Reflections: A Conference on Children and “Imperfection”

Cross-posted from Adam Turner’s personal website and the Centre for Medical Humanities, University of Leicester, blog.

Over the past weekend, I had the pleasure of participating in the Centre for Medical Humanities Imperfect Children conference at the University of Leicester. The conference included a wonderful mix of disciplines and both historical and present-day perspectives on the concept of “imperfection” and children. This usefully provocative focus led to an ongoing discussion during the two-day meeting about the definition of imperfection and how it relates to concepts like normality, health, and ability. I live in the northwest corner of the United States (about 4,700 miles away from Leicester), so I had a fair bit of time to think about these questions on my way home.

A VARIETY OF PERSPECTIVES

I knew from the moment of the first talk, in which Will Southwell-Wright (Durham University) discussed physical difference in Roman Britain using archaeological evidence, that I’d be out of my area for much of the conference. But this is one of the things I love about medical humanities. Its interdisciplinary nature offers the chance to discuss topics from a variety of perspectives and methodologies. It also forces me to do the hard work of explaining why my work is relevant on a scale beyond its historiographic importance.

During the conference, attendees heard perspectives on “imperfection” and children spanning from the first to the twenty-first century. Papers by Claire Trenery (Royal Holloway University), Anne Bailey (University of Oxford), Ally Crockford (University of Edinburgh), and others explored the various ways “imperfection” has been constructed, depicted, and defined using sources such as English miracle accounts from the 12th and 13th centuries and 19th- and 20th-century fiction. Other talks, including David Wright’s (McGill University) keynote, “Club Feet and Cleft Palates: The Surgical Search for Childhood Perfection at the End of the Nineteenth Century,” and Simon Strick’s (Humboldt-Universität zu Berlin) paper on surgery and craniosynostosis, focused on efforts to “correct” imperfection.

Other presentations, such as Susan Schweik’s (University of California, Berkeley) about television programming on disability in the 1950s and 1960s and Sophya Yumakulov’s (University of Calgary) on constructions of ability in the New York Times since 1851, looked at media representations of “imperfection.” Two panels on the second day focused on more modern efforts to use science to prevent “imperfection.” These ranged from Shannon Conley (Arizona State University) discussing the challenging policy issues surrounding pre-implantation genetic diagnosis (PDG) in the UK, to a talk by Jan Macvarish (University of Kent) on continuing efforts to biologize parenting using neuroscience, to my own paper on the early history of genetic counseling in the United States.

“IMPERFECTION” AND “NORMALITY”

As Claire Trenery discussed in her conference post, much of the discussion during question periods tended to return to the very definition of “imperfection” and its relation to ideas like normality and health. Other questions included:

• Is the opposite of imperfection, perfection?
• How does the definition of imperfection change over time, place, and perspective?
• Is there a difference between “imperfection,” “abnormality,” and “disability” or “impairment”?
• How do these definitions change as conditions become identifiable (like the discovery of Down syndrome as a trisomy) or remediable?
• Does society seem to need some people to be “imperfect” in order to make everyone else “normal”?

My own thinking — what occupied me for much of my flight home — kept returning to the question of perfectibility and the line between socially “acceptable” vs. “unacceptable” difference that seemed to hover around definitions of imperfection.

One of my questions is: is perfection actually the goal, or do people tend to perceive “perfection” in much the same way they do “imperfection,” as somehow uncanny or unnatural? Here I’m reminded of the concept of the “uncanny valley” in robotics and gaming, or the creepiness of the “perfect wives” in The Stepford Wives.

It would seem that, in many cultures and in many times and places, complete perfection is itself an imperfection. So what does it mean to describe someone as perfect or imperfect, then? I would suggest that perfection and imperfection are ingredients; they are components in the definitions of normality and abnormality, but they aren’t synonymous with them.

The expectation, perhaps, is for people to deviate from perfection in predictable, socially expected (and accepted) ways. Maybe the aggregation of acceptable deviations from the norm becomes the definition of “normal.” Perhaps “normal” is whatever “passes” as such.

This is, of course, only a hypothesis. And it presents many more questions: how are definitions of acceptable difference created? How do they change over time? Who or what influences how these definitions evolve over time? These questions can’t be readily answered, but they’re important to grapple with because they highlight the historical construction of definitions we tend to think of as static or “natural.”

Scholarship in areas like history, literature studies, political science, sociology, anthropology, as well as the so-called “hard sciences,” can all contribute to this process of exploring the definition and redefinition of “normality.” Sarah Igo, for example, describes one element of the process of defining and describing norms in her 2007 monograph, The Averaged American: Surveys, Citizens, and the Making of a Mass Public (Cambridge, MA: Harvard University Press). She points to the development of polling and other forms of social measuring as part of an attempt to define the “average” American in the 20th century.

Many of the Imperfect Children presenters also addressed this process of creating, changing, and challenging the place of imperfection in the definition of “normal.” Clair Sewell (University of Warwick), for example, discussed how individuals affected by thalidomide worked through advocacy and support groups to define themselves as normal with, rather than in spite of, their “imperfections.” One individual wrote: “I’m me as I am. I wouldn’t be me with arms, would I?”

CONTINGENCY AND THE IMPORTANCE OF THE DISABILITY RIGHTS PERSPECTIVE

The degree to which imperfection leads to “abnormality,” then, remains both historically and individually contingent. It varies significantly based on the standpoint of the individual making the assessment of “normal” or “abnormal.” As Ally Crockford’s and Sandra Dinter’s (Universität Bielefled) talks on literary constructions of imperfection suggested, it depends on who does the narrating.

This issue manifests in my own work as I consider what constituted acceptable levels of difference (imperfection) for prospective parents and for genetic counselors in the mid-20th century. Exploring the sorts of conditions genetic counseling clients — in this case would-be parents — identified as problems helps us trace the movement of lines between difference, disability, and disease over time. It reminds us that these lines are not static, but rather influenced by a host of social, medical, and emotional factors.

Why does this matter? Primarily because it highlights the fact that present-day notions of imperfection, disability, and normality are not static, timeless categories — they’ve shifted over time and they continue to vary from person to person today. This understanding powerfully undergirds the disability rights perspective when it comes to things like PGD, genetic counseling, and abortion. It’s also relevant in considering other individuals in society who have had to deal with being medicalized or defined as unacceptably different, such as with LGBTQ, intersex/DSD, and transgender individuals.

As Simon Strick pointed out during the conference in one rather heated exchange over the ethics of “correcting” difference, it’s crucial to include as many perspectives as possible in these debates and to give significant weight to the voices and opinions of the people who fall outside what society has deemed to be “normal.” Even then we’re unlikely to find definitive answers to the sorts of questions raised during this past conference. But the issues aren’t getting less complicated. It is vitally important that we have these debates as openly and compassionately as possible, and with a full understanding of just how fluid “normal” can (and should) be.