HUMOR

The Price of Equality

by Mike Ervin

From New Mobility, February, 2004. Reprinted with permission of magazine and author.

I've been following with great interest the case of Michael Small of Gatorville, Fla. As you probably know, his case has become the symbol of the emotional debate over how far society should be expected to go to preserve life.

A federal judge recently ruled that all nutrition and hydration for Michael Small should be discontinued because he is in a "persistent vegetative state." Of course there are some, as there always are, who argue that Small's condition does not fit the commonly accepted definition of a persistent vegetative state. They point to the fact that not only is he fully conscious but he also breathes on his own, talks, zips around town in a motorized wheelchair, drives an adapted minivan, enjoys a rigorous sex life and chairs the department of anthropology at Northern Florida University. They've even circulated a highly controversial video that they claim clearly shows Small responding to a visit from his two young nieces by making them grilled cheese sandwiches and driving them to Disney World.

But on the other side of controversy are several doctors, bioethicists and leaders of death with dignity advocacy organizations such as the Society for Compassionate Asphyxiation and Exit Smiling. They dismiss Small's cooking, driving, prancing around Disney World and lecturing at symposiums around the world as mere "reflex." They point out that Small was born with cererbral palsy. He can't walk and he even sometimes drools. And his condition isn't likely to improve. In Florida this means he is in a persistent vegetative state.

Indeed, Florida does indeed have the nation's most liberal burdenship law. People can be considered to be PVS if they use a wheelchair, if they are deaf, blind, depressed, missing a limb or portion thereof, make less than $12,000 a year or vote for Democrats.

But the testimony that sealed Small's fate came from a New York cabbie named Arnie. Arnie testified that he once picked up a guy named Joe, whose sister's boyfriend's landlord's mechanic once changed a tire for his pharmacist's nephew, whose godmother's neighbor thought she once overheard Small say if he ever became a burden, he wanted to die. Equally damaging was the testimony of Seymour, Small's pet parrot. Among the phrases Seymour rattled off in court were, "I'm a pretty bird" and, "If I'm ever a burden, I want to die." Since Small and Seymour lived alone, where else could the bird have heard it?

As soon as the judge officially declared Small a burden, state police were dispatched to Small's home with a search warrant for food. They emerged with several full grocery bags. They also removed all potentially edible items, such as houseplants, soap and carpets. His plumbing was turned off.

The judge also notified all stores and restaurants not to sell or deliver food to Small.

But on the fifth day of Small's starvation, Florida governor Jeb Bush saved Small's life when he pushed through the state legislature the narrowly tailored You Can't Starve to Death Anybody Named Michael Small Who Has Cerebral Palsy and Owns a Parrot Act of 2003. Small immediately ordered a pepperoni pizza.

But the constitutionality of the law is being challenged by lawyers from the ACLU, the American Cripple Liquidation Union. That's where it stands now, with Michael Small hanging in legal limbo.

Many disability activists have passionately denounced what's happened to Small as a frightening example of the continued erosion of our basic human rights. But I'm not too worried about it. Maybe the courts have abandoned us, but we've still got Jeb Bush looking out for us.

I think a fair compromise would be to grant Small a six-month grace period to see if he can improve his condition. I hear that neurosurgeons at Johns Hopkins University have found a new treatment for the prevention and control of drooling. It involves cutting away a portion of the cerebral cortex and replacing it with a small satellite dish. When the person begins to drool, a beam is transmitted to the dish from an earth-orbiting satellite which somehow temporarily paralyzes the salivary glands. Don't ask me how it works, but it does. And the mortality rate from the surgery has been reduced by nearly a third.

Then Michael Small might be able to convince the judge that he is at least trying to do better. And maybe the judge will have mercy. Or maybe not.  It's all so morally complicated.

Mike Ervin is a Chicago-area writer, disability activist and co-founder of Jerry's Orphans.

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