LAWRENCE — Miranda Carman couldn’t get an autism spectrum disorder diagnosis for her son until his fourth birthday. After years of waiting, she hoped her son’s diagnosis would finally open the door to interventional services.
But Carman, a Muscogee Creek Nation citizen and licensed clinical social worker, soon learned that only one provider of applied behavioral services was available in her area of Oklahoma, and that her insurance would not cover her son’s treatment. To access treatment, Carman quit her job to work for the US Indian Health Service, which offered insurance that would cover her child’s therapy.
It’s sharing stories like this that created the foundation for “Black Feathers,” a new research-related podcast from the University of Kansas that provides a platform for discussions about disability within Tribal Nations.
Hosted by mental health experts Crystal Hernandez, who has a doctorate in psychology, and Shauna Humphreys, a licensed professional counselor, “Black Feathers” is a product of the States State in Intellectual and Developmental Disabilities Ongoing Longitudinal Data Project of Importance nationally 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 Americans’ experiences with intellectual disabilities, learning disabilities, mental health, anxiety disorders, and access to health care, among other topics.
It’s the only podcast by and for Native Americans focused on intellectual and developmental disabilities, Hernandez said.
“Many times, we are deprived of our voices and services and decisions are made without us,” Hernandez said. “It’s really important that we are 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, Latina, and 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 aboard. Humphreys is a Chahta Nation (Choctaw) citizen, a licensed professional counselor, and an advocate for mental health care in tribal nations. She is the director of behavioral health for the Choctaw Nation of Oklahoma. She also shares her own experiences as a mother of five in 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,” he said.
I’m looking for data
“Black Feathers” was born out of a need to gather information about tribal communities across the United States in a way that was also culturally sensitive. The data is critical to showing policymakers and others who can allocate resources what services are needed and how supports should be structured to be culturally ingrained and appropriate, Hernandez said.
Shea Tanis, a research associate professor, heads the State of the States in Intellectual and Developmental Disabilities at KUCDD. In 2018, a project advisory group asked researchers to work with tribal communities to understand the journey of Indigenous peoples with intellectual and developmental disabilities and their families, Tanis said.
“These are not communities that generally get captured in our data,” he said. “So, the genesis came from our group wanting to investigate more.”
Tanis noted that there is a striking lack of information about intellectual disabilities among citizens of tribal communities. They have often been excluded from research studies, leading to gaps in knowledge of prevalence and support needs for both the individual and the family.
For example, only a quarter of autism intervention studies provide data on participants’ race and ethnicity, according to a study published in Autism in January 2022 that examined data from more than 1,013 studies from 1990 to 2017. For those studies in which race was identified, the study found that white participants made up 64.8% of the total portion studied. This was closely followed by Hispanic/Latino participants at 9.4%, Black participants at 7.7%, and Asian participants at 6.4%. Only one Native American participant was identified in all studies reviewed.
While plans for research through the State of the States in Intellectual and Developmental Disabilities project were underway, the COVID-19 pandemic prompted the group to think differently about how they could partner with Tribal Nations.
“What we did instead was start talking about alternatives about alternatives,” Hernandez said. “And so, from that, I said, ‘Well, how about a podcast?'”
To gather data, the podcast takes a two-pronged approach. First, Hernandez and Humphreys said the podcast serves as a platform for people from any federally recognized tribal nation and non-federally recognized tribes to talk about their experiences, to feel less alone, and to be empowered to share your own voice; it reaches people where they are.
Second, Tanis said, a form on the Black Feathers website provides a space for tribal citizens to contribute their experiences related to disabilities.
“It will help us build critical mass to drive innovation towards culturally ingrained services and supports through data,” said Tanis.
Focus on storytelling
Hernandez said she and Tanis had many conversations about meaningful ways to reach, align and create stories from data and stories themselves. Personal stories, they agreed, would be central to the work.
“In native culture, storytelling is huge,” Humphreys said. “And a podcast is perhaps a modern way of storytelling.”
The hosts said they try to provide a space for honest and authentic conversations to build psychological safety in the podcast room, so people can openly be who they are.
Guest of the third episode of the podcast, Carman told how her son, like so many children with autism, loved the water. Also typical of autistic children, he loved to wander.
“It was the scariest thing as a parent,” Carman said.
Carman’s story illustrated the daily stresses of parenting an autistic child in a way that raw numbers don’t always reveal.
Hernandez said swimming and water safety are “one of thousands of things” on her mind as a parent of an autistic child as well.
“I mean, the extent of that stress and anxiety is hard to describe,” Hernandez said. “It’s just a level of concern that unless you’ve experienced it, you’ll never understand. And I think the fact that these personally touched people are sharing their stories, it really validates that for a lot of people listening.
Humphreys hopes the podcast will help lead to better services for people who need them. “And not just our family members, but our entire tribe, our communities, the state, the United States. Go on. Hopefully it will have a knock-on effect.”
Hernandez said, “It’s okay to be who you are and how you are. We deserve that space. And we deserve to feel good and whole.”
The fifth episode of “Black Feathers” will be released on February 20 through a variety of podcast apps. Listeners can also register to attend a live webinar version of the podcast taking place on March 21.