Going to Great Lengths

The New York Times Magazine , August 30, 2003

The Food and Drug Administration recently approved a new use of biosynthesized human growth hormone: treating unusually short children who don't have any other known disorder. In clinical studies the drug, which is called Humatrope and made by Eli Lilly & Co., added several inches to kids' eventual height, without producing any significant health risks. Humatrope, in other words, met the regulatory tests for safety and efficacy. But bioethicists greeted the decision with protests.

"We will start to treat the normal as a disease," Arthur Caplan of the University of Pennsylvania told The Washington Post, adding that "Whenever you take people on the low end of a distribution curve and say they have a disorder, you've started down a slippery slope." It does seem ridiculous to treat otherwise healthy short people as disabled. A man who's 5'3" or a woman who's 4'11", the standard in the clinical trials, is hardly in the same position as someone who can't walk or see.

But being short does, on average, hurt a person's prospects. Short men, in particular, are paid less than tall men. The tall guy gets the girl. The taller presidential candidate almost always wins. And many parents desperately want Humatrope for their short children - not to treat a "disease" but to make their kids' futures more pleasant. These parents care more about the real stigma of being short than the theoretical stigma of calling shortness a disorder. If adding a few inches means accepting a medical diagnosis of excessively small stature, they'll do it. Why quibble about definitions?

One reason, of course, is insurance, which covers "diseases" but not discretionary treatments. If every new cure defines a new disease, the argument goes, the insurance system will eventually crash. But insurance doesn't have to cover everything. Contracts can exclude care that, while life-enhancing, isn't essential. Most insurance doesn't cover Lasik eye surgery, even though the surgery cures myopia. Near-sighted people find other ways to pay for it, just as they pay for cars and computers. Insurance is a matter of contract law, and subject to competition and consumer demand. The system is hardly perfect, but over time, health insurance policies tend to adjust to what people want and what they're willing to pay.

The deeper dispute is cultural. We think some biological phenomena deserve treatment and sympathy, and others don't. If you have chronic migraines, we'll help. If you're ugly, too bad. If we say that being short is treatable, and offer medicine to change that biological fate, then we're saying there's something wrong with being short.

We need a new, less pejorative category: "biological conditions we don't like." Not diseases or disabilities, simply dislikes - conditions that keep us from being who we want to be. We can treat dislikes without shame. Or we can leave them untreated without entitlement. Otherwise, we will label everything we don't like a disease, no matter how absurd the consequences. The law is already headed in that direction.

Consider a complaint filed by the Equal Employment Opportunity Commission in March, charging an Alabama McDonald's franchise with violating the Americans With Disabilities Act. The restaurant had refused to let Samantha Robichaud, whose face is almost entirely covered with a "Port Wine Stain" birthmark, work the front counter.

Robichaud had held other jobs in the restaurant, but promotion to management requires experience in every position. The EEOC alleges that she was told she'd never be promoted because of her appearance. "I had been told I might make babies cry or scare customers off," Robichaud told the Tuscaloosa News. She said she suffered no other physical impairment.

"The opportunity to make a living and succeed in the workplace is not restricted to models and movie stars but is the promise held out to every person with talent, skills and ambition," said Charles E. Guerrier, regional attorney for the EEOC's Birmingham office. The case hasn't yet reached the fact-finding stage, but Robichaud's lawsuit is a classic example of "hard cases make bad law." The EEOC is using a sympathetic client to outlaw a perfectly natural, if unkind, phenomenon: preferring good-looking employees to unattractive ones, particularly in customer-service and sales jobs.

The agency is effectively trying to define ugliness as a disease. Looks are, after all, a biological condition. But so, to some extent, are intelligence and personality. So, to some extent, is every trait that distinguishes one person from another. At the end of this slippery slope is a rule that says that the only fair way to choose employees is by random draw. Nobody wants to go down that road.

Better, then, to rethink the way we've conflated medicine and moral judgment. Biological fate doesn't just give us disabilities and disorders. To a large degree, it gives us who we are. Our bodies are us. Yet our inner selves do not always match our physical forms. Our bodies impose definitions and limitations that falsify our identities and frustrate our purposes.

Writing about her own and other people's experiences with plastic surgery, the author Joan Kron refers to "those of us who feel misrepresented by our faces." Those false faces are not diseased, disordered or disabled. But that doesn't mean we don't want the power to change them.