It started with flyers. Flyers that were advertised primarily to poor African-American men and were promoted in black neighborhoods.
By the time the experiment ended in 1972, 28 men had died of syphilis, 100 had died of directly related complications; at least 40 wives had contracted it, and 19 children were born with it.
It was presented as a health care program that would provide free medicine, free meals, free physicals, and free burial services for all participants. A science experiment that began in 1932 with a partnership between the Public Health Service and the Tuskegee Institute, it was meant to last only six months.
It lasted 40 years instead. The decision was made to “follow the men until death.”
The Tuskegee Experiment lasted from 1932 to 1972.
The last living participant died in January 2004.
The last living widow (who was receiving benefits resulting from the settlement) died in January 2009.
It only ended, in part, because an employee of the institute that started the study told a local reporter what was happening.
Although it was designed to study how venereal disease would progress IF LEFT UNTREATED, participants thought they would receive treatment for rheumatism, stomach issues, or other ailments. The flyers promised “colored people” treatment and services for “bad blood.”
They didn’t say what constituted bad blood.
Researchers didn’t seek informed consent.
- They weren’t told that they would not actually receive treatment for “bad blood.”
- They weren’t even told what “bad blood” was.
- They weren’t told that they actually wouldn’t receive treatment for anything.
- They weren’t told that they would be used as part of a study, or used to study the effects of syphilis, specifically.
- Or that, should medicine become available, they would be denied future treatment for syphilis.
- They weren’t told they had syphilis at all (for those who came to the study with it).
- They weren’t told that trusted health professionalss– educated scientists and researchers—would purposely and willfully watch them suffer and watch them die.
- They weren’t told that these trusted health professionals would stand idly by as participants unknowingly passed the disease on to their spouses, and eventually to their children.
In 1945, when penicillin became available as an effective treatment for syphilis, the living participants were not offered the drug.
Nurses were even paid to ensure that none of the men received treatment when they visited community doctors in town. The Public Health Service ensured that they didn’t.
Some claim that researchers intentionally injected participants with syphilis.
Although this has not effectively been proven, the study bears similarities with a Guatemala-based experiment in which researchers intentionally infected subjects with sexually transmitted diseases. [Read more about it here.]
The Tuskegee Experiment lasted from 1932 to 1972.
It’s May 2018.
My parents were born in the late ‘50s.
I was born in 1982.
In 1972, one of the Public Health Service employees, Peter Buxton, leaked information about the experiment to local reporters.
By this time, 28 men had died of syphilis, 100 had died of directly related complications; at least 40 wives had contracted syphilis, and 19 children were born with the disease.
Effects of syphilis include stroke, numbness, deafness, blindness, dementia, heart disease, neurological issues, aneurysms, hair loss, swollen glands, vaginal sores, muscle aches, fever, and even death.
It can be passed on during childbirth in what’s known as congenital syphilis.
A good, long, Circle of Life, come-to-Jesus conversation.
We need to talk about power and privilege.
Crack vs. cocaine.
The War on Drugs.
The KKK. The alt-right. And immigrants.
We need to talk about genocide. The indigenous. Colonization.
We need to have a conversation about race.
What I Inherited
I’m leery of the police because I don’t feel safe around them.
I don’t visit the doctor as much as I should.
I never learned how to swim because I’m afraid of the water.
I take after my mother.
I favor her.
We have the same eyes and the same round face. We’re both short, theatrical, and funny. We have the same hair texture, the same smile, and the same eccentric taste in fashion.
We even have the same walk.
I have her wit, her work ethic, and her anger.
My mother’s mother passed away long before I was born, when my mother was a teenager, so I never knew her.
I don’t know my grandfather’s name or whether he’s still living. I don’t know his height or weight or our similarities. I could ask, of course, but it always seemed like something I shouldn’t do. Someone I should never mention.
I know that my grandmother’s name was Mary. I was a teenager when I first saw her picture— an old red and brown tinted photograph—today’s version of black and white.
When I was younger—and unfortunately, still today—I didn’t always understand my family. I thought their fears didn’t make sense. Their values. Their expectations. I thought everything they were afraid of was completely unwarranted.
I haven’t always wanted what I inherited.
My mother doesn’t like buses.
We didn’t ride them to school when I was younger. My parents always drove us.
When I moved back from Chicago, my mother was horrified that I’d use public transportation at all. Horrified that I even WANTED to.
It wasn’t safe!
(Jim Crow. De jure and de facto segregation. The Civil Rights Movement. The Montgomery Bus Boycott.)
She doesn’t say any of these things out loud.
She doesn’t have to.
Crafting The Timeline: Some Basics, Some Facts, Some Opinions, and Things I Still Don’t Understand
The Ku Klux Klan was created in Pulaski, Tennessee by Confederate veterans in December 1865.
