Descendants of Tuskegee Syphilis Study Survivors Say It Was Nothing Like the Covid-19 Vaccine
By: Morgan Jerkins
Tags: Tuskegee Syphilis Study, History, Health, Covid 19 Vaccine, Equality

ZORA: Can you tell me how you got started with the Voices for Our Fathers Legacy Foundation and how you were able to find other descendants?

Lillie Head: In 1997, there was an apology by then-President Clinton. In that apology, accommodations were made for the building of the National Center for Bioethics in Research and Health Care at Tuskegee University. That came into fruition, and there was an opening in 1999 for the Center. As many descendants that the Center could contact, they invited them to the opening and celebration. From 1999 until 2011, we would go to the Commemoration of the Apology and participate in symposiums and sessions about ethical procedures and biomedical research. But we weren’t really doing anything to honor and remember our fathers.

In 2011, we expressed our desire to hear from the descendants to the director of the Center, Dr. Reuben Warren. Their stories and our fathers’ were not being told. We started off with three descendants, Clemmons Julkes, Rev. Roosevelt Baums, myself included, as the families’ team leaders. In 2014, we became a 501(c) organization. We wanted to tell the full story and clear the misinformation that was out there. We would come each year, and it’s all a part of the healing. We would do healing sessions, including this year virtually.

Joyce Christian: I know my dad would be so proud of my sister Lillie because they had no voice. Whatever we can do to make their voices heard, that’s our platform.

“He didn’t even know he was a part of a study. He just knew he had the bad blood and they were recruiting. ”

Can you talk a bit about these healing sessions?

LH: You talked about your anger that you felt towards the study. You have to remember how long it’s been since the study has been known. It was in 1972, and there we were in 1999 and 2014. You’d be amazed at how anger and shame and trauma can last within you if you bury it. Some of the descendants contracted syphilis that was passed down from their mothers who got it from their fathers. Some had fathers who went blind. So we started talking about that and what we could do to transform the legacy of the United States Public Health Service Syphilis Study at Tuskegee and Macon County, Alabama, that would honor and remember and honor the sacrifices of our ancestors.

We award scholarships, and we have identified an anthropologist, Dr. Arvilla Payne-Jackson, who would help us tell those untold stories. We also want to build an inspiration and memorial garden at the National Center for Bioethics in Research and Health Care at Tuskegee University to preserve the history and tell the legacies of these men. They’re unsung heroes.

What is some of the misinformation about the study that’s been floating about these days?

JC: The other day, I was listening to MSNBC, and Rev. Al Sharpton was referring to the “Tuskegee Experiment,” but it wasn’t that. The Tuskegee Experiment was about the Tuskegee Airmen because they didn’t believe Black folks could fly airplanes. The Tuskegee Syphilis Study was a United States Public Health Service (USPHS) study that was done by the federal government. Even Gov. [Andrew] Cuomo misstated. People don’t have a clear understanding of what the Tuskegee Experiment and what the study was. It’s up to our foundation to point out the difference between them.

Some people also think it was an experiment that gave these men syphilis, and it wasn’t. They didn’t give these men treatment. They wanted these men to die so they could do autopsies and study the results. They had already done syphilis studies in Europe. It was an absolutely egregious thing. I don’t think many in our community know much about this study.

Miss Joyce, what made you become a nurse?

JC: I wanted to know about what was happening with my body and be able to help my mother, my father, my brothers and sisters, and everyone in my family. And it has paid off tremendously that I’ve been able to help other people in decision-making, medical diagnosis, and questions to ask. Being an advocate. We need to be at the table, and we need to be saving lives, and Black lives do matter.

Lillie’s parents — Johnnie Mae and Freddie Lee Tyson.

Can you tell me a bit about what your father, Freddie Lee Tyson, was like?

LH: He was a wonderful person. He was of strong character, and he loved his family. He didn’t even know he was a part of a study. He just knew he had the bad blood and they were recruiting. In Macon County, Tuskegee, there was an epidemic proportion of syphilis. My father wanted to protect himself and his family. He wanted to get the benefits that were offered. Keep in mind, this was in 1932 when he was recruited. These were very difficult times in the rural South. He just got married in 1931. This was before any of his nine children were born. After researching my father’s medical records at the CDC archives, we found out that he had congenital syphilis. Without health care at that time, it was an opportunity, along with the free burial and lunch. He did stop going and having his blood drawn.

What made him stop?

LH: My grandmother, Maggie Guin Neal, was a well-known midwife in Macon County, and she had a close relationship with one of two White doctors in town. She’s the one who told my father to stop taking those blood tests. Several women were affected by what was going on. Some had stillborn babies or babies born with symptoms. Some women had other health issues like arthritis. It was so troubling.

“In order to have trust, you have to have trustworthiness. If you haven’t proven yourself over time, no one is going to trust you.”

With regards to the descendants and with the Black community at large, have you found that there is a mistrust in the public health system given the legacy?

JC: I think it’s not so much about the study but rather about the disparities that are ongoing. It’s very important that we look at the facts and the truth.

LH: I think it’s because of over 400 years of social injustice and the way African Americans have been treated in this country. For this period of time, the study is the most recent, and people can relate to it because many people have heard about it. It’s a combination of everything, but people are using the study as one of the reasons for a lot of trust. In order to have trust, you have to have trustworthiness. If you haven’t proven yourself over time, no one is going to trust you.

So do you think the comparisons between the Syphilis Study at Tuskegee and the Covid-19 vaccine are misguided?

LH: What I find interesting is that when penicillin became known as the therapy for treating syphilis, those men were denied treatment. I’m having trouble understanding the logic. The men in the study didn’t get a vaccine. You are comparing men not getting a vaccine to a vaccine that is available. So how can you compare not having something to the opportunity to have something? I can see if some people believe, well, they’re not gonna give it to us anyway or if what they give us may be different than someone else. But that’s not the case either. Because of what happened during the Syphilis Study at Tuskegee, an Institutional Review Board (IRB) was created, and part of that board is responsible for analyzing and approving the Covid-19 vaccine.

JC: I remember when the swine flu was going on, there were people who didn’t want to get the swine flu vaccine. But in the end, everything worked out fine. Just today, 300,000 people have died. I know that there are health disparities in the Black and Brown communities, and they are very fearful to take something from someone who’s been oppressing them since slavery. But we need to be at the table. We need to be a part of something that’s bigger than us, and we need to step out on faith. I know that the 623 men in the United States Public Health Syphilis Study at Tuskegee in Macon County stepped out on faith. They believed that they were going to get treatment. I think our father would want us to step out on faith. We have been brought to our knees, and we need to stand together. We need to seek some relief.