I am floored by this article in today’s New York Times: a sensitive profile of an episode I had never heard of, and one that calls a lot of feelings about medical ethics into mind.

For over 40 years, during a period - 1903 - 1940s - when care of premature infants in the US lagged far behind that in Europe and facilities were extremely limited, a crusading doctor provided free incubator care to over 8,000 preemies in New York, saving over 6,500 lives . . . by putting them on display in the carnival sideshows of Coney Island.

The babies were lined up under heaters and they breathed filtered air. Few of them weighed more than three pounds. They shared the Boardwalk there on Coney Island with Violetta the Armless Legless Wonder, Princess WeeWee, Ajax the Sword-Swallower and all the rest. From 1903 until the early 1940’s, premature infants in incubators were part of the carnival.

It cost a quarter to see the babies, and people came again and again, to coo and to gasp and say look how small, look how small. There were twins, even, George and Norma Johnson, born the day before Independence Day in 1937. They had four and a half pounds between them, appearing in the world a month too soon because Dorothy Johnson stepped off a curb wrong and went into labor.

All those quarters bought a big house at Sea Gate for Dr. Martin A. Couney, the man who put the Coney Island babies on display. He died broken and forgotten in 1950 at 80 years old. The doctor was shunned as an unseemly showman in his time, even as he was credited with popularizing incubators and saving thousands of babies. History did not know what to do; he was inspired and single-minded, distasteful and heroic, ultimately confounding.

He certainly knew what a . . . well, a sideshow he was making of these children. (Their parents agreed to their being displayed because they had no other facility that would take them, or that they could afford.) He apparently intended the freakshow as a challenge, to shame the medical community into providing more services. But it went on for 40 years. He took the show to the Chicago World’s Fair, and toured it around the country. He also employed a European-trained nurse, and paid lactating women for breast milk for the babies. And he saved 6,500 lives.

There’s a lot that could be said about this. The obvious points about principles-vs.-practical-ends are too familiar to bother with. The questions it raises about professional responsibility, about using patients in such an exploitive way for such a good end, about taking advantage of the families’ desperation, about the dedication and also the exhibitionism that must have suggested this plan to Dr. Couney, about the (unrealized) ideal that drove him and the much more mundane (and better-achieved) financial benefit it offered, are significant: all these issues must be confronted before we can say we understand this strange man and his strange project.

But most immediately, I am struck by this overlapping of the idealized and the freakish, the high-minded ambitions of medicine as we conceive it and the low-minded grit of the midway as it is, and the seeming incongruity of the two together. A pet idea I have been incubating (ha!) for some time is the impossibility of coherent distinctions between “real” healthcare and the varieties of goals and desires that people bring to the handling of their own bodies. I have slowly been growing disillusioned with “the definition of disease”, feeling that the concept itself seeks to impose a barrier that can only be arbitrary between what is rightly within the purview of the healing professions and what is properly outside them - a distinction that is more and more made mock of by the simple reality of what people actually do every day, using whatever knowledge and technologies avail them, to their bodies and even their minds. In an age of “cosmeceuticals”, of mood enhancers, of extensive body-adornment and body-modification ranging from tattoos to piercings to tongue-splitting to polymer boobs of freakish proportions, of hair implants and depilation and skin peels and collagen and “Dr. Z, MD” the New York state-licensed fruit-acid exfoliant emperor, any claim about what is “proper medicine” and what is “cosmetic” invites a horselaugh. To hear, now, of a doctor, apparently dedicated to doing “real” medicine in its traditional fashion, who found he could best do so only in an actual freakshow, seems to me no more than an almost amusing presaging of the day - today - when real medicine is a freakshow . . . and properly so.

[H]alf a century after his death the so-called Incubator Doctor has found acceptance among the Boardwalk’s latter-day boosters. Yesterday, his legacy went on display, among 11 impresarios, inventors, builders and performers inducted into a new Coney Island Hall of Fame.

[Link via Boing Boing.]