What to Expect When You’re Not Expecting Down Syndrome

Jen: Do you have a question about what makes us human? We want to try to get it answered! You can send us questions on Facebook, at SAPIENS.org, tweet them @sapiens_org with the #sapienspodcast, or you can leave us a short voicemail at (970)368-9730, and we might play your question on the show.

I’m Jen.

Chip: I’m Chip.

Jen: And we’re the hosts of SAPIENS: A Podcast for Everything Human.

[SAPIENS intro]

Thomas: I just remember feeling, like, you know, I’ve been through this before. I know what exactly is going to happen. And at that point, I was still in this mindset where I felt pretty much immune to the improbable. You know, there’s always a possibility that things might not exactly go as planned in life, but I never thought that that would happen to me.

Chip: When Thomas Pearson and his partner had their first child, they read parenting books and prepared in all the other ways anxious first-time parents do. They were excited and nervous that something could go wrong, but nothing did. He was a healthy and happy baby, and they were relieved. So when they were expecting their second, Thomas and his partner were confident that they could handle anything that came up.

Thomas: But we still had the routine ultrasound, and they did the routine tests that, hypothetically, would flag potential problems that one could then look into further. There was nothing, no flags were raised throughout the entire pregnancy.

Chip: And then, after about nine months, their daughter Michaela arrived.

Thomas: It was one of those profound moments, one of the most profound moments of my life. That relief that they are here, and everyone is OK, and just joy, that now I have a daughter.

I can only recount those next few days from my perspective and my set of experiences. On one level, they were pretty routine. You spend 24–48 hours in the birth center before they allow you to go home, and in those initial hours, I just recall having this feeling that something might be a little bit … off.

When infants first emerge into this world, they’re all scrunched up, and they look weird [chuckles]. It takes a few days for their profile to kind of open up a little bit. She looked like an infant that had just been born. Her ears were a little bit small, and she was a little bit scrunched up. Her eyes were a little bit almond-shaped but not anything that immediately made me think of Down syndrome.

I asked if the pediatrician had come by, and what did she say? The pediatrician said she was perfect. She was healthy, that she’d see her again in a week. And so, any of those initial feelings of uncertainty that I wasn’t really even able to articulate yet but were beginning to percolate, I like, ignored it then.

And so, it was then, after being home for a day and just seeing other things—a little wider neck in back that seemed a little bit off. To this day, I don’t know what prompted me then to, as we do in our digital age, we Google things, right? I don’t know what prompted me to do that, but I recall Googling “Down syndrome.” All these images show up on the Google search. It just hit me that, these are features that look an awful lot like Michaela.

It was just a feeling of … it was just overwhelming. It’s a feeling of, sort of like, dread. I walked anxiously upstairs with my iPad in hand to express some of my concerns with my partner, and she was sitting in bed nursing Michaela and had her computer on her lap, and she had just searched the same thing.

That day we happened to have an appointment back at the birth center because Michaela had jaundice. And at that point, I wasn’t even sure if we were going to express our suspicions to anyone or how we were going to deal with that, but my partner mentioned it to the nurse. And the nurse was like, “Yeah, we had talked about that possibility.” That was the first time anyone had revealed to us that they had any suspicion. The nurse immediately called the pediatrician, who immediately ordered a blood draw so that they could determine whether or not Michaela had Down syndrome.

Then there’s this period of waiting and uncertainty and pondering all these different possibilities. And feeling this sense of … at that point, it’s more of a sense of dread, wondering, can I, can I handle this? Starting to feel that you’re entering into something that’s going to change your life.

Even though we didn’t officially have a diagnosis yet, I just felt this urge to get away. And for me, that just meant going on this long walk and calling my brother. And I just started crying. He was very comforting and reassuring, and encouraged me just to go be with my family, and so, yeah, of course, I went back then. But it was just … that… those days of waiting were filled with a sense of fear, a sense of dread.

Amid that, I began to distance myself from Michaela. So, infants often want to feed every few hours at night, and so I told my partner that I just needed to get some sleep. So I started sleeping those four or five days on the couch downstairs, just kind of feeling like I didn’t want to be in that space. And that’s where this, these … beginning to feel like maybe it would be better if, not only if she wasn’t diagnosed with Down syndrome, but if we didn’t have to deal with this.

That was my lowest moment of my life, definitely.

