When his second child was born, Thomas Pearson was taken aback by an unexpected outcome. He and his partner, Tiffani Taggart, had a newborn daughter with physical traits associated with Down syndrome, leading their doctor to recommend a blood test that a week later confirmed the genetic abnormality responsible for the condition.
For Pearson, an anthropology professor and chair of the anthropology department at the University of Wisconsin-Stout in Menomonie, the event triggered an outpouring of grief as he felt the world thrown off its axis.
Curiosity followed as he began to interrogate his own reaction. “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,” Pearson writes in his new book, “An Ordinary Future: Margaret Mead, the Problem of Disability, and a Child Born Different” (University of California Press, 222 pages).
Prof. Thomas Pearson, UW-Stout
From the deep despair that was his first reaction, Pearson developed “deep love and appreciation” for his daughter, Michaela, just as she is, he said in an interview. “It didn’t take very long to get to this point. I wouldn’t want it to be any other way.”
The book weaves together intimate personal memoir and scholarly analysis. It is both the story of how he and Taggart faced their new reality as parents and the murky history of his chosen academic field.
The earliest anthropologists helped popularize racist theories; their successors went on to repudiate those ideas but fell short for decades in granting full humanity to people with disabilities, cognitive and developmental disabilities especially.
Pearson said he has written the book for multiple audiences.
For parents of Down syndrome children or children with other disabilities; he sought “to explore my own personal experience and write about it in a way that would be meaningful to them,” he said. And for other anthropologists and students, he has sought to confront with candor “the history of cultural ideas about Down syndrome and disability [in] my own profession.”
From biology to culture
Pearson’s book illustrates how ideas about cognitive disability that were shaped by anthropologists in the 19th century continue to echo faintly in the 21st century, even as anthropology itself turned away from those ideas in the century between.
In the 1800s, Pearson writes, “many early anthropologists speculated on the fixed ‘ethnic’ or ‘racial’ divisions of humanity, viewed through a lens of racial hierarchy.” These ideas spread to medicine, psychology and other fields.
Down syndrome was once called “Mongolism” because many Down syndrome people have an eye shape associated with Asian people. White doctors assumed Asians, Black people and others who were not white represented earlier, inferior stages of human evolution. Racial differences were associated with being “feeble-minded,” and “mental deficiency” was linked to “immoral behaviors ranging from alcoholism and criminality to sexual promiscuity,” Pearson writes.
The paradigm also helped fuel the growth of eugenics — the belief that the population could be “improved” by controlling who would, and who would not, be allowed to reproduce, a belief that aligned with those ideas of racial hierarchy and became central to the Nazi ideology.
Over the course of the 20th century, a new generation of anthropologists turned away from interpreting human diversity as biologically determined. Franz Boas at Columbia University argued distinctions that had been applied to rigidly defined racial categories were meaningless and that culture, not genetics, was at the root of differences in the behavior of human groups.
His students went on to help reshape anthropology into the field that it is today, centered on the study of culture — “learned behaviors, norms and beliefs that make a people unique,” as Pearson defines the concept in his book. One of those students, Margaret Mead, became widely influential in helping to popularize anthropology to the wider public.
“Today she’s known as sort of having been an intellectual renegade in the early 20th century,” Pearson said. But while she and their colleagues challenged eugenics and their predecessors’ racial determinism, “they really didn’t have a lot to say about disability.”
In 1944, Mead — who had already made a mark both in anthropology and in popular awareness for “championing alternative ways of being human,” Pearson writes — advised her friend, the pioneering child psychologist Erik Erikson, that he and his wife should place their infant son born with Down syndrome in an institution.
Pearson writes that “this story hits me close to home” as both an anthropologist and the parent of a Down syndrome child. Recognizing the contradiction between her advice to Erikson and her embrace of cultural diversity, he writes of Mead: “The weight of her culture was too much.”
Disability and ‘what it means to be human’
The book’s narrative shifts back and forth between the story of changing paradigms, attitudes and prescriptions for people with intellectual and cognitive disabilities and the story of Pearson and his family watching their daughter, Michaela, grow.
Family anecdotes help illuminate the complex and often dark history of how people with disabilities were viewed. A trip to the Minnesota State Fair occasions Pearson to reflect on how eugenics found its way into seemingly innocuous corners, such as “fitter families” contests at county and state fairs a hundred years ago. While ostensibly to promote pediatric health care, these events had a subtext of “themes of heredity and controlled reproduction,” he writes.
Along with the World’s Fairs in Chicago and St. Louis that straddled the turn of the last century, “these were events that were intended to celebrate industrial and scientific progress, agricultural technologies, and advances,” Pearson said.
But they also put people on display to demonstrate “societal evolution from so-called primitive to civilized,” he added. “In American society in the late 19th and early 20th century, the white fairgoers viewed themselves as the pinnacle of civilization and progress and modernity.”
Pearson also writes about the legal struggle that he and Taggart had with Michaela’s school district over its decision to lift a mask rule during the COVID-19 pandemic, which had led them to keep her home from school when they and she wanted her to be able to attend in person.
An administrative law judge ultimately ruled that because Michaela had been vaccinated, “it was deemed safe for her to attend school” even without the recommended mask mandate, he writes. The outcome demonstrated for him the importance of defending disability rights “to push back against a dangerous, antiscience social movement that puts all children at increased risk of harm and undermines public health.”
Margaret Mead’s views about disability evolved in the years after she advised her friend Erik Erikson to put his infant son with Down syndrome in an institution. Pearson writes that she came to ally herself with the disability rights movement and with the rights of parents of developmentally disabled children who sought support for caring for their children at home instead of sending them away.
“I think anthropology has been slow to acknowledge how fundamental disability is to what it means to be human,” Pearson said. “In recent decades disability studies as a subfield, both in anthropology and beyond, has grown and gained in legitimacy. But it’s still often kind of viewed as marginal. So I think there’s still a lot of work to be done.”
Pearson has come to view disability, in some senses, as a social construct, just as anthropology has come to view race as a social construct.
“There are conditions that are a part of people’s biology,” he said. “But whether or not they are the target of prejudice or discrimination, whether or not they are denied access to health care or full inclusion, that’s a societal question. That’s a question of how we’re organizing ourselves as a community.”
GET THE MORNING HEADLINES DELIVERED TO YOUR INBOX
originally published at https%3A%2F%2Fwisconsinexaminer.com%2F2023%2F08%2F29%2Fan-anthropologist-comes-to-terms-with-a-child-born-different%2F by Erik Gunn