When filmmaker Crystal R. Emery edited the first version of her 2021 documentary, “The Deadliest Disease in America,” she didn’t include her own story. As a Black woman living with quadriplegia and two chronic diseases — diabetes and Charcot-Marie-Tooth, a degenerative nerve disease — Emery had a lot of material to draw on. And yet: “I hate when filmmakers put themselves in the film. It’s like, gees, don’t do that,” she laughs. “I thought there were a lot of other stories that were better than mine. But once we saw the footage we had shot and began working with the editor, we realized we needed to open with someone the audience could identify with. That someone happened to be me, though I thought the other stories were just as important.”
Her instincts turned out to be spot-on. Using her own medical history and treatment as a jumping-off point, Emery explores the impact of racism, the aforementioned “deadliest disease,” in medicine. To build her case, she juxtaposes interviews with patients across the country and examples of racism in the recent and not-so-recent past. The film highlights commentary by U.S. Surgeon General Vivek H. Murthy and footage from town halls with speakers of different backgrounds discussing their experiences with medicine.
Using empirical evidence and impactful interviews, she uncovers disparities in treatment for Black patients as well as ableism, a particular concern among people with diabetes. In one particularly powerful part at the beginning of the film, Emery recounts how her physicians and other health care providers often don’t even address her when discussing her medical needs. They direct their questions to her husband or others who might accompany her to an appointment.
“The fact is that when you’re sick, you’re the one who is advocating for yourself. The question I always have is, how can you make me feel better or solve a problem,” she says. “One of my friends challenged me to make a film about disparities in health care, but I realized ‘disparities’ is one of those smoke words. It’s not as direct, not as in your face. If disparities are smoke, you go to the fire, and you see racism. So I started there.”
Race has long been a critical part of the discussion surrounding diabetes diagnosis. According to the U.S. Department of Health and Human Services’ Office of Minority Health, Black adults are 60% more likely than non-Hispanic white adults to be diagnosed with diabetes. Stark differences exist in the severity of their diagnoses, too. Non-Hispanic Blacks are twice as likely to die of diabetes than non-Hispanic whites. They are 3.2 times as likely to receive end-stage renal disease diagnosis and twice as likely to be hospitalized for lower limb amputations. Emery documents cases in which Black people’s concerns about their conditions were questioned or ignored, which can lead to such outcomes.
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Emery remembers her initial diabetes diagnosis. “I was on the road somewhere, and I had already become quadriplegic. I remember this particular week, I kept having to stop to go pee. I was like, ‘OK, what’s going on, I’m always thirsty,’” she says. “The doctors started thinking something was really wrong with me. They took my blood sugar and said, ‘Oh, wow, you’re diabetic.’” The diagnosis was not entirely surprising. Diabetes runs in her family on her father’s side. “I was also in a wheelchair and gained 60 pounds within two years,” she says. “That is a great trigger for diabetes.”
The patterns of disparity she explores in the film came into play from the moment of her diagnosis. Her first doctor gave her pills, “and he said, ‘Go home and take these pills.’ Well, he never told me how to take the pills or what the medication was going to do or what type of dietary adjustments to make,” she says. “My sugars were up and down and everywhere. I gained more weight and was put on insulin.” The physician made certain assumptions about Emery based on her quadriplegia and race, she believes, that led him to treat her differently than another patient.
It wasn’t until Emery went to a different doctor that she received the guidance she needed. “She really worked with me to understand how diabetes works and how insulin works. You have to be very disciplined with what you eat, how, and when,” she says. The condition also demands careful monitoring in light of Emery’s other medical concerns. “Sometimes I have to take prednisone, and my blood sugar goes off the charts,” she says. She currently takes two types of insulin and pays close attention to her daily routine. Slight deviations, such as promoting a new film, can make eating regularly and healthily a challenge. “There’s no easy way to manage it,” she says.
Emery’s schedule will remain busy for the foreseeable future. She’s the founder and CEO of URU The Right to Be, Inc., a nonprofit based in New Haven, Connecticut, dedicated to creating a more equitable world through the use of media, technology, science, and the arts. She hopes that films like Deadliest will raise awareness among doctors of the assumptions they make when treating patients. She sees art as the perfect medium to deliver impactful messages that resonate long after the screen has faded out.
“The arts lower people’s defense mechanisms. When you lower those defense mechanisms, you can introduce people to a new thought, a new experience,” she says. “But you have to approach them where they are. I want everyone who watches this to experience the deadliest disease in America and realize that we all play a part in it, whether it is institutional, mediated, or internalized. I want to make us more humane as people.”
Want to learn about other celebrities living with type 2 diabetes? Read our interviews with S. Epatha Merkerson, James Earl Jones, Anthony Anderson and Mike Golic.