Memory, Reconciliation, and Healing: Moving Beyond the
Tuskegee Syphilis Study
Editor’s Note: In the following article, Wellesley University professor Susan Reverby, Ph.D., helps us to understand how memory can help us “confront our history, name it, learn from it, and create a different future.”
Reverby has been a consistent force in confronting the issues that affect the health of African Americans. As a member of the Legacy Committee on the Tuskegee Syphilis Study, she helped convince President Bill Clinton to make a public apology to the surviving men and their families in 1997.
According to Reverby, the Tuskegee Syphilis Study (1932–72) has become shorthand for conspiracies, against African Americans, designed to result in black genocide. This clinical trial was “longest running non-therapeutic research study in U.S. history that involved the United States Public Health Service and nearly 600 African-American men in the counties surrounding Tuskegee, Alabama. The men thought they were being ‘treated,’ not studied, for what they thought of as "bad blood." The study has become a central metaphor for distrust of the health care system and as the key example of unethical research.”
Last February, Walter Hoye, executive elder of the Progressive Missionary Baptist Church of Berkeley, California, was sentenced to 30 days for violating and law mandating a buffer between protesters and clinic patients. Hoye is interested in his “special calling to work for the end of the genocide-by-abortion taking place in the African-American community.” He hopes to expose a black genocide.
In the article below, Reverby provides a thoughtful response to a pattern of “holding on to [The Study] as a way to avoid criticizing the problems of the health care system now, the disparities that separate the life chances of whites and blacks, or staying away from care or appropriate clinical trials, [which] only does harm.”
By Susan M. Reverby, Ph.D.
“Tuskegee, Tuskegee, Tuskegee,” the supposedly frightened black patient yells at his doctor in a Saturday Night Live skit that was more about signifying a problem than simple humor. His mantra reflects widespread knowledge about a research study often called The Tuskegee Study, which was more formally labeled a study of “untreated syphilis in the male Negro” run by the U.S. Public Health Service in and around Tuskegee, Alabama, from 1932 to 1972.
During that time, hundreds of African-American men with late-latent syphilis (non-infectious) were told, and thought, they were being treated, not watched, for their “bad blood.” While we will never know for sure how many of the men died because of the deceptions and failure to treat, it is clear that many had their lives shortened by this neglect.
The word “Tuskegee” has become the American metaphor for racism, government malfeasance, and physician arrogance. The study is the subject of histories, films, rumors, political slogans, and in 1997 a federal apology in the White House from then President Bill Clinton. Those who want to explain the reasons why African Americans in particular seem to fear the health care system or participation in medical clinical trials often invoke memory of the Tuskegee study.
Separating Facts From Fictions
As with anything this important in our nation’s life, the stories of the study have become myths where the facts and fictions mix. Despite the claims from sources as diverse as Jeremiah Wright, Barack Obama’s former pastor, in his “God damn America” sermon; to former nightly ABC and NBC newsmen Peter Jennings and Tom Brokaw, there is no evidence that the men in Tuskegee were ever injected with the spirochete-shaped bacteria that causes syphilis.
Injecting people to give them syphilis is actually quite difficult to do because of the nature of the bacteria and the way it grows. Although the Public Health Service assumed all the men in Tuskegee were no longer infectious, it is however possible that some of them passed the disease on to wives and sexual partners, and perhaps then on to their children. There is evidence that the Public Health Service tried to keep all the men from treatment and used deceptions to do this. But it is not clear that they were always successful. By the time the study was ended in a hail of publicity and congressional outrage, those men who had survived past the late 1940s often found their way to other medical care and may have received enough penicillin to cure their disease.
The men who agreed to the study did so because they thought physicians sent out by the Public Health Service were helping them and their families. A public health nurse (the subject of the very fictionalized HBO movie “Miss Evers’ Boys) cared for them, brought food and supplies to their families, and may even have made it possible for some of the men to get to treatment. In exchange for their participation, the men were given vitamins, tonics, and aspirins (they, though, were treatment for their syphilis), trips into the city of Tuskegee, X-rays, diagnostic spinal taps (called “special treatments” and back shots) — and $50 to their families to cover their burials in exchange for the right to conduct autopsies.
Once the study ended, the stories started to grow. Some think all the men died from their disease (they did not). Others think it was only done on women (it was not). Very few actually take the time to read the multiple books and articles about the study, and misinformation spreads easily especially on the Internet.
The Importance of Learning From the Truth
It is crucial to separate what seems to have actually happened from how we remember it and to see how differing groups use stories of the study to meet different political ends. Spike Lee, for example, used it to explain why the assumption that the government might have blown up the levees in New Orleans was not so far-fetched. Those fighting state-funded stem cell research in Michigan aimed an ad at black communities by using photographs of the study and claimed “unrestricted science” has a dangerous past. In another book, a set of false connections among those concerned with birth control and the study was used to make a claim about why abortion was dangerous and immoral.
Phill Wilson, the head of the Black AIDS Institute in Los Angeles, California, argued several years ago, “The syphilis study was real, but it happened 40 years ago, and holding on it is killing us.” There is a difference between knowing about the study and the past and using it now.
Everyone should know as much as possible about what actually happened and what it means. But holding on to as a way to avoid criticizing the problems of the health care system now, the disparities that separate the life chances of whites and blacks, or staying away from care or appropriate clinical trials, only does harm. Now is the time to confront our history, name it, learn from it, and create a different future.
Susan M. Reverby is the Marion Butler McLean Professor in the History of Ideas and Professor of Women’s Studies at Wellesley College. She was a member of the Legacy Committee that successfully lobbied for the federal apology for the Tuskegee Study. She is the editor of Tuskegee’s Truths: Rethinking the Tuskegee Syphilis Study (Chapel Hill: University of North Carolina Press, 2000) and author of the forthcoming Examining Tuskegee: The Infamous Syphilis Study and its Legacy (Chapel Hill: University of North Carolina Press, Fall 2009).
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