It’s May 2018, and the KKK still march. In some places, they even still rally in long white robes and hoods.
I know because some friends from college grew up in rural areas of Mississippi, Atlanta, Alabama, and Texas.
A few months ago, I went to an artists’ talk at an African-American art museum in Houston. The artists were there to sit on a panel and discuss their influences, their inspiration, and the evolution of their work.
One of the artists talked at length about his great-grandfather who had such a strong hold over his life.
His great-grandfather was born a slave and remained one throughout his lifetime. The artist who spoke of him is just a few years older than me.
In 1973, a civil rights attorney filed a class-action lawsuit on behalf of the Tuskegee victims and their families.
In 1974, the suit was settled out of court with an “award” of $10 million dollars and a promise by the U.S. government for lifetime medical benefits and burial services to all participants still living. To provide these services, the Tuskegee Health Benefit Program (THBP) was born.
In 1975, offspring, wives, and widows were added to the program.
In 1995, THBP expanded to include health and medical benefits. Today, THBP is now overseen by The Centers for Disease Control and Prevention.
We tend to disengage or get annoyed when people of color begin the conversation with slavery, as if it was part of a distant past that bears no hold on our current reality.
We need to revisit the timeline.
On White Innocence and Black Guilt: Ain’t Gone Hurt Nobody
I attended diverse schools and lived in diverse neighborhoods, but when I was younger, most of my friends were white.
We went to each other’s birthday parties at Chuck-E-Cheese and Funplex. We played together at recess. But for the most part, we were never invited into each other’s homes.
I didn’t notice it much until I got to middle school. SHE came over and put her feet on the couch. And she got lemonade from the fridge without asking.
There’s a myth that black men are violent and dangerous. There’s a myth that black women are aggressive and promiscuous.
We tend to believe that black = guilt, and white = innocence.
You don’t have to take my word for it. There’s plenty of case law, research, and sentencing to support this claim. (More on that later.)
We tend to believe that black people, if they are human, are not innocent.
It goes against everything I believe in– less so because I’m black, and more so because it was never my experience.
I couldn’t curse at home. I couldn’t curse at all. We couldn’t say hell, or lie, or fart. We had to say “he told a story” or “he passed gas.”
My first friends to curse, to raise their voice at their parents, to kiss, to sneak out of the house– my first friends were white.
My first friends to experiment with drugs, to experiment with sex, to use a gun, to get an abortion– my first friends were white.
If I can say so without disrespecting them or my memory of them– they were far from innocent.
White = innocence, black = guilt just wasn’t true from what I’d seen and heard and knew.
A Final Word
A few months ago we were on the train downtown when an older couple started chatting with us. They began with a polite greeting and exchanges of our hometowns. Then, oddly, they immediately began a diatribe on sickle cell.
“It’s a horrible disease. No one should go through what those people go through. My wife here is a nurse.”
“It’s nice to meet you both.” We all shook hands.
“You wouldn’t believe what she’s seen. You wouldn’t believe it. Can you imagine? If you were pregnant and carried the gene, you’d have to do the right thing. You’d have to abort it. It’s just the only decent thing to do.”
I paused. I inhaled a deep, long, dispassionate, internal sigh.
I had an out-of-body moment of reflection:
These two educated, smartly dressed, sweet-as-pie, white folk are politely, but actively engaging in a conversation about aborting babies with the gene for sickle cell. On a pleasant Sunday afternoon. With two black people. With me. They’re having this conversation with two black people on a crowded train.
The trait for sickle cell is an inherited blood disorder. It is particularly common among people whose ancestors hailed from sub-Saharan Africa. Although researchers are not able to calculate the exact number of people in the U.S. living with the disease, it disproportionately affects more African-Americans than other groups.
Approximately 1 in 13 African-American babies are born with the trait for sickle cell.
“Don’t you think so? Don’t you think women who know they have it shouldn’t go through with it? Shouldn’t they end the pregnancy?”
A few years ago I went to a friend’s party at a bowling alley. Some of her friends were there from high school, middle school, and college. We played around with the jukebox; we told a few stories. I struck up a conversation with one of the guys who was interested in education. He was tall and funny and bowled slightly worse than me.
Just a few years after that, I learned that he died on the way to the hospital– from complications due to sickle cell.
He drove to the closest hospital he could find– one in a suburban part of the city. They didn’t have the resources to properly treat him.
He died on the way to the second hospital– the one in the black neighborhood on the other side of town.
He was in his mid-twenties.
I turned to the couple on the train and politely excused myself from their “innocent” conversation.
We need to have a conversation about race.
I hope you’ll stay.
I hope you’ll join me.