know, just kind of a little light, a little, almost a little floppy. But nothing like too exceptional. In the first days after Tom and Tiffany returned home, they adjusted to life with their toddler, Adric, and now baby Michaela. Slowly, they noticed small details about Michaela that differed from Adric. For example, nurses at the hospital had taken prints of Michaela's baby feet. When Tom looked at them, he wondered, is that normal? So when we did the footprint, you know, there's this wide space between Michaela's big toe and The one next to it and I noticed that and thought hmm interesting

And I remember critically dismissing that but then also noticing yeah like something a little different about Michaela's Features right and I began to dwell on her ears. Her ears were a little smaller than Adrix had been. And I asked Tiffany, you know, did the pediatrician say anything when she evaluated Michaela? She said, no, she said she's perfectly healthy. So it's like, you know, okay, it's nothing, right? I'm just, these are just, I'm worrying again.

My anxiety is over, overacting, and I'm dwelling on things that I'm worrying again. My anxiety is over overacting and I'm dwelling on things that I'm making up. And it was only after being home, maybe a day or two after Michaela was born at that point, that like the nagging doubts continued. You know, something just seemed a little bit off. What did you do, Tom? off. What did you do, Tom? I did what probably most people in American society do today. They start searching things on the internet, right?

And I just typed in Down syndrome. Among the top of the list were these not only descriptions, but images of infants with Down syndrome. And I thought, holy, wow, like that kind of looks like Michaela and it was just like this stunning moment of realization that Michaela might have Down syndrome. And so I thought I need to tell Tiffany. I reluctantly walked upstairs. And at that point we were, you know, living in this hundred year old house.

So these beautiful wood stairs that are just sort of like groaning as I walked up the stairs and even stopped halfway up to look out the window and just kind of ponder like, okay, how am I going to bring this up with her? But I got to do this. And so I carry my iPad up the next set of stairs and walk into the room and encounter Tiffany sitting on the bed, nursing Michaela. She's got her computer in her lap and she has tears in her eyes. And so I just, I walked over and looked at her screen

and she had also searched Down syndrome almost simultaneously when I was doing it. The next day, the two parents brought their baby daughter to see a pediatrician to conduct some tests. Tests that would determine if Michaela had Down syndrome. So we had to go for a blood draw and then they had to send the blood sample to a lab. You know, they said it could take up to a week

and I think it was from like Monday to Friday, if I recall. And what was that like waiting for those five days Tom? Yeah, it was extraordinarily stressful and transformative and dislocating psychologically. The pediatrician had, you know, she had said, you know, if I was a betting person, I would bet against Down syndrome. But we went home and I sort of descended into this sort of descended into this sense of tragedy or grieving. I had no experience with Down syndrome, knew very little about it.

And I just had this fear that I don't want this, right? I don't want a child that is quote unquote abnormal. I thought, God, I wish she doesn't have Down syndrome. I hope she doesn't have Down syndrome. I hope she doesn't. And it was a sense of something tragic was happening. I'm wondering at this point, did you spend some time reading up about Down syndrome, what it was, and what the effects would be? That would have been a logical thing to do and a proactive and healthy thing to do, but I didn't. I experienced a sense of dread and tried to distance myself from Michaela and was

just hoping and longing that she wouldn't have Down syndrome. And even found myself pondering Down syndrome. And even found myself pondering maybe if she didn't survive these first days that would just spare us from having to deal with this. So there was this sort of like indirect so-called death wish, right? I mean, it's not like a conscious over thing, but like, yeah, like I didn't want her to survive, right? Just to spare us from having to deal with this trauma, this tragedy. I think that really illustrated just the depth of uncertainty and the sense of like dislocation I was was experiencing in that moment.

After several long days the pediatrician called Tom, Tiffany, and Michaela into our office to review the test results. And then she just looked at us and said I'm sorry. That was a delivery of the diagnosis. And I just experienced this rush of grief as if someone had just died. Like that was the feeling that came over me. Tom suddenly felt like he needed air. How could this be happening to him?