Chip: All this happened four years ago this past February. Today Michaela is a healthy, happy child. Thomas says she loves riding her bike, playing with her older brother and younger sister, reading, and watching movies.

Jen: Can you tell us what one of her favorite movies is?

Thomas: Right now, she would probably say Frozen.

Chip: Classic. Can’t go wrong with Frozen and 4-year-olds.

Thomas: Yeah, so that’s one that she definitely enjoys watching.

Chip: But as Thomas recounts in his recent article for SAPIENS.org, he is still haunted by that week of uncertainty after her birth. What happened to him? Why did he feel this way?

Jen: We were curious too. So we got in touch with Thomas to hear what he’s learned about Down syndrome, stigma and difference, and his relationship with his chosen discipline, anthropology. Thomas is an associate professor of cultural anthropology at the University of Wisconsin, Stout.

But we’ll begin with the question that started Thomas on his own journey of understanding. Why was he so devastated by the fact that she was different from what he had expected?

Thomas: That’s the key question. Why did I experience that as something tragic? And why did I feel this urge to mourn and to grieve as if someone had died? And so, after the diagnosis, it was weeks of coming to terms with that emotionally and intellectually. As an anthropologist, as an academic, one of the things I started to do was to just read about Down syndrome and about disability in general.

As part of processing my own experiences and reactions, I wanted to understand, why was I feeling that this was something that had to be grieved?

Chip: One thing I was so struck by with your article was this phrase, you said you had a “flawed cultural toolkit” to deal with Michaela’s having Down syndrome. What did you mean by that: a flawed cultural toolkit?

Thomas: Well, I think that Down syndrome, and disability in general, is subject to a tremendous amount of prejudice and bias and stigma. Even though I was trained as an anthropologist—I have a Ph.D. in cultural anthropology—and this is a discipline which prides itself in valuing and wanting to understand human diversity and not casting judgment on difference. Even though I was steeped in that professional worldview, I still had trouble coming to terms with a child that had been born with a difference. Even though I am an anthropologist, I am not somehow outside of my own cultural context. And so, you know, just in terms of how our society, how we learn to view disability in very limited and often prejudiced ways, that informs the ideas and expectations of expectant parents and of new parents who face a diagnosis that they weren’t thinking that they’d be receiving.

Jen: So what exactly did that mean for you, Tom? Before Michaela came into your life, what did you think about disability?

Thomas: I’m not even sure I can say I viewed disability in a certain way. It’s just something that I didn’t even acknowledge as fundamental to the human condition. It’s something that I just conveniently ignored. I don’t think I’m alone in doing this, among people in general but particularly among anthropologists. Disability, whether cognitive or physical disability, it’s part of the shared human experience. And in a very fundamental way, everyone will experience disability at some point in their life, through accident or just the process of aging. We will experience that; we will be dependent on others for our care.

Despite disability being an aspect of human diversity and being so fundamental to the human condition, it’s something that tends to be marginalized within anthropology. When I think back to my training in the early 2000s, it was not something that was really ever explicitly addressed in our courses or in our reading. I’m sure that disability and disability studies is gaining more attention in recent years, and that’s important, but I still think it tends to be marginalized within the profession, which is curious because it is so central to the human experience.

Chip: One thing that really strikes me with your story, Tom, is how you are coming to this moment of discovery from all these different angles, you know. You’re a parent; as an American, you inherit, as you say, this cultural toolkit; and then you’re an anthropologist, a scholar who’s been given all these tools to dissect and unpack your experiences. I’m just curious how you really came to the moment where anthropology, you know, this training, and seeing difference and seeing our society in a different way, when did that moment come to you, and how did anthropology really turn things around for you in understanding your life and how to deal with Michaela?

Thomas: Initially, I was going through the process of coping with unexpected news and thinking about my life differently. Initially, I felt a sense of resentment for anthropology. Why was I reacting in such a narrow-minded way? Initially, I was feeling like anthropology had let me down to some extent. As I kind of dug into it further, reading about the social history of Down syndrome, exploring some of the research on disability and cognitive disability, realizing that there is a lot there that could help me process this, to understand why I reacted in a certain way. And feeling like … awestruck at my own ignorance.

