Few people like going to the doctor. But for some, that fear is compounded by discrimination and history. For black Americans, the pervasive history of racism in America bleeds into virtually every facet of life, including the doctor’s office — with devastating results.
Rahim Khalil is a beauty supply store owner in Carbondale. He also has a degree in social work. As a black man, he says he’s felt disrespected by the medical system, and he’s talked to customers with similar feelings.
Khalil said as a black man, “We know when we’re being patronized, put down, you know, avoided.” He said the disrespect can be subtle, but still harmful. “When we come in, these are the attitudes that we perceive. We don’t want to go through that mess. We don’t. So we avoid it.”
That exacerbates the problem, because preventative care is critical for public health.
Black Americans are more likely to develop health conditions at an early age, and more likely to die younger than their white counterparts. Access to healthcare could improve those statistics, but ⅓ of black Americans say they’ve personally faced discrimination at hospitals, and 22% say they’ve avoided seeking medical care for fear of being discriminated against.
Khalil recalls a time his brother, who suffered from a number of illnesses, was admitted to the hospital. “When they brought him in the first thing they talked about was hospice,” he said. “They were just kicking him to the curb. I said, ‘Whoa, hospice? Explain it to me, why is hospice what’s needed? You didn’t tell me his condition, all you’re telling me is that you’re getting ready to pull the cord.’”
Khalil’s brother did end up in hospice, but only after Khalil insisted on an explanation. Once the doctors explained, he agreed it was the best option. Khalil said overall, the situation was intimidating.
“When they talk to you, they give you all this medical jargon,” he said. “They don’t make it plain.”
Greg Smith works as an outreach coordinator with Southern Illinois Healthcare, and has met with others who share feelings of distrust toward the medical community. He said he met with one woman who grew up never going to the doctor unless it was required for school.
“It was a cultural distrust within the African-American community,” said Smith — and with good reason. Smith said doctors in the U.S. have a history of “experimenting on African Americans and treating them differently.” He said, “Because of that distrust it was thought you didn’t go to the doctor unless you were dying.”
Khalil knows exactly what Smith means. He points to instances of medical abuse on the black community, including the Tuskegee experiment. For forty years, doctors witheld treatment from unsuspecting black men infected with syphilis. Many were not even told they had the disease.
“Tuskeegee… Slavery... We had one piece of garbage that used to use female slaves, they used slaves lots for their experiments,” Khalil said.
He’s referring to J. Marion Sims, the so-called “father of gynecology.” Sims developed his technique by operating on female slaves without anesthesia.
In another example, many scientific advancements and 17,000 patents rely on cells taken from Henrietta Lacks in the 1950s — a black woman who never consented to her cells being used. Even today, black Americans are disproportionately enrolled in studies that don’t require patient consent.
Khalil credits education for helping him navigate the system, but says doctors could also work on being more informed.
Janice Bowie agrees. She’s a professor at the Johns Hopkins Bloomberg school of public health.
“Some will refer to the term cultural humility, to at least acknowledge that I am aware that there is some distinction that we may not share but I am going to at least acknowledge and try my best... to provide care that is appropriate and care that is comfortable for you,” said Bowie.
For groups like Southern Illinois Health and others in Illinois, that includes bringing health information and services into people’s neighborhoods. They’re working through partnerships with local schools, businesses and churches.
That’s one of the ways Khalil sees health providers trying to reach out to communities around Carbondale. Although he is Muslim, he said he sees many churches in the area holding health fairs to reach the community and provide important health screenings.
Research shows those kinds of community and faith-based health events have been successful in reaching black communities.
But that’s not the biggest thing, Khalil says.
“Education,” he said. “Education and a lot of it. I mean, hands on education. Personal education. Come almost to their house. It’s okay to call, follow up, get your nurses to call. Even visit. Be more personal.”
Without that education, patients can miss out on important health information, according to Angie Bailey, who works in community outreach at SIH. She echoes the sentiment that patients too often miss the fact they have health conditions, “because they have that fear or distrust.”
Black Americans are 60% more likely to have diabetes than white Americans, and also more prone to higher rates of high blood pressure. If caught early by a doctor, these conditions can be successfully managed and treated. But the longer someone waits to see a doctor, the more advanced these diseases become — making them more challenging to treat.
“We’re seeing more people that… may be in the 30s or 40s and have a chronic health condition that they never knew they had.” Bailey said. “Because they hadn’t had those preventative exams.
But going to see a doctor — especially when you feel fine — remains a challenge, especially for those who continue to live with the legacy of racism and discrimination that remains in the consciousness of many black Americans.