Why was this happening to him? So while we were still at the doctor's office, Tiffany was waiting for something with Michaela. And I said, I need to go for a walk. And so I went for a walk around the building. And then I went back to my car and was sitting there with a door open. And it's a sunny day in March in Wisconsin.

There's still snow on the ground, but the warmth of the sun. And I remember sitting there and just feeling this like impulse, like just turn on the car and just go, just drive, just leave. Tom did not drive away. He and Tiffany and Michaela left together. We started driving together to nowhere in particular, but just to go for a drive and to talk and to process. And yeah, just wondering like, what does this mean? Like, will Michaela ever ride a bike?

That was one of the first things that I thought about. Will she get married? You know, is she gonna live on her own? Like, so all these things that we take for granted, right, as these kind of benchmarks of growing up and achieving something, like we were beginning to like, ponder like, what does this mean for Michaela? All of us look for sources of comfort and insight

when we go through hard times. For Tom, that came from family, from Tiffany, from his brother with whom he had always been close, but it also came from his field of study. He decided to start learning about Down syndrome through the perspective of anthropology. The first tool of the anthropologist is observation, to notice the unusual,

but to also see everyday things with curiosity and freshness. Tom started by observing himself. How had he responded to Michaela's diagnosis? Why had he responded that way? I had experienced grief and some people around me had said they were sorry, right? They had offered condolences, but that didn't fit. I mean, our child didn't die. And I immediately began to try to detach myself. And then also, I think there's a sort of dehumanizing of my own child in that case, right? And one of the things that I began to then think about

after Michaela came into our lives and as we're settling into just the routines of parenting two kids and a child with Down syndrome and coming to terms with that is then wanting to understand like why is it that I sort of marked her as so radically different as to experience that deep sense of rejection and what's going on in the culture around me that would inform that experience and what has gone on historically, right, that has shaped how we think about and encounter and experience Down syndrome in the present.

Tom realized that one component of his reaction was psychological. His grief was not about Michaela. It was a grief about his own failed expectations. So all the assumptions that I had had about having a child and having a quote unquote perfect child and a certain type of family and what does it mean to grow up and what does it mean to achieve something and be successful? That was all being scrambled.

That was all being unsettled. And this previously imagined future that is shaped by all these taken for granted beliefs and cultural ideas about what it means to do these things and have a good life, that had all been unmoored and unsettled. And so that sense of loss, right, I've come to see as mourning the loss of this imagined future. In addition to that, then wanting to understand like, why is it that I experienced a diagnosis in this way? Tom noticed that what he was wrestling with was not merely psychological. It involved a long history. He was confronting the same questions that had divided anthropologists in the 19th

and 20th centuries. Was a baby like Michaela deficient or just different? My own assumptions were shaped by the existing prejudices and bias that circulates in our society that is so deeply embedded that we don't even recognize it, right? This assumption about what is normal or abnormal, what is desirable or undesirable, how that shapes and informs our hopes and dreams for ourselves and for our children and even someone like trained in a field like anthropology, I still found myself in retrospect, right, influenced by these type of prejudices and expectations. During his research, Tom came across the story

of how Margaret Mead recommended to Eric Erickson that he reject his son because the baby had Down syndrome. One aspect of the affair that struck Tom immediately, the terms for the condition itself, Mongolism and Mongolian idiocy spoke volumes. I asked him to explain what he'd found. Yeah, that's a fascinating history. The series of features or characteristics that we often associate with Down syndrome things like the shape of the eye perhaps or neck shape shorter stature

