This blog is part of our Working Better Together series and was adapted from an interview with Chanda Freeman, Health Policy and Advocacy Manager at the Tennessee Justice Center. This blog series is intended to provide our Health Law Partnerships with a platform to highlight successes, challenges, and innovative approaches to furthering health access and health equity in the states where they work. This interview has been edited for length and clarity.
Hello, My Name is Andy DiAntonio, and I am the Director of Communications at the National Health Law Program. Today I am interviewing Chanda Freeman, Health Policy and Advocacy Manager at the Tennessee Justice Center, as part of NHeLP’s Working Better Together blog series. Chanda, we are thrilled to have you with us today. Can you speak a little about the historical and current landscape of health care in Tennessee?
Historically people who have lived experiences with Medicaid and/or health disparities in certain areas have provided insight into the lives, resiliency, and hope that keeps people alive and in community with one another.
Every year, thousands of people die preventable deaths because they can’t afford adequate health care. Currently, over 300,000 Tennesseans live in the health care coverage gap, meaning they lack insurance to help cover medical costs. That’s over 300,000 Tennesseans who must regularly choose between providing essential support for their family, like keeping food on the table and paying their electric bill, or visiting a doctor.
The vast majority of Tennesseans agree that the government should expand health insurance options so everyone can afford quality coverage. That’s right: eighty-seven percent of Tennesseans want the government to expand quality coverage to more of their neighbors, and that number is even higher in rural areas.
The failure to expand coverage is no longer an option we are willing to accept. We are urging our neighbors who have lived experience with Medicaid and health disparities to take action to close the gap by using their voices to demand that our State Legislators create a pathway for all Tennesseans to have permanent, comprehensive coverage!
Why is it so important for you and the Tennessee Justice Center to amplify the voices of people with lived Medicaid experience and those who have experienced health disparities?
We believe that storytelling reminds us of the humanity of people and that amplifying these folks’ voices does a couple of important things in terms of advocacy. One, we can better influence the public narrative by inserting the voices of socially or economically vulnerable populations. These voices remind the public that this is not just about numbers or abstract policies but about the actual lives of people in our state. We’re talking about the quality of life and health outcomes of real people in our communities.
Second, we think amplifying lived experiences is essential to raise concerns about systemic issues. The fact is, there are stark racial disparities in health outcomes for residents of states, like Tennessee, that have not expanded Medicaid. We know in Tennessee that Black residents are twice as likely to be uninsured, resulting in higher rates of heart disease, cancer, and diabetes. We also know that sixty percent of folks living in the Medicaid Coverage Gap in Tennessee are Black, Latino, Indigenous, or Asian, and that this gap in access to care has been nothing short of devastating for some of these communities.
Collecting these stories to hear people’s lived experiences is important, but I’m sure it’s challenging to get them! What are some of the reasons that people don’t share their stories?
We’ve learned a lot about why people don’t share stories. In one of our workshops, a woman from a faith community summed it up, saying, “Hope deferred makes the heart sick.” And to me, that means even people desiring change might not share their experiences because they have typically lost hope in the power of storytelling.
We’ve also learned that people don’t share out of embarrassment or shame. They are concerned about their personal situation and about having to ask for help. Some people are worried about what others think about them, especially if they don’t know where to seek help. And then some people feel that their story is inadequate or feel that they can’t deliver it in such a way that will translate into action.
I’ve also heard from people concerned about literacy skills who are worried about writing out their stories. The most striking thing I’ve learned while collecting stories is that people don’t think their stories matter. They hear about other people’s lives, and they think to themselves, “Well, my situation is not as bad as what I hear, so maybe it doesn’t matter.”
After doing this work, I’m sure you’ve learned so much about how we move past these barriers to collecting and sharing lived experiences. Can you talk a little bit about that?
Yes! So one of the ways that we work past barriers for sharing experiences is to try to take advantage of current events and connect them to our issues when possible. For example, earlier this year, we partnered with Tennesseans for Historical Justice. We held a webinar encouraging people to take action by inserting themselves into the public narrative by sharing their stories. And we had the opportunity to use the Emmett Till movie, which was premiering as a prime-time special, as the backdrop for the webinar. We focused on Mamie Till’s courageous story and, consequently, the impact of her story and the passage of the Emmett Till anti-lynching bill of 2022 to show the significance and importance of even just one story.
Right now, we are collaborating with Oprah Winfrey and the Smithsonian Institute to work with Historically Black Colleges and Universities (HBCUs) to show another film, The Color of Care. Each of these viewings will be followed by a panel discussion, and within those discussions, one of the calls to action will be to share your story about health care.
Overall, I’d say to other advocates that we need to be sensitive to “chatter.” In military movies, we always hear about chatter, and all these alert levels go up when they hear a certain amount of chatter. And in the health policy and health equity space, I feel the chatter should be the experiences that our clients and other people we represent are having. We should amplify the chatter and make sure that the public, the media, and our elected officials are picking up on it. We are the chatter makers; we have to be the chatter carriers and help share the experiences of the people we stand with.
Well, I love that. The chatter makers, the chatter carriers. Thank you, Chanda, for sharing your advocacy with us today and talking through the fantastic work you and the Tennessee Justice Center team are doing.
Working Better Together Blog Series
The Working Better Together blog series gives our Health Law Partners a platform to highlight successes, challenges, and innovative approaches to furthering health access and health equity in the states where they work. Find other blogs in the series here.