What’s Normal? The Anthropology of Disability with Tom Pearson, Ph.D.

What does it mean to be human? Who counts as a human being and why? Anthropologist Tom Pearson has been asking these questions for a living for a long time, and then his daughter was born and diagnosed with Down syndrome, prompting him to ask the questions all over again in his book An Ordinary Future. 

Amy Julia and Tom discuss:

• Normalcy, disability, and the human experience
• Cultural perceptions of disability and the historical context of eugenics and institutionalization 
• How prenatal testing influences societal views of disability
• Interdependence and its relationship to the human experience
• The ways disability is a source of innovation and community, not just an inevitability

FREE RESOURCE: 10 Ways to Move Toward a Good Future {especially for families with disability}

Guest Bio:

Tom Pearson is a cultural anthropologist with wide-ranging interests in the fields of environmental justice and disability studies. He teaches at the University of Wisconsin-Stout, where he also chairs the social science department. His writing has appeared in numerous scholarly journals and other public outlets. The birth of his daughter Michaela and her diagnosis with Down syndrome thrust him into an unfamiliar world of disability and difference. His book An Ordinary Future: Margaret Mead, the Problem of Disability, and a Child Born Different examines this experience in relation to Margaret Mead's path to disability rights activism. It confronts the dominant ideas, disturbing contradictions, and dramatic transformations that have shaped our perspectives on disability over the last century.

Connect Online:

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On the Podcast:

• Washington Post: A mystery illness stole their kids’ personalities. These moms fought for answers.
• An Ordinary Future: Margaret Mead, the Problem of Disability, and a Child Born Different by Thomas Pearson

TRANSCRIPT: amyjuliabecker.com/tom-pearson/

YouTube Channel: video with closed captions

Let’s Reimagine the Good Life together. Find out more at amyjuliabecker.com.

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Thanks for listening!

Chapters

• 0:00 Exploring Normalcy and Disability Through Anthropology
• 1:46 The Impact of Disability on Identity
• 7:46 Understanding Anthropology and Its Relevance
• 10:37 Cultural Relativism and the Human Experience
• 18:36 Margaret Mead and the History of Disability
• 29:09 The Ongoing Struggle for Inclusion
• 33:06 The Intersection of Disability, Race, and Prenatal Testing
• 39:29 Reimagining the Good Life with Disability

Transcript

Note: This transcript is autogenerated using speech recognition software and does contain errors. Please check the corresponding audio before quoting in print.

Amy Julia Becker (00:05)
What does it mean to be human? Who counts as a human being?

Anthropologist Tom Pearson has been asking these questions for a living for a long time. And then his daughter was born and prompted him to ask those questions all over again. I'm Amy Julia Becker, and this is Reimagining the Good Life, a podcast about challenging the assumptions about what makes life good, proclaiming the inherent belovedness of every human being, and envisioning a world of belonging where everyone matters.

Tom Pearson is a cultural anthropologist. He teaches at the University of Wisconsin Stout, and he also chairs the social science department then. You're gonna hear all about the birth of his daughter, Michaela, and her diagnosis with Down syndrome, and his book, An Ordinary Future, Margaret Mead, The Problem of Disability, and A Child Born Different. I'm really excited for you to hear our conversation today, but before I get to that, I do also wanna let you know I have a free resource available.

10 ways to move towards a good future, especially for families with disability. You can go to amyjuliabecker .com slash future. I think maybe that's a backslash. Amyjuliabecker .com backslash future, or just click the link in the show notes. In this free download, I shared 10 ways to move toward a good future for any family affected by disability.

Again, I am so grateful for Dr. Pearson's work and for the chance to talk with him as both a father and an anthropologist. I hope you'll enjoy this conversation as much as I did.

Amy Julia (01:46)
Well, I am sitting here today with Professor Tom Pearson. He is the author of a book, a new book, An Ordinary Future. Dr. Pearson, welcome to the show.

Tom Pearson (01:57)
Thank you, it's really great to be here.

Amy Julia (01:59)
So we're here to talk about your book and I'll give a little intro of my own, which is that it's a mix of memoir and an investigation into the field of anthropology, which is your field as it pertains to intellectual disability. And I thought maybe a way we could start and get into the story that is told through these pages is with the title of the book. So I'm wondering if you could just speak to this title, An Ordinary Future

Tom Pearson (02:23)
Mm -hmm.

Amy Julia (02:27)
as a way of maybe introducing listeners to who you are and to your story.

Tom Pearson (02:34)
Yeah, I feel like you've started with a difficult question. No, that's okay. Yeah, I mean, the title is a play off of, I think, a couple different themes. You know, an ordinary future. So the idea of ordinary is just the book is it's kind of probing this idea of normalcy and how we define normalcy and normality, who belongs and who doesn't, how we create

Amy Julia (02:37)
Sorry.

huh.