You know, there are certain characteristics that we tend to visibly associate with Down syndrome Today we know that Down syndrome is a chromosomal condition and there is a an extra copy of the is a chromosomal condition and there is an extra copy of the 21st chromosome. And it's associated with certain characteristics, right, that many people can visibly probably recognize. And these characteristics were first described by John Langdon Downe in the 19th century. He was a supervisor of an institution where people with disabilities were sent. Being a supervisor of an institution where people with disabilities were sent. Being a supervisor of this institution, he described this pattern and he didn't know how to make sense of it. And so he kind of viewed it through a racialized lens stemming from the sort

of so-called Asian eyes. And he compared these features to features in the 19th century were associated with the so-called Mongol race. And so he speculated that these residents of his institution, who were born to white European families, but how can they have these so-called Mongolian characteristics, that it must be some sort of like reversion to this prior or more primitive evolutionary state that occurred in the womb. Wow. So he's kind of viewing this,

interpreting it through the lens of ideas about human evolution, these flawed problematic notions of race, as well as viewing it as something that's rigid and innate. So that's where the term Mongolism then comes from. This is, you know, in the 1860s, 1870s, so then into well into the 1940s, people are still using this terminology that is heavily racialized. I mean, I hadn't really understood or realized the medical understanding of Down syndrome, how it intersected with racial classifications. It really is, it's sort of striking how far back that goes.

One of the other things you talk about is this idea of what's called the Simeon crease. What is the Simeon crease? Describe that for me, Tom. What was the thinking there? Yeah. I first encountered this term in the doctor's office prior to when Michaela was diagnosed, but when we were getting the blood test to count her chromosomes to determine whether or not she had Down syndrome. So the pediatrician made a comment about Michaela not having a simian crease on her palm. And I looked down at my palm and I had no idea what that meant.

So yeah, I would later learn that this refers to some people with Down syndrome have a noticeable single crease on their palm. The term simian, right, is a reference to non-human primates and In the early 20th century in the context of the eugenics movement there is speculation about how do we interpret Mongolism and does this condition represent this sort of like or primitive evolutionary state and and yeah that notion of sim-increase and reinforce this association

of Down syndrome of what was then called mongolism with something that is less than human. So you're reading about these things, you're reading about the history of anthropology, the history of Down syndrome. You also are the parent of a child with Down syndrome now. And I'm wondering, are you seeing things in your child's life that reflect this deep history of how we have thought about the disorder? Yeah, there's a long history, not only of sort of devaluing

and dehumanizing people with Down syndrome through terminology such as Mongolism, but also through that impulse to institutionalize, right? And institutions that would house children with disabilities or other conditions or people with mental illness like have a long and troubled history. But these reflect that the history of wanting to create like this division between, you know, normal and abnormal, right? And yeah, a lot has changed, right? I mean this emergence of a disability rights movement, you know, the Americans with Disabilities Act has, you know, the Americans with disabilities act has, you know, enabled a world in which people like Michaela are included in ways that previous generations weren't.

Even though I like grapple with those uncertainties and that sense of rejection before we knew, you know, Michaela definitively had Down syndrome and there was a sort of period of coming to terms with it, there was never a doubt that we were going to bring her home and care for her. But at the same time, right, like there is still, I think, a lot of ways in which this history of dehumanizing and devaluing people with Down syndrome, people with disabilities, that continues to inform how we experience and perceive disability in the present. And just, you know, my own own experience when Michaela was diagnosed,

and this is sort of like reaction of some people expressing condolences, right? Saying they're sorry, as if something tragic had happened, references to a semi-increase, right? Like there's a baggage with that term, there's a legacy to that. The ways in which this subtly marks someone as different, as outside what is considered normal or desirable.

And there's a subtle sort of devaluing that occurs. So one of the things that you are fascinated by, and I think is a fascinating question is when is something a difference and when is something a disability? And I think we've been circling around this question for a bit now of trying to understand are disabilities just differences?

