By the time the old man was finished talking at the White House that day -- about the government's notorious Tuskegee ** syphilis study, about the poor black farmers who suffered because doctors betrayed them, about love and forgiveness -- a roomful of dignitaries was standing, applauding, and the president of the United States was wiping his eyes.
And Herman Shaw, an Alabama farmer who believed in his government when he enrolled in the Tuskegee study in 1932 and who believes in his government still, was on his feet, his arms spread wide, as if to enfold the room.
On that day last May, the president had said he was sorry. Shaw gave thanks.
"In my opinion," he said, his voice low and even, "it is never too late to work to restore faith and trust."
Today the Tuskegee study stands for the arrogance of science, for the inhumanity that can overtake research, for the pain that results when medicine tosses aside ethics. Its legacy is bitterness and suspicion.
"To this day," Vice President Gore said at the White House, "the Tuskegee study makes some Americans think twice about donating blood, or taking their children for vaccinations, or signing an organ donor card."
But Herman Shaw, 95, and the seven other survivors of the Tuskegee study are not bitter. Where they could have turned their backs, they opened their arms. Where they might have preached anger, they taught reconciliation. When the government offered an apology, 65 years late, they stood with grace and accepted.
"Herman Shaw is a window into some of the best things in our country," says Dr. Stephen Thomas, director of the Institute for Minority Health Research at Emory University, "even though he emerges from one of the worst things we've ever done.
"His is a story of redemption. It's a story of hope. It's a story of
"I am an American," Shaw says, "true-born, red-blooded American. And I live in America, and I want to live in peace and harmony. How can we love the Lord, whom we've never seen, and hate our fellow men, whom we see every day? I want to get along."
It has been 25 years since news accounts of the Tuskegee Study of Untreated Syphilis in the Negro Male horrified Americans: Government doctors spent 40 years watching the disease progress in nearly 400 poor black men -- never telling them they had the disease and withholding a cure when it was discovered in the mid-1940s.
Amid the outcry in 1972, the study was halted. The next year, Congress convened hearings. Shaw took his first trip to Washington to testify before Sen. Edward M. Kennedy's
"He said, 'You were a guinea pig,' " Shaw recalls. "I said, 'No, Senator, we were all grown men. I think they used us for guinea hogs.' "
That was in 1973, at the end of the story.
The story begins in Shaw's rural Alabama at the start of the century.
There, sharecroppers -- among them former slaves -- scratched out a subsistence on little patches of land. Poor black farmers were as likely to find themselves at the White House as in a spaceship to the moon.
Illiteracy rates were high. Incomes were pitiful. Malnutrition was common. Just down the highway was the proud Tuskegee Institute, founded by Booker T. Washington to educate black students. But the rural counties were heartbreakingly poor, and sending children to college was beyond most families' dreams. Sons and daughters were expected to stay on the farm.
Yet there were solid, Bible-reading families and people who took pride in working hard and caring for their own. So it was with Shaw, who wanted to go to college but who stayed on the farm because his father asked him to.
He was born in Tallapoosa County, Ala., near the town of Tallassee, in 1902. His father, Frank -- "a church-going man; apparently some of that rubbed off on me" -- was a farmer with a third-grade education. Shaw has no memory of his mother, Eliza Bickerstaff Shaw, who died when he was 3.
The family crops included cotton, and Shaw remembers the year his father ginned 31 bales. They brought about $20 each.
There was no money for extras, but the family always had enough to eat, Shaw says, which set them a bit above some of their neighbors. "I never went hungry, not until the Hoover administration," when the Depression seized the country.
He was the valedictorian of his 1922 high school class. Seventy-five years later, he crisply lists the subjects he took in his last year of formal schooling: "Latin, algebra, early European history and physical geography."
He wanted to go to college to study engineering and become, he explains in his precise vocabulary, "an automobile master mechanic." His father didn't see the need. "My daddy had the money and wouldn't send me. I had my books. But he said it wouldn't be nothing but being a tire-changer and a grease monkey."
So Herman Shaw stayed on the farm, plowing the acres behind a mule. He never resented his father, never cast rueful looks back at where college might have taken him. "I loved my daddy and he loved me. I held his hand with my own until his last breath. But nobody can show you any farther than they can see. And my father couldn't see the necessity for it."
In 1926, Shaw married Fannie Mae Greathouse -- "a nice person. What I was looking for." The marriage flourished for "62 years and 7 months," until her death, in 1988.
