Thomas W. Pearson discusses his new book, An Ordinary Future: Margaret Mead, the Problem of Disability, and a Child Born Different.

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Q: Can you tell us the story of Margaret Mead and Erik Erikson’s son Neil?

In the 1940s, Margaret Mead was close friends with the psychoanalyst Erik Erikson. They shared a common interest in culture and childhood development, and both would become famous public intellectuals. Mead represented a new brand of anthropology in the early 20^th century that sought to both understand and appreciate human variation in all its forms. Against the backdrop of the eugenics movement, she questioned Western cultural norms around gender, sexuality, and parenting, and challenged efforts to mark some groups as undesirable or burdensome on society. I was surprised to learn, then, of her role in the fate of Erikson’s son, Neil. When Neil was born in 1944, he was soon diagnosed with “Mongolism,” the old, racialized term for what is now called Down syndrome, and doctors advised sending him to an institution. Unsure of what to do, Erikson phoned Mead. One might assume that Mead, today celebrated as an icon of cultural relativism, would have counseled acceptance. But to my surprise, she agreed with the doctors, and Neil was separated from his family and sent away. Sadly, Erikson then told his other children that Neil had died during childbirth.

Q: How does the story about Neil Erikson connect with the lived experience of people with Down syndrome today?

On a personal level, as an anthropologist and the father of a now 8-year-old daughter with Down syndrome, the story about Mead and Erikson helped me to confront and explore my own ableist biases. I came of age in the era of growing inclusion and visibility of people with disabilities. But when my daughter Michaela was diagnosed with Down syndrome in the days after her birth, my initial reaction was anguish. An impulse to reject what I didn’t understand intermingled with a desire to bond with my newborn child. The feelings of rejection soon faded, but I was faced with trying to make sense of why I experienced the diagnosis as distressing, especially given my training as an anthropologist, a discipline that purports to understand and embrace human diversity.

Image Description: The cover page of An Ordinary Future: Margaret Mead, the Problem of Disability, and a Child Born Different.

Mead, of course, came of age in a time when people with Down syndrome were described as subhuman and often hidden away in institutions where they faced neglect or horrific abuse. Interestingly, in the 1950s and 1960s, as a public intellectual Mead was gradually drawn into emerging parent-led movements and new forms of disability advocacy that criticized institutionalization and fought for access to basic things like healthcare and education. Despite her fateful advice to Erikson, decades later Mead became a supporter of disability rights and called for embracing a wider understanding of what it means to be human, including the experience of disability and what is now commonly referred to as neurodiversity. For me, the story about Mead and Erikson reveals how deeply immersed we are in the dominant cultural beliefs and values of our time, and how difficult it is to question those beliefs, even when they are used to justify the exclusion of entire groups of people. But it is also a story about activism and change, and of recognizing that disability – in all its forms – is fundamental to the human experience.

Q: What are your thoughts about bioethical controversies surrounding prenatal testing for fetuses with Down syndrome?

A lot has changed over the last few generations regarding the beliefs that were once used to marginalize and exclude people with disabilities. Paradoxically, as public visibility and acceptance of Down syndrome increased in the 1980s and 1990s, the emergence of prenatal testing pushed ethical judgements about Down syndrome from the public to the private domain. Today, we typically don’t have to contend with eugenic policies that define groups as “deficient” or “unfit” for reproduction, but instead we have a medicalized discourse that routinizes screening for “abnormalities” and subtly reinforces arbitrary distinctions between “normal” and “abnormal,” or desirable and undesirable. It’s important to remember that Down syndrome does not prevent someone from leading a meaningful, positive life. Nevertheless, prenatal screening is commonly used to identify the condition and research suggests a diagnosis is often delivered and experienced by prospective parents as if it were “bad news.” Pregnant people then must decide what that information means for them. I am pro-choice and support the rights of women and pregnant people to access reproductive healthcare, including prenatal testing and abortion, and to make their own decisions about their bodies. However, I’m alarmed by the high rates of termination associated with prenatal testing for Down syndrome, and I worry that ableist cultural beliefs and values inform both medical discourse and personal decision-making about this.  

Q: Why do you want the future to be ordinary (i.e. in line with the title of your book, An Ordinary Future)? People often spend their lives striving for the extraordinary, in many ways.

With the title of my book, I intended to invoke a couple themes. For one, when parents face an unexpected diagnosis for a child, especially a condition such as Down syndrome, many experience it as something tragic or negative. Such a diagnosis can force parents to confront unacknowledged expectations they previously had about the future. I think many grieve the loss of an imagined future, one informed by shallow cultural expectations associated with achievement or idealized forms of success. Parents, including myself, soon come to realize that having a child with Down syndrome is an enriching and rewarding experience. It’s more “ordinary” than we initially feared. On another level, parenting a child with a disability in an ableist world draws you, whether you like it or not, into the role of advocate. You become aware of forms of bias and discrimination you didn’t realize existed, and now must navigate a world that simultaneously accommodates but also stigmatizes and excludes your child. In this sense, an ordinary future is aspirational, an ongoing effort to build a world where your child is accepted for who they are and not marked as different.

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Thomas W. Pearson is a Professor of Anthropology and Chair of the Social Science Department at the University of Wisconsin–Stout. An Ordinary Future: Margaret Mead, the Problem of Disability, and a Child Born Different is published by University of California Press. @AnthroPearson.