Are differences disabilities? And of course, perhaps these are just words, but the words have meaning and they have power because differences are things that we accept that we say, well, people are have power because differences are things that we accept, that we say, well, people are different. Disabilities are things that we should confront, things that we should treat. Have you thought about whether you think of Down syndrome

as being difference or disability? Yeah, definitely. I am not someone who identifies as a person with a disability, but I now am the parent of a child who is disabled. What does that mean? You know, she physically has no health impairments or issues, she engages with language differently,

and she learns differently, and she does not learn as quickly as her peers do, and that's obvious, right? And so to what extent are these impairments or are they differences, right? And it depends on the context. The social conditions that we inhabit are what shape whether or not we are included

or accommodated or experience impairment. Many of the barriers and limitations that people with disabilities or health impairments encounter are created by society. They're created by the lack of resources, by the stigma, by the prejudice that continues to exist, by the lack of accommodations, right? So there are social origins to the impairments that people experience. I think it's important to recognize that something like Down syndrome,

which is a chromosomal condition, but it's also part of the human experience. This is not caused specifically by anything. There's not an environmental cause to it. It just happens and it has always happened and it happens across the world, right? So this is part of the human story. It's part of the fabric of human diversity. At the same time, right, we can't just reduce it down to another form of difference. In today's world, even though so much has changed, to parent a child with disability,

to parent a child with Down syndrome, it's also find yourself as an advocate, as an activist in ways that you never imagined or intended, because you're now navigating a world where you are encountering often unexpectedly barriers and perceptions and prejudices that still need to be overcome. Hmm, hmm. You know, and I suppose some people might say,

look, there really are these things that are disabilities. And I'd actually want to press you on this question, but as you were talking just now, I was just reflecting, you know, I'm very short-sighted. And if I were to lose my glasses or if the technology to make glasses didn't exist, I probably would consider myself to be disabled at that point. I really wouldn't be able to function. I'd barely be able to make it down the stairs, let alone get out on the street and drive around. But the fact that the technology to make contact lenses and glasses is so ubiquitous, and I

wake up in the morning and I put on my glasses, and then I don't think about the fact that I'm short-sighted, and nobody else thinks about it at all, because there's a perfect solution for the short-sightedness. And suddenly the thing that used to be seen as a disability is now seen as a minor annoyance, nothing more than that. And in some ways, it to me sort of reflects this idea that things that we think of as being disabilities in some ways are always a construction between the physical experience of the disability and the social world that lives around that disability. Yeah. And there are all sorts of ways

in which we accommodate impairments, right? We come up with ways to deal with that and life goes on. And if we live long enough, we're gonna age and our bodies are gonna change and we're gonna have fewer abilities than we did as young people. I mean, these are inherent truisms, right? Of the human experience.

So on some level disability is inherent to what it means to be human. And we can we can deal with it, we can accommodate it, we can make the best of it. The question comes into play of like why do certain ways of being and living get devalued, right, and marginalized and viewed as not worth living or become the subject or target of so much stigma and prejudice that that in itself becomes a further disablement for people having to deal with that, you know, that bias.

with that, you know, that bias. Despite what she recommended to Eric Erickson, Margaret Mead's work changed the way we think about differences and disabilities. Differences did not automatically imply deficiencies. Over time, and as the culture changed around her, Margaret Mead began to advocate for greater disability rights. She came to critique the kinds of institutions to which she damned Neil Erickson. For the kind of society that will value each individual, save more blind people and more deaf people.

And probably when we do this, we will also be saving kinds of genius that we've never been able to save before. It's perfectly possible that you have various sorts of linkages, genetic linkages, that mean that certain kinds of great skills, great imaginative abilities, have perished right through the generations because we weren't able to save a certain kind of person. So I think we are going to have to widen the range of the people whom we treat as human and whom we build our society so they can live in it, so the deaf can live in it and the blind can live in it and people with special disabilities.