With their son and daughter, they lived in a little house on a hillside that eases down to a narrow county road. Shaw farmed all day -- "I could plow two, three acres before 12 o'clock" -- then worked from 2 p.m. to 10 p.m. at the Tallassee textile mill. When he decided the family needed a new house, he built it himself, hammering away until 4 or 5 in the morning. He lives alone in that house today.
The Shaws went to church, read the newspapers, worried about their children's educations. Like millions of other American families, the Shaws' lives were unremarkable.
But then Herman Shaw chanced upon a flier advertising free medical care -- a godsend for a family struggling through the Depression. On a Sunday afternoon in 1932, Shaw set off for the church where U.S. Public Health Service doctors would explain the program. He went believing he was going to get a little help from the government.
Instead, Herman Shaw was pulled into one of the sorriest episodes in American history.
He wouldn't know that, however, for 40 years.
The Tuskegee study began with benign intentions, says Dr. Thomas, of Emory University.
L Syphilis was as dreaded as AIDS is today. There was no cure.
Before penicillin was found to stop the disease, syphilis, transmitted sexually, would take its time harming its victims. It would retreat into the body and remain latent for 15, maybe 30 years before its damage showed up in the brain, spinal cord or heart.
The incidence of the disease was shockingly high -- particularly in poor areas, where people didn't know why the sores developed and did not understand how syphilis was spread. One survey of blacks in rural Alabama reported an infection rate of 35 percent.
The standard, unreliable treatments were arsenic and mercury -- in doses sometimes so toxic that doctors weren't sure if it was better to let the disease run its course.
A Norwegian study of infected sailors, completed about 1910, followed symptoms in whites. The Tuskegee study was meant to build on that work and see if African-Americans were affected differently. It was characterized as a noble experiment. The public health service was proud of it.
A 1946 article in the Journal of Venereal Disease Information said the study "promises to be the most illuminating investigation of its type yet undertaken ... an outstanding contribution to the literature."
Herman Shaw didn't know he had joined a medical experiment meant to contribute to the literature. He believed the doctors who promised him free health care.
The medical journal articles failed to note that no one told the men they were part of a research study. No one told them blood tests showed that they carried syphilis. No one warned their sex partners. No one gave them the choice to opt for treatment elsewhere.
Today, patients sign consent forms for the most routine medical tests. And under guidelines that were rewritten after the Tuskegee experiment was exposed, no subject is supposed to enter a government research program without understanding its risks.
But 65 years ago in Alabama, the public health doctors were not worried about informing their subjects.
Shaw remembers joining the throng at the Simmon Chapel AME Zion Church a few miles from his home. Men filled the nave and spilled out onto the church lawn to hear a health service nurse, Eunice Rivers, and other medical officials.
"They informed us that we could get free medicine. A doctor would come down from the North every three months."
In Macon County, Shaw and his neighbors could not walk away from such an offer. "Really, I would say we were forced into it. We could not get health care. We were poor. We could not get anybody in the city to help us in the country."
Six hundred men were enrolled -- 399 whose blood tests showed they had syphilis, the rest a disease-free control group.
Forty years later, Shaw would see his medical records and learn he had been categorized a syphilitic -- though he says he has no idea how he contracted the disease and never recalls being sick. In fact, not everyone infected with syphilis develops complications. Of the eight surviving members of the Tuskegee study, six were syphilitics.
The men were told they were being treated for "bad blood," a phrase country people used as a catch-all for everything from aches and pains to tuberculosis. Every month, a crew of young doctors, all of them white, would come to Macon County to take blood tests and hand out harmless tonics and aspirin that had been dyed pink to make them look important.
"Every year, they would give us a full examination," Shaw says. "And a free meal. Once a year."
Many men endured painful spinal taps, believing they were being treated for bad blood -- unaware that doctors were withdrawing spinal fluid for testing. As men died, and their families fretted about how to provide a decent funeral, the doctors offered burial allowances if the relatives would allow autopsies.
"They were experimenting on us," Shaw says.
More than 120 of the 399 men with syphilis died of the disease or its complications. Others suffered insanity or blindness. Dozens of wives were infected. Some gave birth to infected children. (None of Shaw's family members showed any sign of the illness.)
Nurse Rivers and the medical staff held the men close, working to fend off any outside treatment that might cure them and
interfere with the study.
In the 1950s, Shaw recalls, he took a bus to Birmingham, where a clinic was advertising medical care -- and where his syphilis likely would have been discovered and treated. But the Tuskegee medical staff tracked him down.
