The 20th century was a time of unparalleled innovation and discovery, with great progress in science and technology, especially the practice of medicine. So it was both shocking and humbling when, in the final quarter of the century, the world had to face up to the fact that there was a new disease ravaging populations, Acquired Immune Deficiency Syndrome (AIDS), that had no known cure. The human race may have seen tremendous progress but human nature hadn’t kept up. There was still misunderstanding and often irrational fear about AIDS and its victims, especially since the disease was spreading most viciously among gay men and intravenous drug users.
An early response to the AIDS crisis was the improved monitoring of this nation’s blood supply (it was once common to find commercial blood banks operating in Skid Row sections of cities, drawing blood from down-and-out donors for five dollars a pint). Treatment intended to save life could cause a fatal disease. Uninformed attitudes were reflected in a falloff of healthy people donating blood to recognized blood banks.
It was probably a contaminated blood product that ravaged the immune system of a boy from Cooperstown, NY named Henry Nicols. Henry was born with hemophilia, a lack of clotting factor in the blood. His childhood was beset with the bumps and bruises normal to an active boy and his parents and sisters learned to care for him and came to see his condition as “more of an inconvenience than a disability.” Hemophilia is not a terminal illness. But sometime before Henry was ten years old he became HIV-positive from a blood transfusion.
Initially Henry’s father was the only one in the family who knew about his condition. There had recently been the case of Ryan White, the HIV-positive boy from Indianapolis who had been refused permission to return to school. In a small village like Cooperstown word of Henry’s condition would spread quickly. But the family secret became known to a few friends, while Henry continued to live the active, often incautious life of a typical adolescent, including working to attain the rank of Eagle Scout.
As a community service project in support of the Eagle badge Henry developed a project to inform people about AIDS. His efforts would place him onto an international stage. Henry became a celebrity – his family even hired a public relations adviser. He met at the White House with two Presidents of the United States, testified before Congress, appeared on magazine covers and in an HBO documentary. His speaking tours took him as far as Japan. (He was also a guest onWSKG-TV’s “Direct Line” program in September, 1991).
Henry was a handsome, eloquent, playful guy during his late teens and early 20s and he changed many attitudes about people with AIDS. But his condition deteriorated, even to showing signs of dementia. His drug regimen was so heavy that he was allowed to occasionally halt his medication. Feeling stronger during a respite from drug treatment Henry was driving into Cooperstown when he ran his car into a tree. His injuries were massive and he died on May 8, 2000.
Asked what he wanted to do with his life Henry said that he’d like to run for President. This year he would have turned thirty-five, old enough to meet the Constitutional age provision. Instead, we have a loving and unblinking biography entitled “Henry for President”, written by his father, Hank Nicols. It is the story of a family, a community and of a health and human crisis that still plagues the world.
Hank Nicols now teaches internationally for SUNY College at Buffalo’s Graduate Program. He was formerly police chief of Cooperstown and a commissioner on the Otsego County Board of Elections. He is also newly-chosen president of the Otschodela Council of the Boy Scouts of America, continuing a 50-year involvement with the Scouting movement.
Hank Nicols joins Bill Jaker on OFF THE PAGE to discuss Henry’s life and work and the challenge of writing about his son.