Tom Pearson (03:04)
boundaries around these categories and the ways in which notions of disability inform our understandings of normalcy. And becoming the parent of a child with Down syndrome, which was a very transformative moment in my life, really pushed me to question my own assumptions about normalcy. And so in part the title is I think,

I'm referencing that. And then an ordinary future. So one of the other experiences that I had becoming a parent of a child with Down syndrome was just the ways in which that experience not only pushed me to question my assumptions about normalcy, but my expectations for the future and what it means to live a good life and all these kind of taken for granted assumptions I had about the type of

Amy Julia (03:56)
Yeah.

Tom Pearson (04:03)
family I envision myself having. And so, yeah, I just think that experience, it really unsettled. And there was this moment of rupture for me, right? And it just challenged these beliefs and assumptions and expectations that I didn't really recognize at that moment, right?

Amy Julia (04:27)
Yes, I mean, I so relate and I'm sure listeners here will know that when I was given a postnatal, but just two hours after Penny was born, diagnosis of Down syndrome, I realized that I had walked into the hospital with expectations I didn't even know I had. And that was jarring in and of itself to think that I had gone in with kind of a sense of, you know,

we're going to find out who this lovely child is. And then I got this diagnosis and thought, except not that, that is not a part of the plan. And, and again, similarly, a sense of rupture that has since become a sense of tremendous possibility and exploration. And I know the same is true for you, but I also don't want to hold back from being real clear on how much, and I'm sure this is true in many aspects of our life, but especially as parents, we can deceive ourselves into thinking that we,

Tom Pearson (05:09)
Yeah.

Amy Julia (05:22)
really are kind of holding our hands open about who our children are going to be. And then we realized that we've had like our fists very tightly closed around who they are supposed to be. And I think in some ways it felt like a gift to me to have a child who forced me to recognize that. I wonder whether with our other kids, I might have done more forcing them to be who I thought they were supposed to be if Penny hadn't done some of that disrupting for us. I don't know.

Tom Pearson (05:32)
Mm -hmm.

Yeah, yeah. So when I, when I describe it as a rupture or something transformative, that's not inherently negative, right? You know, when my daughter Michaela was born, nine years ago, she, you know, we didn't, we didn't expect a Down syndrome diagnosis. So similar to you was in the days after her birth that she was diagnosed with Down syndrome. And, I knew very little about Down syndrome and when

Amy Julia (06:06)
I'm sorry.

Tom Pearson (06:19)
we first received the diagnosis, it was a scary moment. I responded with fear and this just sort of impulse to reject something that I didn't understand. And I thought that it would be this just life -changing negative thing, right? But coming to terms with that, questioning my own prejudice and assumptions about the world, coming to embrace Michaela, you know, that...

Amy Julia (06:34)
Mm -hmm.

Tom Pearson (06:47)
was transformative in the sense that, you know, a challenge like why did I see the world in a certain way, right? Why did I initially react to her diagnosis as something dreadful, right? Or something to be afraid of. And so it was that process of questioning my own assumptions and beliefs and wanting to understand the broader culture and history that informed that, which then has led me to kind of view the world in a different way. And so that's a very positive thing, right?

Amy Julia (07:01)
Yeah.

Tom Pearson (07:18)
So the gift that you describe, right, is seeing the world with a new openness, a new perspective that I didn't recognize before.

Amy Julia (07:27)
Well, and so this, I think it's a little bit into my next question, which is, if I back up a little bit, the other piece of your story is that you are an anthropologist by training. And so I thought maybe we could get some anthropology 101 in terms of just what does that actually mean? What are the types of questions that anthropologists are trained to ask? And why does anthropology matter? Like, why is it a field of study that you're interested in, but also that the rest of us are wanting to pay attention to? So can you give us a little of that backstory?

Tom Pearson (07:55)
Yeah, yeah. And that's, that story is an important thread of the book. And anthropology is a, it's a humanistic, scientific field of study. It does a lot of things these days, right? But when you kind of reduce it down to its bare elements, anthropology is a study of what it means to be human. The discipline of anthropology, it really originated in the 1800s. And.

Amy Julia (08:17)
Mm -hmm.

Tom Pearson (08:25)
At that point, scholars who identified as anthropologists, they were trying to understand the origin of humankind, how humans are different from other species, whether or not all the different categories of people and diversity that we recognize today can even be included in that same group of humans, right?

Amy Julia (08:46)
Hmm. Yeah.

Tom Pearson (08:49)
And so anthropologists at that time, they looked at that question of what it means to be human from different perspectives, from a evolutionary or biological perspective, but also from the perspective of culture and the ways in which are the ability to create systems of meaning, the ability to create systems of values and beliefs that we call culture that makes us human. Over the decades, the discipline of anthropology has splintered like a lot of fields of study.

