Uncle John's Bathroom Reader Golden Plunger Awards (29 page)

In 1999, Kari Stefansson, a Harvard Medical School professor and native Icelander, founded a corporation called deCODE to collect and study Icelanders’ DNA data. Stefansson thought that careful study of Icelanders’ genes would give medical science an unprecedented chance to work backward and unravel the roots of illnesses like heart disease and cancer. Syndromes could be charted
back through families and their causes might be more easily identifiable.

To complete his project, Stefansson made a remarkable deal with the Icelandic government: The government promised his company access to the nation’s health records and he promised that the population would cooperate in the study, though people who did not want to take part could opt out under a special clause in the contract.

The deal quickly started to smell fishy to Icelanders. Giving a single company control of an entire nation’s health records seemed suspect to people outside of Iceland, too, who recognized that this deal could have privacy implications for other societies and countries around the globe.

Many people in Iceland did sign up for the study (about 135,000 adults), but they also opted out in large numbers. Stefansson’s company tried to bounce back, saying that deCODE would fund drugs for citizens whose DNA indicated predisposition to things like heart disease. However, when a woman named Ragn-hildur Gudmundsdottir not only blocked deCODE from her health records but also her deceased father’s records, the tempest became more serious. Iceland’s supreme court finally ruled that the database Stefansson was trying to create was unconstitutional because it did not adequately protect personal privacy. Eventually, the project was completely scrapped, and in 2004 the Icelandic government finally ruled that the entire deCODE project was a violation of privacy rights.

The Icelandic DNA saga may be at a temporary halt, but its narrative has a lot to say about how we are going to obtain, track, store, analyze, and protect genetic information. Deciding to whom DNA belongs is tricky. For example, a parent may donate a tissue sample from a desperately ill child, hoping that a cure will be found, only to discover that that tissue sample is being held hostage by a hospital trying to get more money for its research (as happened in 1998 at Miami Children’s Hospital with a gene for Canavan disease).

Because even the smallest snip of DNA contains every bit of information about what makes you . . . well, you, . . . its storage can have widespread implications. As science and technology progress, it may also have even more serious consequences.

Someday, someone—or, more likely, some company—may own your DNA. Patents on genomes will no longer be the stuff of science-fiction novels, but of common court battles. Iceland’s pure DNA has given us a glimpse at the implications of both future scientific breakthroughs as well as personal privacy issues..

After he graduated from college, the future looked bright for Toole. He had earned a master’s degree in English literature from Columbia University and then became a professor, first at the University of Southwestern Louisiana and then at Hunter College in New York. After being drafted into the military in 1961 at the age of 23, he even had ample time to work on his novel, which he called
A Confederacy of Dunces
after the line by Jonathan Swift:

Toole began working on a draft of the book while stationed in Puerto Rico, where he taught English to Spanish-speaking recruits. When his time in the Army was over, he moved back in with his parents and began teaching at St. Mary’s Dominican College in New Orleans, completing the novel in his spare time and hoping to get it published.

The book follows New Orleans resident Ignatius J. Reilly—who gets arrested in the first few pages—as he searches for a job, finds one, makes a mess of it, and moves on to another job. Like a series of falling comic dominoes,
A Confederacy of Dunces
sees one outrageous event lead to another. All along, the obese (and gassy) Ignatius works on his own book of comparative history—hilariously
drawing conclusions from modern life—and writing letters back and forth to a woman named Myrna, whom Ignatius can’t stand (her views are the opposite of his on almost everything) but also can’t help but love.

Particularly interesting is the relationship between Ignatius and his doting and long-suffering mother. They spend much of the novel driving each other crazy—but always to comic effect.

After his stint in the Army, Toole should have been on top of the world. His writing was going well, he was smart, and his teaching career showed great promise. But something wasn’t right.

Although he was a popular teacher at New Orleans’s Dominican College, he was still living at home, supporting his parents, and dealing with his domineering mother. He had what he felt was a great unpublished book on his hands, and an editor at Simon & Schuster showed interest in the work but also seemed reluctant to commit to its publication. After two years of revisions and conversations, the editor still thought the book needed work before it could be published. At the same time, Toole was struggling with sexual identity issues. He felt trapped in the closet and repressed by his family and the views of society at large. He was becoming further removed from the world around him.