When you look at the history of Down syndrome, at least the category itself, it has a fascinating history over the last 150 years. In the early decades, it was framed as, you know, through the lens of evolution, of social evolution, and viewed as a form of racial degeneracy. In the early 20th century, Down syndrome was referred to as Mongolism or as Mongolian idiocy, very derogatory terms framed through the lens of race. Reading about that and seeing how central, ideas about disability have been so connected to the history of racial classifications, it’s remarkable that anthropologists don’t talk more about this.

Reading that and then thinking about the ways in which, in reflecting on my own experiences and ideas about success and personhood, I didn’t realize that that was shaping my expectations. And recognizing that this sense of mourning that I was experiencing, the loss that I was mourning was not the death of a person but the loss of this imagined future that I unwittingly was holding on to.

Jen: Has this experience made you a better anthropologist?

Thomas: In my education as an anthropologist, my anthropological training was within an approach that really emphasized the role of culture in shaping human behavior, really emphasized the nurture side of that nature–nurture debate to such an extent that I kind of learned to constantly challenge any claims about underlying human biology in constructing human behavior.

Chip: So, in other words, we are first and foremost social beings more than biological beings?

Thomas: Exactly, and, to an extent, for better or worse, that was something that I really privileged in trying to understand and interpret human behavior, and I still do! I still think that looking at things in terms of human behavior, I think culture plays a very powerful role.

But I found myself in the middle of the classroom, when talking about this idea of culture and cultural construction of things and the role of culture in shaping human behavior, finding myself pausing because my daughter, who has an extra copy of the 21st chromosome that is woven throughout every cell of her body, that affects so many things about her in terms of how she learns and how she relates to language. How can I discount the role of biology, when it is clearly playing a role in her development? It’s not so much trying to decide which side has more weight, nature or nurture, but thinking differently about the interplay forming and shaping the human experience.

Jen: And certainly, there’s a biological difference, but how we interpret what that biological difference means is part of that cultural toolkit that you’ve mentioned that we receive.

Thomas: Right.

Jen: So, I’m wondering now, why should the rest of us learn to think differently like you did? And how can we overcome that flawed cultural toolkit you’ve been talking about?

Thomas: That’s such a fascinating question. How do we change people’s views of the world? How do we loosen the architecture of their taken-for-granted outlook, things that they might not even be aware of? Because I think Down syndrome, you know, is subject to a lot of bias and prejudice. Relatively speaking, people tend to be aware of Down syndrome. They have more experience with it than, perhaps, other conditions. It’s one that people viewed, especially among children, positively. Even though there is this acceptance, and even though in the past 30 years, there has been a lot of emphasis on integrating people with disabilities into mainstream school systems and community settings, and that’s all been welcome and important. But even in the wake of significant social and institutional changes, I still think there is a lot of prejudice that exists. People like myself, when I was coming to terms with Michaela’s diagnosis, people have a lot of taken-for-granted bias about Down syndrome, but also just about basic notions of success and what it means to be successful, and what it means to achieve, and who is viewed as belonging within our shared human community.

Yeah, I think there’s a lot of work to be done to broaden that in the sense of, how do we not only accommodate but value the diversity that constitutes what it means to be human? How do we address the bias and other social barriers that are often put up that restrict people with disabilities?

Jen: Do you still have those feelings of fear and dread when you think about Michaela and her life?

Thomas: No. No. In those initial weeks and months, you know, I did see Michaela through the lens of Down syndrome and beginning to think about my life differently. But, you know, that pretty quickly began to fade, and if anything, it’s coming to terms with that, and reflecting on my own reactions and feelings, and reflecting on them quite critically has encouraged me to see the world with a type of openness. There’s this phrase that I love, that looking at things, or from the standpoint of an openness to the unbidden. There are things in life that we can’t control, and that’s OK. Being open to things that are new, that are unfamiliar, that’s a valuable ethical and moral outlook. I didn’t realize that I had expectations for what my children would be like and the type of family that I would have. I’m very grateful that I’ve questioned that and that I’ve been prompted to rethink my taken-for-granted assumptions about success and about achievement, and about what it means to be human.

Chip: It sounds like you’re saying Michaela has taught you so much about being human, about being a parent, about being an anthropologist—all at once.

Thomas: Yeah, exactly.

Jen: Have you thought about Michaela hearing this someday? What do you hope she thinks about you sharing this experience with us?