At the same time we may hope to have a greater range of human, greater human variability and therefore greater ability also. After Eric Erickson sent baby Neil away to an institution, his wife Joan reportedly felt devastated by the decision. They rarely discussed Neil. Neil died at age 21 while still living in an institution. Eric and Joan were on vacation in Italy at the time and did not return for the funeral. Instead, according to a memoir by their daughter Sue, they delegated the task to their children, who knew nothing of the sibling they buried. When we come back, Tom wrestles with his new understanding of Down syndrome as he and Tiffany

debate whether to have a third child. You're listening to Hidden Brain, I'm Shankar Vedantam. When his daughter was born diagnosed with Down syndrome, the anthropologist Tom Pearson's own life became a case study of debates that have roiled anthropology for decades. Within weeks of Michaela's birth, Tom and his wife Tiffany encountered a question from friends and family. When are you going to have another child? And it was a little bit strange because when someone has had their second child,

the last thing you expect is people be asking you when you're going to have your next child. And it was almost as if like, because something was quote unquote wrong with Michaela that when are we going to try again to have the right kid? And I remember talking with Tiffany and I just made some comment about, yeah, if, if you were ever to get pregnant again, we would need to have prenatal testing and Tiffany said, why is that?

And without even thinking about it, I just said, oh, so we would know whether or not to abort or terminate the pregnancy. And there was this pause. And I looked up and Tiffany had tears in her eyes. And Michaela is sitting in the baby carrier next to her. And Tiffany says, what are you trying to say? That you don't want Michaela? And yeah, I support the right of women to choose whether or not to continue a pregnancy, right? I support abortion rights and reproductive rights, but I had just assumed, right, that like the thing to do

was to prenatally test for Down syndrome. And why is that? A couple of years later, Tom and Tiffany did decide to have another child. We faced that question then from doctors, like, aren't you going to get prenatal testing to see if the unborn baby has Down syndrome, has an extra chromosome? And so we talked about it, we pondered it, we met with an obstetrician. if the unborn baby has Down syndrome, has an extra chromosome. And so we talked about it, we pondered it, we met with an obstetrician, like what would this information tell us other than that counting its chromosomes?

Like, it's not going to help us in terms of like the potential like health of this unborn child. It's just all it is is a chromosome count. We decided, I mean, that we didn't need that information, you know, that there was no reason why we didn't want to continue the pregnancy and terminating a pregnancy just because of something like Down syndrome, that no longer felt ethically justifiable in ways that I assume that it was, you know, just a couple of years prior. And so, yeah, so we declined to have any sort of

genetic testing and then our third child Zora, you know, was born, she does not have Down syndrome, but it wasn't something that we feared at that point anymore. Do you still think of Michaela as having Down syndrome? Is that something that even occurs to you anymore? Does it factor into the way you think about her? Yeah, we don't, I mean, it's interesting

because when she was first born and we were grappling with the diagnosis, I constantly thought about Down syndrome. It was just constantly on my mind. And then at some point it faded. And it's not the lens through which I interact with Michaela or view her. Of course she has Down syndrome,

but it's not something that I'm consciously thinking about all the time. And I don't view her as a kid with Down syndrome and she's just Michaela and she's our daughter and she's beautiful and mischievous and clever and curious and she is a wonderful sibling and daughter and cousin and friend and cares deeply about everyone around her. You tell a very charming story in the book about your three children on the playground

playing with other kids and sort of talking about one another. And it's a wonderful story because it illustrates in some ways the fact that some of the ways in which adults think about disabilities or differences are not quite the way that children think about these things. And in some ways you actually, we are taught and we learn how to think about disabilities in a certain way. Tell me that story, Tom. Yeah, so it was a few years back,

and like I've done many times, I rode my bike to the playground with Adric, Michaela, and Zora, and there were some other children there, and so they all went to play and climb around on the playground equipment. And Adric, the oldest, began to play with and interact with another child about his age. And suddenly he began to not only introduce himself, but talk about his siblings and kind of list features or characteristics.