My subfield that I identify with is known as cultural anthropology, which tends to focus on contemporary human behavior. But at the same time, like most anthropologists, I still identify with the history of my discipline and the ways in which we kind of view the world through this larger holistic perspective and this shared mission of trying to just understand the human experience.

Amy Julia (09:46)
Yeah, I was struck. So this is kind of pulling together the things you've told us so far. This is a quotation from early on in your book. You said, during that week, that period from birth to diagnosis, the foundation of my worldview, a belief system informed by my training in cultural anthropology began to shift under my feet. Here I was an expert in a discipline that studies and celebrates the diversity of humankind, struggling to come to terms with a child born different.

And I wanted to just ask you to speak a little bit to this because I think it's so interesting. You're a person who was just fundamentally asking, what does it mean to be human before Michaela was born and diagnosed with Down syndrome? And then she was born and you had to ask all over again, what does it mean to be human? And I'm curious if you could just speak to how that question changed or maybe how your answer changed as a result of her birth

and the work you've done since her birth, to even think about that through the lens of cultural anthropology.

Tom Pearson (10:47)
Yeah. An idea or concept that is at the core of my discipline is this notion of cultural relativism, which is a, it's basically a, an idea that, it asks people to suspend their judgment of things that they don't understand. and to try to understand difference in its own context. And so early anthropologists, they developed this

Amy Julia (11:08)
Mm.

Tom Pearson (11:15)
this principle or this idea of cultural relativism, you know, in this period when anthropologists were often studying non -Western peoples and cultures, so -called primitive cultures that were very different from so -called Western civilization or Western society, right? And in the context of the 1800s and the early 1900s, many people viewed non -white, non -Western cultures,

not only as different, but as inferior or as, you know, in negative terms. And so early anthropologists, they developed this idea of cultural relativism to say, okay, hold on. It doesn't make any sense to try to rank or to judge other cultures as better or worse, right? We need to try to understand them in their own context. What does it mean to be a member of that culture from that perspective, right? And there's something valuable and inherently valuable

Amy Julia (11:50)
Yeah.

Tom Pearson (12:15)
in and of itself. And so this idea of cultural relativism is really at the core of an anthropological perspective, right? That this idea of wanting to not only tolerate, but to value and celebrate cultural difference and diversity, all the diversity that just characterizes the human experience and wanting to understand what it means on its own terms, right? And so this is something that...

I was kind of trained to think in these terms as an anthropologist and an idea that I teach about and very much I'm committed to. And so when my daughter Michaela was born and I was grappling with all of these unexpected reactions to her diagnosis of Down syndrome and feeling this impulse to deny her humanity and kind of viewing it through this lens as something negative and

Amy Julia (13:05)
Mm.

Tom Pearson (13:10)
you know, as something to grieve, right, and mourn. You know, I began to question like, why is it that even though I was trained in this discipline that emphasizes understanding and celebrating difference, why was it that I was struggling to come to terms with, you know, a child that was born different, right, my own daughter? And, and yeah, so this really pushed me to think about the ways in which we often ignore disability

Amy Julia (13:31)
Yeah.

Tom Pearson (13:39)
as a category of difference, right? And all the different cultural ideas that shape how it is that we view normality and disability and that historically and in the present the ways in which we continue to devalue and dehumanize people with disabilities or different disabling conditions.

Amy Julia (13:54)
I'm sorry.

Yeah, I'm trying to think of what you're prompting me to think about is the difference between saying, wait a second, this is a, and I think you do a good job of this. It seems as though it's the cultural lens that you at least, and I inhabited before having our daughters in our life was one that didn't say disability is a form of human difference, but said disability is a form of human

defect, like that there's like, and so that shift is like actually a, it's an anthropological shift, right? It's a like, how, what does it mean for you to be human shift? I was really struck in you to write about this a couple of different places, but you're, this is, you write in one place and we'll talk about Margaret Mead in a second, but, and this is in the context of Margaret Mead, but you just write, there's something fundamentally human about disability.

Tom Pearson (14:28)
Exactly.

Amy Julia (14:56)
So it's not even, I mean, there is a step towards like, wait, what if this is difference rather than defect? Like there's that, but then beyond that, this sense of like, actually, what if there's something fundamental to our common humanity that actually is perhaps exposed or made clear in the experience of disability? Is that reading you correctly? Okay.

Tom Pearson (15:09)
Exactly.

Yeah, exactly. I mean, I had grown up in a cultural context that tends to stigmatize disability and ignore it, right? But like you're saying, I mean, disability is at the core of what it means to be human. And so one of the kind of threads of my book is to try to reflect on and explore some of the ways in which I had encountered disability in my life, even prior to having a daughter with Down syndrome,

Amy Julia (15:45)
Mm -hmm.

