Interviews

Crystal R. Emery Talks “The Deadliest Disease in America,” Her Doc About Racism in Healthcare

"The Deadliest Disease in America": URU The Right To Be, Inc.

Crystal R. Emery is a producer, educator, author, and filmmaker known for producing socially conscious storytelling on a variety of platforms that celebrate the triumph of the human spirit, a cause close to her heart as a quadriplegic who works to ensure that physical limitations don’t define her potential. She is also the founder and CEO of URU The Right To Be, Inc., a non-profit content production company that tackles social issues via film, theater, publishing, educational media, and other arts-based initiatives. Her body of work covers a broad range of topics from diversity, inclusion, and equity, to children’s books, sociopolitical issues, and STEM. In 2020, she created the Our Humanity initiative, a COVID-19 risk communication and risk prevention effort designed to reach Black, Hispanic, and Indigenous communities.

“The Deadliest Disease in America” opens today, September 10, at Cinema Village in New York City. Find screening info here.

W&H: Describe the film for us in your own words.

CRE: “The Deadliest Disease in America” is an in-depth look at how racism shows up in healthcare, a profession that presumes a Hippocratic Oath not to harm but has consistently provided unequal treatment and increased mortality for Black, Brown, and Indigenous people through subtle and overt systemic racism.

W&H: What drew you to this story?

CRE: After I became a quadriplegic, I thought my creative life was over. I was challenged by someone in the health field who asked me if I thought I was such a great director, why don’t I make a film about disparities in healthcare? Being the competitive person that I am, I said I could do it. Three months before we were scheduled for principal photography, I went into the hospital, extremely ill, and for the next two weeks I experienced every form of racism within a hospital setting. Things I had never seen or experienced before, like being given a heart catheterization, which would have definitively diagnosed that I had a heart attack. So, when I got out I was more determined to make a film that captured the truth and to give voice where there was no voice.

It was overt racism in the manner that doctors and nurses talked to me. I had my own doctors quietly change a cardiologist that was assigned to me because they knew of his racist treatment and could not get rid of him, so they made sure that he was not one of my attending physicians. I was sent home only to have to return two days later with an infection that was left untreated.

W&H: What do you want people to think about after they watch the film?

CRE: I want people to understand that we are an ecosystem, that this affects absolutely all of us, and to see firsthand what systemic racism looks like in healthcare.

I want people to understand that racism is so much more than just a word in the devastating impact it has on the treatment Black, Brown, and Indigenous people receive, and I want people to be moved to action.

W&H: What was the biggest challenge in making the film?

CRE: The biggest challenge was finding the money to tell the story. When I started, nobody was willing to talk about racism in healthcare openly. No one wanted to support a project that was telling this story. I had a dean of a well-known medical school tell me that if what I was saying was true then his whole life was a lie. He and many others were not able to face their own racism and how they perpetrated it and perpetuated it throughout the medical schools. It was not only frustrating to be met with this kind of dismissal, but each time this happened I saw precisely the reason it wasn’t getting better.

W&H: How did you get your film funded? Share some insights into how you got the film made. 

CRE: I was able to fund my film through the generosity of individuals, family, my own money, and foundations, which is essentially the regular independent hard road for a filmmaker. It was a particularly difficult challenge with a subject matter that no one would fund, and so it ultimately took 10 years to complete.

W&H: What inspired you to become a filmmaker?

CRE: I was eight years old when I saw “For Love of Ivy,” starring Sidney Poitier and Abbey Lincoln. It was the first time that I saw onscreen people that looked like my mother and father. Black people of integrity who wanted to move up in society and who wanted to give back to their own. I wanted to make those kinds of movies to inspire other people. I wanted to tell stories that were seldom seen onscreen. I wanted to change the narrative.

W&H: What’s the best and worst advice you’ve received?

CRE: The best advice I’ve gotten was from Soledad O’Brien, who told me to fire my whole staff because they were not working with me or supporting my vision of my work. This unapologetic commitment to my vision allowed me to step into my own fullness and recognize that I needed to build a team that understood and believed fully in that vision.

The worst advice I received was from the documentary community when I first started filming “The Deadliest Disease in America.” One of the major outlets for documentaries was interested in the project except they wanted to take the project in a direction to which my gut said “no.” I decided not to take that deal, but they said, “You are a first-time documentary filmmaker, take this chance and run with it.” I did not listen to that bad advice, and yes, it took me 10 years to finish the film, but now it is the film that I had a vision for and not some watered-down version.

W&H: What advice do you have for other women directors?

CRE: My advice is, you must remain true to your gut instincts because that is the foundation of your directing. That inner voice that tells you how to translate those words from paper through the vehicle of the actors and engage an audience on the journey. You are born a director and the most successful directors understand that this is their calling, and they stand in their truths.

W&H: Name your favorite woman-directed film and why.

CRE: I have several favorite films that have been directed by great women directors, including Penny Marshall and Ava DuVernay, but my favorite is “Water” by Deepa Mehta. How she made that film on such a small budget and still captured the authenticity of the pain, the sadness, and the hope of the widows of India was incredible. The beauty she extracted of love under the most dire circumstances to make a movie is beautiful and moving.

W&H: How are you adjusting to life during the COVID-19 pandemic? Are you keeping creative, and if so, how?

CRE: Like everyone, it has its challenges, but even more so for me because I am a quadriplegic. I am more vulnerable than most people and I depend on others physically.

As far as my creative self, I was already working in a virtual realm and had produced several pieces for streaming and audience interactions, so I was working in familiar territory — 2020 kept me very busy with people calling for the need of someone to produce online since they knew I already had that experience.

When we had a few moments where we could go out, I shot something for a small video outdoors. My creativeness as a writer is expanding and growing and I am slowly getting more of an interest as it has forced people to slow down.

W&H: The film industry has a long history of underrepresenting people of color onscreen and behind the scenes and reinforcing — and creating — negative stereotypes. What actions do you think need to be taken to make it more inclusive?

CRE: I am a triple threat: I am Black, I am a woman, and I live with a disability. I have applied to more fellowships and knocked on so many doors and yet I saw the Me Too movement open the door for white women. I saw the shame of the Oscars in 2016 open the door for more Academy members of color and a few more directors of color and a very slim chosen group of women.

There’s a whole new world and everybody is looking for profit/product, and right now I don’t think they care where they get it from. The actions that need to be taken to make it more inclusive is what is the difference between equality and equity.

In my case, I have a bigger resume than most of the up-and-coming white women that have been given tremendous opportunity, but the equity piece comes into place because I am in a wheelchair because I need extra physical support.

Someone once told me that I was a liability on set. My response was, the grip, who was 20 feet in the air with a toolbelt, is more of a liability than I am. Ironically, the next night on the shoot, two of the grips broke someone’s chimney while shooting. Now I ask, who was the greater liability?





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