Thomas: Yeah, that’s such a complicated question. When I first wrote the article that was published in SAPIENS, writing that piece was, for me, it was personally useful and important, and it helped me to come to a point of closure on the experience of her diagnosis, and so it was therapeutic for me. But I grappled with whether or not I wanted to share it with the rest of the world, whether or not I wanted that to be public, not because I feared how people might think about me, but I wondered what will happen when Michaela reads this, what will happen when she hears this interview? Because I expect that she will be able to read it at some point in her life, and my fear is, how she will interpret it? And will she draw the conclusions that I expect readers to draw from that?

But I felt that my experience is one that is not necessarily unique, that there are other parents who, you know, they receive a prenatal diagnosis or, like, in my case, they receive a diagnosis after their child is born that they weren’t really expecting. That experience of feeling that profound sense of grief but also this fleeting death wish, which was hard for me to admit and acknowledge, but after doing so, you know, I realized that it’s not an uncommon experience. It really marks that profound sense of uncertainty and crisis that one is experiencing in terms of this script they had for their life. I wanted other parents to know that they’re not alone, there are reasons why they are having those experiences, and there are sociological explanations for why people react the way they do. And so, I felt that the benefits of the article outweighed my fear of what Michaela would think of it. You know, we’ll cross that bridge when we come to it. I truly hope that she views this as a father’s love letter, because it’s from a standpoint of just deep and profound love that I wrote that and that I’m sharing this experience. Because I think it’s valuable, not just for me and for her but for other people as well.

Jen: You know, I really, I thought about this interview with Thomas for quite a while. And I was just so struck by his generosity of spirit, and I’ve just been so inspired by his willingness to be so open in order to help other people in their own experiences. But mostly it was just really emotional.

Chip: Yeah, as a father myself, I can only imagine what he had to go through and his process of discovery and revelation. Another aspect, for me, of this interview is that it reminds me of a really, really powerful book, one of my favorites, actually, by a journalist named Anne Fadiman. It’s called The Spirit Catches You and You Fall Down. It’s a story of a family that came from Laos. They’re a Hmong family in Southeast Asia, and they moved to California in the aftermath of the Vietnam War and conflict in that region. And their daughter has epilepsy. And, from a Western medical viewpoint, this was a problem to solve. This was suffering. You take medicine. You solve the problem. From the Hmong perspective, though, this child actually was given a gift because epilepsy was a way to communicate with ancestral spirits and the spirit world. And it just became this huge battle between the medical system and the child care services, who were trying to fix this child, and the Hmong family that wanted to embrace what the child had been given. It’s tragic, and it’s an incredibly powerful story of how we create these concepts and categories such as “disability.”

Jen:  And I think that’s what’s so powerful about this example—both Thomas’ and The Spirit Catches You—is that we see that these things that we take for granted about what it means to have epilepsy or what is means to have Down syndrome, those meanings we’ve created in our own cultural context. And when we look outside of that, it helps give us other models for thinking about what these different labels might mean, and maybe we just change our behavior and thinking and interaction with folks that have those experiences.

Chip: Well, I think as anthropologists, and I hope everyone can learn to come at these questions in exactly that way, is not approach them with labels or our own preconceptions or assumptions but really to begin, most fundamentally, with the human experience. I think that’s definitely a big takeaway from Tom’s story.

Jen: Yeah, to value difference instead of judge it.

[credits]

Chip: This episode of SAPIENS was produced by Paul Karolyi, and mixed, audio edited, and sound designed by Jason Paton. It was hosted by me, Chip Colwell.

Jen: And me, Jen Shannon.

SAPIENS is produced by House of Pod, with wondrous contributions from Executive Producer Cat Jaffee and Production Assistant Freda Kreier, who provided additional support.

Chip: Meral Agish is our fact-checker.

And a special thanks this time to Thomas Pearson. We have included a link to the article he wrote for SAPIENS.org in the show notes to this episode, so check it out.

Jen: This is an editorially independent podcast funded by the Wenner-Gren Foundation, which has provided vital support through Danilyn Rutherford, Maugha Kenny, and its staff, board, and advisory council.

Additional support was provided by the Imago Mundi Fund at Foundation for the Carolinas.

Chip: Thanks always to Amanda Mascarelli, Daniel Salas, Christine Weeber, Cay Leytham-Powell, and everyone at SAPIENS.org.

Jen: SAPIENS is a part of the American Anthropological Association Podcast Library.

Chip: Until next time, be well, fellow sapiens.