Tom Pearson (15:46)
whether that's family members or myself struggling with disabling mental health conditions, or just through the process of aging and having grandparents who used a wheelchair or used a hearing aid. And these are impairments that are very common, right? And...

Amy Julia (15:53)
Hmm.

Tom Pearson (16:12)
All of us, if we are lucky enough to live a long life, we will experience the aging process and our bodies will change. And so just from that perspective, what we think of as disability, right? That's an inevitable and natural part of the human experience. And that's something that I had ignored and really had failed to acknowledge and appreciate.

Amy Julia (16:41)
Yeah, my husband, I think early on in Penny's life, it's become so common of something we say in our family that I can't remember when, but talked about disability as a magnifying glass and the ways in which we were able to see more clearly both the limitations and even brokenness inherent within all of us as humans, as well as the real beauty and giftedness and possibility inherent within us. And that has been a helpful frame for me. And...

Tom Pearson (17:02)
Mm -hmm.

Amy Julia (17:11)
One of the things I really appreciated about your book was that sense of going beyond difference, which I think is an important step, right? But to say there's a value inherent within not just every human life, but the lives of people who are born with disabilities. And I feel like that, well, we'll go back to that, because I have another quotation, but I'm going to read that later that I just really loved. But the piece I want to weave in here,

Tom Pearson (17:29)
Mm -hmm.

Amy Julia (17:41)
is the history that you tell. You have really what I would say are super important and somewhat devastating examples of institutionalization and eugenics and just a broad societal and structural bias towards people with intellectual disabilities throughout the Western world. I'm not actually sure that that's different in other cultures. I don't want to make a broad statement,

but I think I can broadly say that about the Western world. And I'm wondering if you could, within that, you kind of localized that through this story of Margaret Mead and Erik Erickson, who are two pioneers in the field of anthropology. So could you just explain this story between Margaret Mead and Erik Erickson, but then maybe also like bring or zoom out a little bit in terms of that history of institutionalization and eugenics?

Tom Pearson (18:11)
Mm -hmm.

Yeah. Yeah. So a particular story about Margaret Mead became kind of a jumping off point for the book. Margaret Mead is a very iconic modern anthropologist for any listeners who are unfamiliar with her. You know, she was born in the early 1900s, died I think in 1978, and she really came to represent a new

kind of version of anthropology that embodied this idea of cultural relativism that I was describing. Margaret Mead was unusual in her, just how famous she became as an intellectual. She was widely known outside of the field of anthropology and she was this really prominent public figure and she spoke widely

on a range of topics and, you know, a a range of venues. venues, but yeah, she's remembered today, right, in anthropology and outside of anthropology as, as representing this, this idea of just celebrating difference in all its forms. And so, there's this, you know, story I encountered that I was not aware of until, several years ago

Amy Julia (19:50)
Mm -hmm.

Mm.

Tom Pearson (19:59)
of Margaret Mead and her good friend, Erik Erickson. And Erik Erickson is a psychologist. He was another 20th century figure, a prominent public intellectual who became very well known for his work on questions of identity and childhood development. Very pioneering in the field of psychoanalysis and psychology. And he was close friends with Margaret Mead in the 1930s and 1940s

when Erik Erickson's wife, was pregnant with, if I recall exactly, their fourth child, Neil, he was born and shortly after Neil was born, the doctors had diagnosed him with, with mongolism. And in 1944, this was the terminology that they used to describe, babies who have Down syndrome. And so the doctors,

immediately advised Erickson to institutionalize Neil to send him away. So, Erick Erickson, not knowing exactly what to do, he called his good friend, Margaret Mead, for advice. She was also widely known for her work on the topic of families and childbearing and childhood development. She was viewed as this very progressive figure in the 1940s. So, she reached out to him for advice and...

Surprisingly, she agreed with the doctors and advised Erik Erickson to institutionalize Neil. So part of what I wanted to do in the book was to unpack that story, to put it in its context of the early 20th century, to try to understand where is it that this term Mongolism came from,

how it kind of furthered this devaluing and dehumanizing of people with Down syndrome, how this was connected to the eugenics movement in the early 20th century, the ways in which it was used to rationalize the institutionalization of people with intellectual disabilities, the kind of marginalizing, right, that that represented, the sending people away in the sense of social marginalization.

Amy Julia (22:02)
Mm -hmm.

Tom Pearson (22:26)
But then also the ways in which this was all challenged over the course of the 1950s and 1960s, which was also something that was represented by Margaret Mead's own changing views about disability.

Amy Julia (22:40)
Yeah, and within that, I was so fascinated because she seemed to very much change her views and yet also never revisit the advice that she had given her friend. Is that true? Yeah.

