You Are the Captain of Your Body — Not a Passenger in Your Own Care

You do not need permission to ask questions. You do not need to wait for your doctor to bring something up before you can. You live in your body every single day — you know when something feels off long before a chart or a lab result confirms it. That knowledge is data. It belongs in the conversation, not on the sidelines of it.

Too often, people walk into an exam room and shrink. They swallow the question they came to ask because the person across from them is wearing a white coat, holds a title, and seems to hold all the authority in the room. So they nod. They say "okay" when they mean "I don't understand." They leave with more questions than they came in with.

This isn't a personal failing. For many communities, it's inherited history.

Where the mistrust comes from

For decades, the U.S. Public Health Service ran the "Study of Untreated Syphilis in the Negro Male" in Macon County, Alabama — recruiting hundreds of Black men with the disease, and deliberately withholding treatment even after penicillin became the standard cure, all while telling participants they were receiving care. The study ran from 1932 until it was exposed by the press in 1972.

The damage didn't end when the study did. Stanford economists Marcella Alsan and Marianne Wanamaker found that when the Tuskegee study became public knowledge in 1972, it was followed by a measurable rise in medical mistrust and a drop in both outpatient and inpatient doctor visits among older Black men — concentrated most heavily near Tuskegee itself. Their research estimates this accounted for a meaningful share of the life-expectancy gap between Black and white men by 1980.

Researchers and public health leaders are clear that this history didn't stay in the past. Decades later, it was cited by Black Americans as a reason for hesitancy toward the COVID-19 vaccine — a reminder that when trust is broken, it doesn't reset in a generation. And more recent research on health care distrust points out that Tuskegee wasn't an isolated event — it sits inside a longer pattern of medical mistreatment, dating back to slavery and continuing through the eugenics era, that shaped how entire communities learned to relate to the health care system.

At the same time, Johns Hopkins researchers found something important: for many African Americans, it's not just the history of Tuskegee driving mistrust today — it's ongoing negative experiences with the health care system, right now, in real exam rooms. Which means this isn't only a history problem. It's a today problem.

Why this matters for how we show up in the community

This is exactly why our foundation goes into underserved neighborhoods and does the unglamorous work — sitting with people, answering questions they were told (or made to feel) weren't worth asking, and helping them find their voice in rooms where they've historically been talked at instead of talked with.

Healthcare should be a partnership. Your physician brings training, clinical expertise, and years of study. You bring the lived experience of your own body — symptoms, patterns, instincts, and history that no test can fully capture. Neither side of that partnership works without the other.

You don't need an "in-depth" moment or a perfect opening to speak up. You don't need to wait to be asked. Bring the list. Ask the question twice if you didn't understand the answer the first time. Request a second opinion without apologizing for it. Your voice is not an interruption to your care — it is your care.

You are not a passenger. You are the captain.

Sources: NBER Working Paper 22323, "Tuskegee and the Health of Black Men" (Alsan & Wanamaker); NPR, "In Tuskegee, Painful History Shadows Efforts to Vaccinate African Americans" (2021); Johns Hopkins Bloomberg School of Public Health, "Knowledge of Tuskegee Study Doesn't Increase Medical Mistrust" (2005); ScienceDirect, "Historical Trauma, Health Care Distrust, and the Legacy of Tuskegee" (2024).