Downs: The History of a Disability by David Wright (review)

Downs: The History of a Disability by David Wright traces the Syndrome from the European medieval period through to the discovery of Trisomy 21 in 1959 and into the present time. While the book incorporates material from many different countries in 239 pages, any limitations in length do not impede the author’s nuanced analysis. Indeed, the book is a poignant account of the advances, paradoxes, inhumanity, and humanity that mark the history of Down’s Syndrome. Framing this history as more than a mere straightforward trajectory of progress, Wright complicates assumptions of improvement in regard to both medical/scientific technology and social attitudes, and shows the history of Down’s and its status in present-day society to be riddled with ambiguity, uncertainty, and irony. Raising issues both complex and troubling, Wright offers critical insight into the Syndrome and encourages reflection on a fundamental humanistic and bio-ethical question: What is the value of a human life?

Wright deconstructs the articulation and development of Down’s and its various appellations as a distinct disease entity over several centuries. In so doing, he presents the Syndrome as not simply a medical diagnosis, but a cultural phenomenon reflective of social attitudes and medical theories and shaped by cultural forces. Beginning with a “pre-history” of Down’s and the debates on the legal status of “idiots” under English Common Law, Wright argues that the Crown’s early preoccupation with distinguishing and defining mental disabilities was linked to property. The King’s Prerogative of the thirteenth century differentiated the “natural fool” (a permanent “idiot” from birth) from the lunatic (one who had lucid moments); in the former case, the individual’s property would be the Crown’s possession until his/her death, whereupon it would be transferred to an heir (p. 19). Only in eighteenth century did mental impairment attract attention in the realm of medicine, but, as Wright demonstrates, growing concern should not necessarily be interpreted as indicative of progress or improved status for individuals with Down’s. Without negating the realities of what may have preceded it, Wright reminds us that medical care entailed segregation, institutionalization, and experimentation for many with Down’s in the nineteenth and twentieth centuries. Such “treatment” was often predicated on views of the intellectually disabled as not only inferior, but also threatening to greater society. At various times, Down’s would be associated with racial reversion, hereditary degeneration, syphilis, or alcohol consumption, and subjective views shrouded in “science” determined whose rights, and whose lives, would be valued.

From the 1860s when John Langdon-Down presented the term Mongolism to the mid-twentieth century when the chromosomal trisomy was discovered, a racist veneer tainted understandings of the Syndrome and a link between abnormal physiognomy and mental disability was established. Down’s formulation presented the Syndrome as atavistic and a form of racial reversion, ideas that would become connected to the theory of degenerationism. The popularization of term “simian crease” – a single crease running horizontally across the palm – and its association with primates contributed to the view that Mongolism represented a degenerative, primitive form of humankind. “Mongoloid Idiocy” eventually became one sub-category under the rubric of “feeble-minded” (p. 94), a broad term used by eugenicists and reformers in the early twentieth century. Wright discusses how intelligence testing was seized upon by eugenicists as a purportedly “scientific” and “objective” means of determining mental deficiency and, combined with a growing fear of social degeneration, over-crowding in asylums, and ideas of “racial betterment,” it would be used to justify the practice of sterilization in many countries. While the body of historical studies on eugenics is substantial, Wright helps to break-down the broad category of “feeble-minded” by focusing on Down’s Syndrome, and further touches on why some regions implemented eugenic programs while others, including New Zealand and Australia, were more hesitant.

Although sterilization continued both overtly and quietly in many jurisdictions following the Second World War, Wright highlights the important changes...