Tom Pearson (22:52)
as far as I'm aware, right? Because there's this story, this anecdote about Margaret Mead's role in the institutionalization of Neil Erickson, Erick Erickson's son. And there's not a lot else other than the kind of recounting of this in a biography about Erick Erickson and then in a couple other sources. And so, you know, over the course of her career, Mead,

Amy Julia (23:17)
Mm -hmm.

Tom Pearson (23:22)
did give presentations about intellectual disability. She did speak to, in the 1950s, the context of the 1950s, this was the emergence of parent advocacy groups, other groups that were challenging institutions and were advocating for the inclusion of people with disabilities in society. And in different venues, Margaret Mead did come to also call for...

to challenge some of these things that were happening, right? And to embrace a very different view of Down syndrome and disability. So she became an advocate for disability rights by the end of her life.

Amy Julia (24:06)
Right, yeah. I had this, I guess, cynical reaction to her because she gave that advice and then was speaking so publicly relatively soon thereafter in a different way. And I think cynicism is probably not the right response, but curiosity in terms of what shifted and in what, I wish we had a way to know whether actually,

Tom Pearson (24:29)
Hmm.

Amy Julia (24:34)
reflecting back on the story of Neil Erickson had changed things for her or not because she did seem to be ahead of her time. I mean, you also share, so it's in the 50s that she's doing some of this, you know, speaking out on behalf of people with intellectual disabilities. And you share an article that's written in the Atlantic in 1968 and the response even that a priest who is also an ethicist has in which essentially both

Tom Pearson (24:56)
Mm -hmm.

Amy Julia (25:03)
the father of a child with Down syndrome who died in an institution and the ethicist priest both say yes, like having some sort of euthanasia for people with Down syndrome is probably the way to go. So I felt like that was a haunting but important example of even at that point, 25 years after Erik Erickson was making the decision to institutionalize his son, there's still a parent who's getting very public

prominence in writing this essay, but then also a priest who's responding to it and saying, yeah, you go for it. And the priest, I think, is the one who says that people with Down syndrome can't love, they have no life, there's a blankness to it. You know, just these things as parents of children with Down syndrome and knowing lots of people with Down syndrome, it's like, that's just categorically untrue. Like it's just wrong. And yet it was not only believed, but publicized as recently. And I...

Tom Pearson (25:46)
Mm -hmm.

Amy Julia (26:02)
think actually more recently than 1968, but you give, that was a really striking example there as well.

Tom Pearson (26:05)
Hmm.

Yeah, yeah, it's stunning how recent some of that is, right? Because there's a long history of dehumanizing people with disabilities and intellectual disabilities, right? And in the book, I try to unpack some of that history of the term Mongolism and how that originated in a context where John Langdon Downs, who is a namesake for Down syndrome today, right? How he's this 19th century.

Amy Julia (26:27)
Okay.

Tom Pearson (26:39)
figure who, you know, he's trying to kind of create this typology of so -called idiocy, right, another term that was commonly used in the 1800s to describe different conditions. And he had observed this pattern of characteristics among some of the residents of an institution that he was supervising.

Amy Julia (26:47)
Thank you.

Tom Pearson (27:04)
And using the kind of language and categories and racialized thinking of the 19th century, he compared them to the so -called Mongolian race, right? So this term Mongolism originated in that context where he's speculating about Down syndrome, what we now call Down syndrome as representing some sort of like revolutionary reversion to a so -called more primitive

Amy Julia (27:27)
Mm -hmm.

Tom Pearson (27:32)
race, right, kind of looking at it through this evolutionary racialized hierarchical lens of the 19th century. And for me, you know, that represents this kind of this, this sort of intersection of notions of disability and race, but also this, the ways in which this was kind of dehumanizing entire categories of people, right. But that

Amy Julia (27:54)
Mm -hmm.

Tom Pearson (27:56)
way of thinking extends into the 20th century, right? Into the 1940s, into Margaret Mead's time. And it's so deeply ingrained that even people like Mead weren't thoroughly questioning it, right? In the 1940s. And it's with the efforts and the struggles of parents and advocates and others in the 50s and 60s who they're fighting for inclusion, right? They're questioning this logic of institutionalizing people with disabilities.

Amy Julia (28:08)
Right.

Tom Pearson (28:26)
They are fighting for the acknowledgement of the personhood of their children, of their siblings, of their family members with disabilities. And they achieved a lot. But that struggle to acknowledge the personhood and humanity, it continues. It's not just something that's in the distant past. And so that story

Amy Julia (28:52)
Right.

