When you consider what the deadliest disease in America is right now, you probably think of Covid-19, which has killed more than 650,000 in the United States since 2020.
But many of those deaths, argues filmmaker Crystal R. Emery in the new documentary The Deadliest Disease in America, are mere symptoms of a greater issue. Racism is the actual culprit for many deaths caused by the coronavirus and so many more, Emery says, and she lays out historical and recent support, from experiments performed on enslaved people centuries ago to the inordinate toll the pandemic has taken on Black and Hispanic people.
“It’s like a big ball because if racism in health care had not existed previously, we would not be dying in such high numbers,” Emery says. “Covid just exacerbated every hidden or unseen or overt or subtle racism found in health care. I had to put it in there as part of that timeline. You can begin by looking at smallpox and things done to people of color in the 1800s, and all of this gradually rolls up into Covid.”
Deadliest Disease opened at Cinema Village last week and is still looking for a nationwide distributor.
The film includes commentary by U.S. Surgeon General Vivek H. Murthy as well as footage from town halls with speakers of different backgrounds. It also looks at health care through a personal lens, using Emery’s own experiences to shine a light on greater problems within the industry.
She notes that as a Black woman living with a disability, she is often ignored by her own physicians, who address questions to her husband or others accompanying her to appointments. Sometimes doctors or physical therapists have made assumptions about her health or failed to present options to her, such as the doctor who initially diagnosed her with diabetes but didn’t explain to her how to take her medication or adjust her diet.
Emery is the founder and CEO of URU The Right to Be, Inc., a nonprofit dedicated to creating a more equitable world by using media, technology, science and the arts. She works as a STEM and health care advocate and previously directed the documentary Black Women in Medicine, exploring the lives and work of doctors who broke racial and gender barriers.
Emery conceived of the idea for the documentary a decade ago. She lives with quadriplegia, diabetes and Charcot-Marie-Tooth, a degenerative nerve disease, and as such has a lot of doctors and doctor’s appointments.
“I had about 10 doctors, and they were amazing doctors, but I realized that they were all white,” Emery says. “One of my friends challenged me to make a film about disparities in health care. Disparities is one of those smoke words—it’s not direct, not as in your face. So if disparities is the smoke, you have to go to the fire. You see the racism.”
She began speaking to people whose stories she wanted to tell, who detailed frustrating and sometimes debilitating experiences with the health care industry, such as receiving different treatment plans (often less effective) than white counterparts with the same symptoms or disease.
“There were people who were denied pain medication because they were Black, because of that stereotype that Black people are drug addicts,” Emery says. “The focus evolved over time, and the people I interviewed became more open to having an honest conversation.
She hopes that audiences will come away from the film wondering how they can become part of a change.
“I want them to experience the deadliest disease in America and realize that we all play a part in it, whether it is institutional, mediated, internalized—we all play a part in it, but we can let go of these chains that bind us because of our ecosystem. I want people to think, ‘What can I do as an individual or an organization to change this?’” Emery says.