In early 1969, Toole and his mother had a huge fight. This time Toole left town. He drove to California, then to Georgia to visit the home of one of his literary heroes, the late author Flan-nery O’Connor. He’d been away from New Orleans for just two months but had gotten progressively more depressed. Then, on March 26, 1969, in Biloxi, Mississippi, Toole stopped on an isolated road, ran a garden hose from his car’s tailpipe into the driver’s side window, and sat back. It was the end for Toole, but it was just the beginning for
A Confederacy of Dunces
.

Thelma Toole waited until after her husband died in 1974 to continue her son’s attempts to get
A Confederacy of Dunces
published. From that point on, she worked tirelessly in her mission, taking it to publisher after publisher and racking up rejection notices.

When she noticed that Southern author Walker Percy was giving a writing seminar in town, Thelma took the manuscript and thrust it at him. Percy had published three novels by then, and he was used to reading bad manuscripts from people who thought they deserved to be published. In this case, however, the manuscript was good, and he was hooked almost immediately. Percy’s help got the novel published in 1980 by Louisiana State University Press. At the end of his foreword to the book, Percy wrote:

Almost immediately, the novel received massive acclaim. Critics praised it with fervor, in particular because of the heart-tugging story behind its publication: a mother who fought desperately for years to get her deceased son’s legacy into print.

Years later, Joel Fletcher, a friend of both Toole and his mother, wrote about the story behind the publication of
A Confederacy of Dunces
in his own book,
Ken & Thelma
. (“Ken” was a familiar nickname for John Kennedy Toole.) He noted that Thelma loved the spotlight and had her own desire for fame and acclaim. While she always maintained that her work to get the book published was done out of love for her son, Fletcher’s work suggests there was far more to it. Perhaps the domineering mother still wanted control.

It’s hard to say what the truth is behind the troubled and complex dynamic of this mother and son. What can be said, though, is that Thelma Toole, who died in 1984, lived long enough to see two milestones pass after her son’s death: the publication of his master work and its receiving the Pulitzer Prize in 1981. Today, there are over 1.5 millions copies in print in more than 18 languages. An executive at 20th Century Fox has spent 27 years attempting to get a movie version made. Even Ignatius J. Reilly would be proud of those accomplishments.

Benedict Arnold

At the start of the Revolutionary War in 1775, apothecary Benedict Arnold of New Haven, Connecticut, was a captain of the colonial militia and devoted to the cause of America’s freedom. Between 1775 and 1777, he managed to accomplish some astonishing feats: He fought at the Battle of Lexington and Concord, attacked and secured Fort Ticonderoga, made the first amphibious assault in American history, and so brilliantly planned the Battle of Saratoga that a contemporary called him “the very genius of war.” Even more, Arnold fought and led his men through some of the most treacherous terrain in North America, scaling cliffs, negotiating rapids, and enduring famine so terrible that some soldiers ate their leather moccasins.

Yet of each of Arnold’s victories was tinged with failure, and his intelligence and bravery were matched by impulsive, self-serving behavior: Arnold raced Ethan Allen’s Green Mountain Boys to Ticonderoga in 1775, for example, so that he could claim that victory, but then he submitted an inflated expense report for the venture.

In the middle of the struggle at Saratoga, American commander
General Horatio Gates relieved Arnold of his command, partly for insubordination and partly because Gates considered him a “pompous little fellow.” Arnold charged into battle anyway, “conveniently ignoring the fact that he had no official command,” wrote one historian. The sight of Arnold on horseback reinvigorated the troops, who fought back so hard that the British collapsed.

Arnold’s actions also directly led to securing French aid that helped speed the infant United States to victory. There’s even a memorial to Benedict Arnold’s . . . er, leg at the Saratoga battlefield. It is a sculpted left leg, elegantly booted, standing by itself on what appears to be a cannon, with a brief inscription: “In memory of the most brilliant soldier of the Continental Army who was desperately wounded on this spot . . . winning for his countrymen the Decisive Battle of the American Revolution and for himself the rank of Major General.”

In spite of his insubordination, General George Washington, who thought of Arnold almost as a son, rewarded the man and appointed him commandant at Philadelphia in July 1778. However, in Arnold’s triumph were the seeds of discontent and deceit. He’d been wounded at Saratoga (in the leg . . . the reason for that odd monument), and that fueled his self-pity and anger.

Arnold had become bitter, especially toward Congress: he felt he should have been promoted higher and faster. In Philadelphia, he also became a social butterfly, and met the woman who became his second wife and was a catalyst in his downfall.