Tom Pearson (28:55)
that you were just describing involving Joseph Fletcher and this, him advocating for the medical neglect of children born with Down syndrome in the 1960s. And this was a practice that continued into the 70s and even the early 80s, where you had in the medical profession, people arguing that children born with certain conditions, they just...

Amy Julia (29:09)
Yeah.

Tom Pearson (29:24)
wasn't a life worth living and that they should be denied life -saving medical care, right? And just allow them to die, right? So this is something that is being advocated for as recently as the 70s and early 80s. And it's astonishing.

Amy Julia (29:44)
Well, and I think think I just was reading someone alerted me to something called Down syndrome regression disorder. Maybe that's it's DRSD DSRD. And they were saying that the reason this it's been going on for a really long time, this was reported in the Washington Post in May. And they said that the reason it has not been identified until now is because doctors were dismissive of patients with Down syndrome,

where they had gone from being very gregarious, involved, engaged members of families and communities to a catatonic state within the course of a week or two. And doctors were very dismissive, like, yeah, that comes with intellectual disability. And the parents were like, no, it doesn't. Like, I've known this kid for 22 years. What are you talking about? I know all these other kids. Like, that's not what's going on. And finally, there were two doctors who somewhat independently said,

Tom Pearson (30:29)
Hmm.

Amy Julia (30:41)
look, if this were any other patient, I would be doing a battery of tests to figure out what's going on. And they figured out it was an autoimmune response that was causing swelling in the brain, inflammation. And so have begun to be able to treat it, but I just, I read that and thought again, this kind of dehumanized understanding of, you know, a person with this disability or this diagnosis is not treated in the same way as any other patient who would come in. And I guess that is kind of my question, like,

Tom Pearson (30:49)
Mm. Mm -hmm.

Amy Julia (31:10)
one of the things that you do draw out is some parallels between the past and the present. Obviously, on some level, you and I have both spoken to that in our own lives in terms of the experience we had with our children. It wasn't as though we just had this like welcome embrace, you know, that might've changed more quickly than it ever did for Erik Erickson. But even, you know, for you coming from the field of anthropology, for me, I was a seminary student at the time,

Tom Pearson (31:19)
Hmm.

Amy Julia (31:37)
you know, asking these questions about what does it mean to be human and to be valued as beloved humans, right? And I still had that, you know, cultural instinct to say, I don't think I can have this child, right? So I don't want to make this about all those bad people out there because I'm certainly see myself in the mix. And yet I also recognized in your book and in my own thinking that there's a parallel

Tom Pearson (31:50)
Mm -hmm.

Amy Julia (32:03)
in terms of the advice that many women who have a prenatal diagnosis of Down syndrome, the advice that they receive and the advice that the Ericksons were given in the hospital in terms of, you know, essentially don't have this baby. Like it's going to harm your family. It's going to harm you. It's going to harm society if you do. And I just wondered if you could speak a little bit to like what's the same, what's different, like how are...

Tom Pearson (32:17)
Mm -hmm.

Amy Julia (32:32)
How has our culture shifted? How is it not?

Tom Pearson (32:35)
Yeah, yeah. I think, you know, I think there is historically and in the present there remains a systematic devaluing, right, of people with Down syndrome and this assumption that a life with Down syndrome is just somehow difficult or tragic or negative, right, rather than just another way of living and being human. You know, and we encounter that systematic

Amy Julia (32:55)
Yeah.

Tom Pearson (33:05)
devaluing and stigmatizing of Down syndrome and in a lot of different ways, right? You know, we encounter it all the time in the school district. I mean, we, there's many great people and advocates, but you know, I can't help but feel as if there's also the just like constant low expectations, right? And people just doing the bare minimum because they don't, they don't think it matters, right? Cause it's just a kid with Down syndrome.

Amy Julia (33:24)
Yes.

Tom Pearson (33:34)
So those sort of views, whether or not they're explicitly stated, are pervasive. And when you look at the history of institutionalization, the history of sterilizing of people with Down syndrome or disabilities, the history of medical neglect, you can follow this thread from the eugenics era to the present.

Amy Julia (33:53)
mmhm

Tom Pearson (34:02)
where the rise of prenatal testing and especially the kind of non -invasive tests that exist now, where it's easy to get kind of very early in a pregnancy an indication of whether or not a fetus might have an extra chromosome or a copy of the 21st chromosome, right? And then a lot of the marketing,

Amy Julia (34:25)
Yeah.

Tom Pearson (34:31)
and promotion of that, things like non -invasive prenatal testing, NIPT, and so on. It often emphasizes wanting to identify conditions like Down syndrome, right? And there's...

Amy Julia (34:42)
Right. When you write at one point, you're like, it's advertised as no risk to the fetus. And then you write unless your fetus has Down syndrome. And I just I was like, Whoa, that is I mean, I just haven't heard it quite put in that strong words, but I appreciate that.