He said, my name is Adric. My talent is running and jumping. And I have no idea why he decided to list that talent. But you know, they're playing on this playground and that's what they're doing. They're running and jumping and climbing. And then he looks down and he says, that's Zora, my sister. Adric says, her talent is fighting. And that also made me laugh and then I was just wondering like hey what is Adric gonna say about Michaela who's there playing as well and the child that they were playing with had kind of noticed Michaela right because you

know at that point I think she's six years old or so talked a little differently you know she definitely keeps up with Adric and Zora on the playground and climbs and does everything that they do. And she rides bike, but it's not as fast, not as high, not as long sort of thing. So I'm watching and observing this. And then Adric is looking at Michaela and he says, that's Michaela.

We haven't figured out her talent yet. He says, that's Michaela. We haven't figured out her talent yet. And that was really amazing to me that in addition to other kids, I often wonder how do Michaela's siblings view her because they interact with her all the time and she's just Michaela. And now and then we talk about Down syndrome with them

and we don't want to ignore that she has Down syndrome and that there are things that are a little bit different and we want to equip them with the language and ability to talk about that. And especially as they get older and are in settings at school and other places to be able to navigate life as a sibling of someone with Down syndrome. But that was really telling that, you know, he didn't view her through the lens of deficiency. Even though he's listing these other physical abilities of himself and Zora, he didn't view her through that lens of deficiency or disability or Down syndrome. He just, she's just Michaela and we haven't figured out her talent yet, but we will.

And that said a lot to me. Tom Pearson is an anthropologist at the University of Wisconsin-Stout. He's the author of An Ordinary Future, Margaret Mead, The Problem of Disability, and A Child Born Different. Tom, thank you for joining me today on Hidden Brain. Thank you very much, I really enjoyed this.

Hidden Brain is produced by Hidden Brain Media. Our audio production team includes Annie Murphy-Paul, Kristen Wong, Laura Correll, Ryan Katz, Autumn Barnes, Andrew Chadwick, and Nick Woodbury. Tara Boyle is our executive producer. I'm Hidden Brains executive editor. We end today's show with a story from our sister podcast, My Unsung Hero. It's brought to you by T-Mobile for Business. For as long as she can remember,

Leela Hoffa has struggled to express herself in writing. She says in her first years of school, her teachers didn't notice that anything was wrong. That changed when she met her third grade teacher, Valerie Holmgren, who discovered that Leela had a learning disability called dysgraphia. So Leela's teachers and her parents had a meeting to figure out what to do next. This was honestly quite terrifying because I was just a small child and all these people

were there gathered around me talking about me and it was pretty scary. We were all sitting around a long table and Mrs. Hohmogren pulled out a computer and opened it to Google Docs and said that there was this cool thing that she wanted to show me. So she showed me how to open speech to text and I did not quite understand what this was at first. Then she showed me that you talk to the computer and it writes down what you're saying. This was just an overwhelming moment for me because I realized all of the the stories and the ideas that I had stuck in my head, there was an easy way to get them down onto paper and to be able to share them with the world. And I just threw my head back and said I could write a thousand stories. It was just an

amazing moment and everybody seemed to be thinking, like, yes, this is going to work. Like, we've made a difference. I still use speech to text daily. I use it to send messages. I use it to write essays in class. I use it to type up emails. And I wrote a story called The Girl Who Couldn't Stop Reading, aka me. So thank you for noticing my potential and noticing that there was so much more to me and that it wasn't just the basic struggle that I was having.

Not only did you notice the handwriting and help me get better at that, but you knew that there was so much inside my head that needed to get out. Leila Hoffa lives in Flagstaff, Arizona. Today's My Unsung Hero story was brought to you by T-Mobile for Business. You can find more of these stories on the My Unsung Hero podcast or at myunsunghero.org. If you liked today's episode, please consider becoming a supporter of Hidden Brain.

We build episodes like this for you, and they take an extraordinary amount of effort and research and time. If you find our work valuable to you, please do your part to keep it going. Support us by becoming a subscriber to our program at apple.co. slash hiddenbrain, or by going to support.hiddenbrain.org. Again, that's support.hiddenbrain.org. Again, that's support.hiddenbrain.org. I'm Shankar Vedantam. See you soon.