Shaw remembers a nurse frantically calling out his name.
"I'm Herman Shaw," he said.
"You're not supposed to be here," she told him. "You're supposed to be back in Tuskegee." He left, untreated, after being fed a free breakfast. He didn't ask any questions.
In 1957, 25 years into the study, the participants were given a certificate and $25 -- $1 for each year of cooperation.
Shaw's granddaughter, Nina Warren, who was a girl when the study was exposed in 1972, didn't learn for two more years that her grandfather had been a participant. The family didn't discuss such things.
But she believes that the study left him suspicious, at least for a few years, of all doctors. Warren recalls an episode in the 1970s when a doctor urged Shaw to have surgery for an abdominal ailment. Though his children pleaded with him, "He said, 'No, I'm not going to do it,' " Warren says. "At the time, I couldn't understand why he was so against it. It was a mystery. I put it together now."
Herman Shaw learned of the Tuskegee study the way most Americans did: He read about it in the newspaper. "It caught me by surprise," Shaw says. "I didn't know what to do."
His wife thought he had been abused. He was "in a quandary," trying to understand how he could have misjudged the program he had trusted. "The thing that disturbs me now," he says, "is they found a cure. They found penicillin. And they never gave it to us. That perturbed me. It vexed me awfully sadly."
The men contacted Fred Gray, a Tuskegee lawyer who'd won landmark civil rights cases before the U.S. Supreme Court. In 1973, when the government failed to offer the Tuskegee participants any settlement beyond lifetime health care, Gray filed a $1.8 billion lawsuit. The next year, the government settled for $10 million.
Each living participant who had syphilis received $37,500. Shaw gave his children, their spouses and his wife $1,000 each.
Today, Shaw carries in his wallet a card that he shows whenever he goes to a doctor. It charges all his medical costs to the public health service.
A happy birthday
"At 9 o'clock this morning," Shaw pronounced as he stood on the screened porch that fronts his house, "I was 95 years old."
Two days earlier, on a Friday in May, he had stood in the White House to accept the government's apology for something that happened so long ago. Now he was back home, where a hot breeze pushed sultry air through the screens.
In honor of his birthday, four cakes were sitting in the kitchen, where stacked cookware and knickknacks cover every surface.
But there were more than cakes to mark the day. National newspapers were on a table, each front page featuring a photo of the president and Shaw, arms flung around each other.
The pictures show a man who has weathered to a handsome elegance. Reedy and tall, Shaw is stooped now. But his unlined skin is the color of polished walnut. His eyes slope solemnly downward.
He begins his day kneeling at the side of his bed to pray aloud and thank the Lord for awakening him. He ends his day in the same place, in the same posture, with thanks for getting through another day. He reads the Bible.
His good humor never flags, says Angela Floyd, the nurse's aide who spends weekdays tending Shaw's house. (Her salary, as part of the legal settlement, is paid by the government.)
"He is," she says, "the most exquisite person I've ever known."
Shaw doesn't need hearing aids. He drives without eyeglasses and is amused when asked if he ever uses them. "Why would I want to wear glasses?" he asks.
But in the last couple of years he's noticed "a fast palpitation of the heart." "When I overexert myself, I just slow down. They give me a little heart tablet twice a day. Other than that, I'm doing fine."
Maybe it's his diet: biscuits or grits, a bit of ham or sausage at breakfast; collard greens, cabbage or peas with corn bread for lunch; more of the same for supper.
And maybe it's his work habits: After his morning prayers, Shaw tends his fields, plowing with two rusty tractors, one a 1941 International he bought used in 1945. He takes a break to eat lunch, watch the news, read the paper and indulge in one soap opera, "Days of Our Lives."
He attends meetings of the Tallapoosa County agriculture commission. And there is always another crop to plant. Soon he'll be putting in purple-topped turnips. "Turnip greens in a few weeks."
Shaw is up at 5 a.m. to start a fire on cool mornings so that the house will be warm for Floyd. In the winter, he spends more time in the little home he built himself. It is the most modest of houses, a warren of small, dark, crowded rooms. An old man lives here, and decades worth of clutter has taken over the house like the kudzu that covers the trees outside. Pieces of old carpet are laid randomly over stretches of sheet vinyl over wooden floors. Blankets and afghans are tossed over every piece of furniture. Fannie Mae's sewing supplies remain as she left them. Her photos are everywhere.