Tom Pearson (34:50)
Right, yeah, because of.

Yeah, and just kind of pointing out the ways in which, right, like in the United States, but especially in other Western European contexts, there are very high rates of termination that are associated with a positive prenatal diagnosis of Down syndrome. And as I say in the book, I support women's right to take

Amy Julia (35:06)
Yeah.

Tom Pearson (35:25)
to choose, right, what to do with their pregnancy and their bodies. And I think there's a lot of reasons why someone would pursue an abortion. You know, so I would do not advocate for restricting access to that, right. But nevertheless, one, you know, can't help but feel that there, you know, there's this kind of targeting, right, of certain conditions with prenatal testing. And it just kind of furthers this,

like taken for granted view of conditions like Down syndrome as somehow undesirable, right? That there's this sort of tacit pressure to do something then about that pregnancy. And so some scholars and activists, they kind of describe it as a sort of velvet touch of eugenics, right? Where it's not, you don't have this sort of institutionalized policy of trying to prevent the virus.

production of certain categories of people, which was the focus of the eugenics movement in the early 20th century, because certain categories were deemed a threat to the health of the body politic. Rather today, you have this more kind of subtle tacit devaluing of certain groups of people. And then, you know, know, left, women or pregnant people left to make their own choice about what to do about that. And so,

Amy Julia (36:52)
Right.

Tom Pearson (36:55)
Yeah, it's kind of troubling patterns and.

Amy Julia (37:00)
Yeah, no, I mean, I have followed these conversations, I guess, for really as long as Penny's been alive with more attention. And I agree with you, there's a difference between kind of a state -sponsored, institutionalized, you know, targeting. Although there have been countries that have done that in terms of, it was, I don't know, maybe it was 2007, Denmark actually had a page on their

country's website that was proclaiming it. They took it down relatively quickly, but that was proclaiming their intention of having a national prenatal screening program that would result in no babies being born with Down syndrome. And it was something to champion. So, you know, that to me does seem more like a state -sponsored and pressured thing than what we're looking at in the United States. But then I also think there's a, I guess it's so interesting because certainly we are talking about the individual choice that any pregnant woman will

Tom Pearson (37:41)
Mm -hmm.

Amy Julia (37:58)
make, whether that's with an unintended pregnancy or a pregnancy that receives a prenatal diagnosis. But there's always a collective context. And I think this goes back to that idea of cultural anthropology. And so if the collective context in which you're bringing a child is one that says, we don't want that child, that may or may not have anything to do with whether you, I mean, I've talked to women who have chosen abortion in the face of a prenatal diagnosis, not because they didn't

love their baby and want their baby with Down syndrome, but because they thought, what happens when I'm gone? Like, I don't know that this child will be received by my family, my community. And, you know, I don't need to get into all of those details, but I also really think that we can over individualize choice in America in order to get the rest of us off the hook of saying, what are we communicating as a society about the value of

Tom Pearson (38:30)
Mm -mm.

Amy Julia (38:55)
every human life and about these lives in particular, these lives who are experiencing school differently and have different medical concerns and so forth and so on. And yet, and this is one thing and maybe we'll start kind of landing the plane here. There is a, at the very end of the book, I'm just going to quote you back to you because this is one of my favorite things that you wrote. You said, disability is not just an inevitability

Tom Pearson (38:57)
Mm -hmm.

Mm -hmm.

Amy Julia (39:24)
of the human experience, but also generative. Disability is a positive, valuable part of many people's lives, a source of innovation and progressive change, a basis for building new forms of solidarity and community, and an important way of being in, knowing, and experiencing the world. I think that's so beautiful. I want to put it over my desk because that sense of what we were talking about earlier, this not simply being, yeah, it's an inevitable part of all of our lives, but...

actually a generative aspect of the human condition, I think is really beautiful. And so I thought maybe, you know, the name of this podcast is Reimagining the Good Life, and you have written here about reimagining the good life as it pertains to Michaela and your whole family. And so I wondered if maybe as we come to a close, you could speak to, in what ways has being Michaela's dad and writing this book prompted you to do some of that work of reimagining, especially around this idea of the good life?

Tom Pearson (39:55)
Mm -hmm.

Yeah, yeah, a lot of things come to mind. I think one of the ideas I was reflecting on as you were talking was just the ways in which we all rely on each other, right? You know, there's this mutual interdependency that is at the very core of the human experience. I mean, we, when we talk about this question of choice, right, it feels like a very lonely thing. But, you know, there's a shared cultural beliefs and values that inform the choices that we make.

Amy Julia (40:32)
Mm.

and

Yeah.

