That language is jarring to 21st-century ears and ethics, as are the methodologies: trawling at public schools, reform schools, and state institutions for research subjects, or traveling the streets of Baltimore to collect samples. Keep in mind, this was before standardized HIPAA, or codified informed consent and institutional review boards. But for atypical humans like my brother, McKusick’s approach was turning perceptions away from spectacle. He repudiated older moral judgments that hereditary afflictions among children were the result of parental vices or failings. McKusick and his colleagues replaced this 19th-century narrative of parental sin and genetic retribution with an equally powerful yet morally disinterested clinical gaze.
Eventually my brother was among those collected. When he was diagnosed, Steve’s narrative about himself began to change. Having a genetic condition transliterated physical eccentricity into affliction, a rare genetic case. This wasn’t an inconsequential semantic matter, either for Steve, who had a life to navigate, or for McKusick, who had an ambitious new field of knowledge to advance against the indifferent and skeptical. Being physically atypical means you’re going to be looked at—it’s only a question of how (imagine never being able to blend into a crowd or be physically anonymous when you want to). McKusick tried to ensure that his patients were looked at in a particular way. For him, humans were not normal or abnormal; they existed on a continuum. He deliberately spoke of “instructive” cases, not “interesting” cases—the former emphasized a clinical sensibility; the latter, something closer to carnival freak shows.
But doctors, and medicine, enjoyed a great deal of power and latitude all the same. In the 1950s, doctors were at the height of their cultural mystique and authority, and my mother delivered Steve into their arms on the expectation of merciful omnipotence. McKusick’s medical genetics course at Hopkins included the study of Baltimore families with hereditary disorders. For one assignment, he instructed, “students may wish to call in children who are affected with the Marfan syndrome. … The primary purpose would be to compare the growth characteristics of this group with normal data and with their normal sibs.” Steve was among the children summoned, and one day, he and our mother stood center stage in an amphitheater, where doctors pointed out to other doctors the physical traits of Marfan. “I didn’t realize there would be so many people,” my mother recalled, and she was intimidated—but compliant. It didn’t occur to anyone involved to question the psychological wisdom of this exhibition. My mother remembered only that “they kept talking about how long Steve’s arms were, and pointing.” My brother wasn’t presented as a carnival freak or the incarnation of parental sin but as a medical genetics subject, and that difference must have mattered—being gawked at and being studied can’t possibly feel the same. But neither can they feel entirely different.