Podcast by and for Native Americans shines light on disability, mental health
2/20/23
By Christina Knott
Miranda Carman could not obtain a diagnosis of autism spectrum disorder for her son until he was past his fourth birthday. After years of waiting, she hoped her son’s diagnosis would finally open the door to intervention services.
But Carman, a Muscogee Creek Nation citizen and licensed clinical social worker, soon learned that there was only a single applied behavioral services provider available in her area of Oklahoma, and her insurance would not cover her son’s treatment. To access care, Carman left her job to work for the U.S. Indian Health Service, which offered insurance that would cover her son’s therapy.
It’s sharing stories such as this one that are the foundation of Black Feathers, a new podcast with ties to University of Kansas research that provides a platform for discussions on disability within Tribal Nations. The podcast is offering a live episode on March 21.
Crystal Hernandez, co-host of the Black Feathers podcast
Shauna Humphreys, co-host of the Black Feathers podcast
Hosted by Crystal Hernandez, Psy.D., M.B.A., and Shauna Humphreys, M.S., L.P.C., both experts in mental health, Black Feathers is a product of the State of the States in Intellectual and Developmental Disabilities Ongoing Longitudinal Data Project of National Significance and produced with support from the Kansas University Center on Developmental Disabilities (KUCDD), a part of the KU Life Span Institute. Episodes focus on Native American experiences with intellectual disabilities, learning disabilities, mental health, anxiety disorders and healthcare access, among other topics.
It is the only podcast by and for Native Americans focused on intellectual and developmental disabilities, Hernandez said.
“A lot of times, we are stripped of our voices, and services and decisions are made without us,” Hernandez said. “It's really important that we’re heard or seen for who we are, and that things are not built around us, for us—but are built with us, and through us.”
Hernandez is a Cherokee Nation citizen, a Latina, and a mother of an autistic son. She is the executive director of the Oklahoma Forensic Center and is a board member of the Autism Foundation of Oklahoma.
Hernandez brought Humphreys on board. Humphreys is a Chahta (Choctaw) Nation citizen, a licensed professional counselor and an advocate for mental healthcare in Tribal Nations. She is the behavioral health director for the Choctaw Nation of Oklahoma. She also brings her experiences as a mother of five children to the podcast.
Hernandez said there are many missed opportunities for more inclusive and more available services for developmental disabilities in Native American communities.
"We have to do better as a people and as a system,” she said.
Seeking information
Black Feathers grew out of a need to collect information about tribal communities across the U.S. in a way that was also culturally sensitive. Data is vital to show policy makers and others who may allocate resources what services are needed, and how supports need to be structured in a way to be culturally rooted and appropriate, Hernandez said.
Shea Tanis, associate research professor, leads the State of the States in Intellectual and Developmental Disabilities at KUCDD. In 2018, an advisory group to the project requested that researchers partner with Tribal communities to understand the journey of Indigenous people with intellectual and developmental disabilities and their families, Tanis said.
“These are not communities that generally get captured in our data,” she said. “So, the genesis came from our group wanting to investigate more.”
Tanis noted that there is an extraordinary lack of information about intellectual disabilities among Tribal community citizens. Often, they have been left out of research studies, leading to gaps in knowledge about prevalence and support needs both for the individual and the family.
Lack of Data: Autism Study
For example, only one-quarter of autism intervention studies provided data on the race and ethnicity of participants, according to a study published in Autism in January 2022 that looked at data from more 1,013 studies from 1990-2017. For those studies in which race was identified, the review found white participants made up 64.8% of the total portion studied. This was distantly followed by Hispanic/Latino participants at 9.4%, Black participants at 7.7% and Asian participants at 6.4%. There was only a single Native American participant identified across all studies surveyed.
As plans for the research through the State of the States in Intellectual and Developmental Disabilities project were under way, the COVID-19 pandemic prompted the group to think differently about how they could partner with Tribal Nations.
“What we did instead is started having a pivot conversation about alternatives,” Hernandez said. “And so, from that, I said, ‘Well, what about a podcast?’”
To gather data, the podcast has a two-prong approach. First, Hernandez and Humphreys said the podcast serves as a platform for people from any federally recognized Tribal Nation and from non-federally recognized Tribes to speak about their experiences, to feel less alone and be empowered to share their voice; it reaches people where they are.
Second, Tanis said, a form on the Black Feathers website offers a space for Tribal citizens to contribute about their experiences related to disabilities.
“It will help us build critical mass to drive innovation toward culturally-rooted services and supports through data,” Tanis said.
Storytelling focus
Hernandez said that she and Tanis have had many conversations about meaningful ways to reach in, align and create stories out of data and out of stories themselves. Personal stories, they agreed, would be central to the work.
“In the native culture, storytelling is huge. And a podcast is maybe a modern way of storytelling.”
“In the native culture, storytelling is huge,” Humphreys added. “And a podcast is maybe a modern way of storytelling.”
The hosts said they seek to provide a space for honest, authentic conversations to create psychological safety in the podcast room, so that people can be who they are openly.
As a guest of the third episode of the podcast, Carman spoke about how her son, like many children with autism, loved the water. Also typical of autistic children, he loved to wander.
“It was the scariest thing as a parent,” said Carman.
Carman’s story illustrated the daily stresses of parenting an autistic child in a way that raw numbers don’t always reveal.
Hernandez said that swimming and water safety is “one of the thousands of things” on her mind as a parent of an autistic child as well.
“I mean, the magnitude of that stress, and that anxiety, is hard to describe,” Hernandez said. “It's just a level of worry that unless you've experienced it, you'll never understand it. And I think having these personally touched individuals share their stories, it really validates it for a lot of people listening.”
Humphreys hopes the podcast helps lead to better services for people who need them. “And not just our family members, but our whole tribe, our communities, the state, the United States. Let’s just keep it going. Let’s hope it has a ripple effect.”
Added Hernandez, “And it's okay to be who you are and how you are. We deserve that space. And we deserve to feel well and whole.”