Tom Pearson (40:52)
In the United States in particular, we really invest in this idea of individualism and self -reliance. And yeah, those are great values, right? But ultimately we rely on others. After we're born, obviously, right? We are very dependent on a family system and on others for a very survival, but that continues throughout the course of our lives, right? And society creates systems of support or sometimes it doesn't, and we fail to do that.

But just kind of recognizing the ways in which we are all in it together and that dependency is not an inherently negative thing. That's just part of what it means to be a part, you know, a member of society and what it means to be human. Yeah. And just recognizing, you know, and celebrating like all the different ways to experience life. You know, I never realized how invested I was in

Amy Julia (41:30)
Yeah.

Mm.

Tom Pearson (41:52)
certain definitions of success and notions of accomplishment and ideas of competition. And having Michaela push me to question that, and why was it that I was so invested in these things that might not be, in some ways these are okay values, right? But they might not be, and for me,

weren't the values I really wanted to be defining myself around, right? These notions that are very tethered to like a capitalist society, right? Where people are just constantly competing to try and get more, to earn more, but to what end, right? There are other ways to define what it means to live a good life, right? There are other things that make life worthwhile.

Amy Julia (42:48)
Mm.

Tom Pearson (42:48)
You know, and so, yeah, just kind of rethinking that, and celebrating that and embracing, embracing that. And then just in kind of an openness, right to what lays ahead and openness to the unbidden, you know, if, if, if, if you had ever asked me before I had children, if, if I wanted a child with Down syndrome, I obviously, I would have said, it would have been obvious to me to say no, right. I would have, there's no way I would have wanted that.

Amy Julia (43:17)
Mm -hmm.

Tom Pearson (43:19)
And then, but you know, in retrospect, it's, it's been wonderful. It's been joyous. It's been just, it's just the experience of parenting. All my kids has been transformative and life -changing. And it's really pushed me and taught me to just, to not, try to ignore or reject things I don't understand, right. And to be open to the unexpected.

Amy Julia (43:33)
Yeah.

Tom Pearson (43:47)
I think that's a standpoint, right, in life that applies to a lot of different things.

Amy Julia (43:53)
Well, it strikes me that in the abstract, you weren't given an abstract child with Down syndrome. You were given Michaela, like this very specific, particular member of your family. And obviously, it's very hard for us in the abstract to think about. So maybe I think there are people who actually do have an understanding of intellectual disability that is much broader than mine was when Penny was born and more open. I have

Tom Pearson (44:04)
Hmm.

Hmm.

Amy Julia (44:20)
heard stories of people who really were able to welcome immediately their children with Down syndrome. And I think I could do that now. I think I would, you know, but I also think about the fact that it was once I actually recognized that, I have not been given a diagnosis. I've been given a baby and this particular baby who is in our family, that changed things a lot as well. And I think that's one of the things I love about this book is just the ways in which you are able to take some of these

Tom Pearson (44:25)
Hmm.

Exactly.

Amy Julia (44:50)
really big picture anthropology and history and politics and all sorts of things. And also really weave in this very personal story, both about your delight and love for your child and also your experience of being a son and a brother and a grandson and your whole family's story into why all that history and anthropology actually matters.

Tom Pearson (44:53)
Mm.

Yeah. Yeah. And looking back, you know, the, obviously the impetus for, for writing the book was wanting to explore my own experience, becoming the father of Michaela and grappling with this diagnosis of Down syndrome. But today it's kind of feels weird to talk about it because I don't experience Michaela as a child with Down syndrome. I don't look at her through that lens anymore. You know, it was not long after her birth and coming to terms with that, that, that

began to fade. And so it almost feels foreign and like, you know, it feels misplaced to be talking about her as a kid with Down syndrome, even though she obviously has Down syndrome and there are unique issues that come with it, but that's not something that defines her for me and my family or her siblings. And I think that really reflects a lot of the ways in which disability in general,

Amy Julia (46:05)
Yeah.

Tom Pearson (46:12)
It's a tough term to define, right? It's a complicated experience. There's a lot of different forms of disability and experiences of disability and some positive, some negative. And at the end of the day, it's really difficult to pin down. And a lot of the ways in which we define these things and think about them are really so thoroughly informed by cultural values, right? And cultural norms and...

Yeah.

Amy Julia (46:45)
I'm gonna close this with one more quotation from you that I think speaks a little bit to what you were just saying. And this is early on in the book talking about why Down syndrome happens. And you say, there is no why, no specific reason the trisomy happens. It just does a variation of chromosomes in the entanglement of biological reproduction and cellular formation. It is, Down syndrome is a natural part of the human condition, part of the diversity of humankind. So thank you for sharing.

just your perspective on that diversity and hopefully just continuing to open our hearts, minds and spaces to actually welcome that type of diversity.

Tom Pearson (47:25)
Yeah, of course. Thank you for having me.