On his birthday, Shaw spent hours at church, as he does each Sunday, driving several miles in his 1989 Buick Park Avenue. "And he drives," Warren, his granddaughter, says. "I mean, he drives. He doesn't creep."
The Shaw clan today includes six grandchildren, three great-grandchildren and a great-great-granddaughter. Shaw, who yearned for more schooling, put his two children through college on a laborer's salary that he describes as "poor, poor, poor," one that peaked at $1.50 an hour. He retired in 1973, after 44 years at the mill. His son, a Navy veteran, got help with tuition from Uncle Sam. To cover his daughter's college bills, Shaw sold some cows.
His daughter lives nearby. His son, Nina Warren's father, died in 1984 after being shot in a robbery of the convenience store he owned.
Last month Shaw harvested 20 dozen ears of corn -- "a whole Park Avenue trunkload," Warren says -- and drove 130 miles by himself to Warren's house in Gadsden.
He spent the night, went to church the next morning, feasted with his family and then drove himself home. At Warren's church, he stood and spoke. "I thank God for every day I'm alive," he said. "And I thank God for the church."
He looks back on the Tuskegee study and says, "It was just one of those things. As of now, I've forgotten about it."
Herman Shaw lives without anger. "The lesson of a generation," Dr. Thomas says.
"Herman Shaw and the men like him showed you the resilience black people have to face insurmountable odds and to rise above them. It's that strength and fortitude we risk losing if we let anger overtake us."
Shaw's granddaughter says she would never enroll in a government health program, no matter the inducement. "No thank you," Nina Warren says. "I'll pay for my health care myself."
From Tuskegee, the waves of suspicion radiate across the years. Some Americans, including children of some of the Tuskegee study participants, believe the experiment was more sinister than the government has acknowledged, that doctors took healthy men and injected them with syphilis bacteria. Investigators say there is no evidence to support that belief; so many men in Macon County had the disease that doctors had no need to infect more.
And many black citizens are convinced that a genocidal government developed the AIDS virus and spread it through African-American communities. That's not so hard to believe, they say, when you know that the government was willing to let hundreds of black men suffer with untreated syphilis for four decades.
Shaw wanted to ease some of that mistrust.
So on that Friday morning last May, nearly 65 years after he
signed up for the Tuskegee study and two days short of his 95th birthday, Herman Shaw and three other survivors arrived at the White House.
Some White House ceremonies are perfunctory -- hasty and superficial. This one was different, mesmerizing. Its power derived not from the president's eloquence, not from the East Room's crystal and gilt, not from the august presence of dignitaries. Its power came from the spirit of the fragile old men who stood and faced their government's leaders.
In the East Room, President Clinton looked out at people who had waited decades to hear the words. "We can look at you, in the eye, and finally say, on behalf of the American people, what the United States government did was shameful, and I am sorry.
In his gray suit, a white rose in his lapel, Shaw sat at Clinton's right. When it was his turn at the podium, he rose -- with the president gently helping him to his feet.
And then Shaw began to speak.
On behalf of all the survivors who are here today and those who could not attend, and on behalf of the heirs of my fellow participants who have died, I wish to thank Mr. President Clinton -- thank you very much -- for inviting us to the White House.
It has been over 65 years since we entered the program. We are delighted today to close this very tragic and painful chapter in our lives. We were treated unfairly, to some extent like guinea pigs. ...
We were all hard-working men, and not boys, and citizens of the United States.
The wounds that were inflicted upon us cannot be undone. I'm saddened today to think of those who did not survive and whose families will forever live with the knowledge that their death and suffering was preventable. ...
This ceremony is important because the damage done by the Tuskegee study is much deeper than the wound any of us may have suffered. It speaks to our faith in government and the ability of medical science to serve as a force for good. ...
In my opinion, it is never too late to work to restore faith and trust. So a quarter of a century after the study ended, President Clinton's decision to gather us here to allow us to finally put this horrible nightmare behind us as a nation is a most welcome decision.
In order for America to reach its full potential, we must truly be one America, black, red, white together, trusting each other, caring for each other, and never allowing the kind of tragedy which has happened to us in the Tuskegee study to ever happen again...."
Herman Shaw glanced back to the tall man seated behind him, as his audience stood to cheer. Bill Clinton, solicitous as a son, reached out to take Shaw's elbow. And then the two men wrapped each other in an embrace.
"It's like it was predestined," Nina Warren says. "Somebody had to live to make sure the story got told."
Pub Date: 8/24/97