The Quiet Cajuns

In Acadiana, a rare inherited disorder tells a story of ancestry, adaptation, and enduring identity.

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What is it to be Cajun, if you cannot hear a fiddle play? If you have never heard a single French word? 

“You look at our cultural identity, the foodways, the music, dance,” said folklorist and filmmaker Connie Castille, who has studied the intricacies of Cajun and Creole lifeways in films like T-Galop: A Louisiana Horse Story and Ancestral Artistry: The Influence of Africans and Creoles of Color on Louisiana Architecture. “It’s like, what does it actually mean to be Cajun? Most of these people, for example, aren’t going to be able to learn to speak French.” 

The people she is referencing are those who live with the Acadian form (USH1C) of Usher Syndrome—an inherited disorder characterized by profound deafness at birth, balance problems, and progressive vision loss. The condition is a rare one—considered an “orphan disease”—affecting between 20,000 and 40,000 people in the United States in total. But there are only two hundred documented people in the world who carry the Acadian variant, almost all of whom live in Louisiana. 

The high prevalence of USH1C in Louisiana is the result of a “founder effect”—a genetic mutation brought by the original Acadian settlers in the eighteenth century, which was then genetically isolated over generations of intermarriage between families within the same “founder” group. Biologist Phyllis Griffard points out that it was not “cousins marrying cousins,” but instead the fact that “the first Acadians, those 6,000 people who came, had a high frequency of this allele. They then married other families within the Acadian group, and the gene persisted.” Even today, a significant percentage of people of Acadian descent marry other people of Acadian descent, increasing the odds of having a child with Usher Syndrome.

Castille and Griffard are both producers of the short documentary, The Quiet Cajuns, which premiered on Louisiana Public Broadcasting on September 26 and tells the story of the subculture of the “DeafBlind” community in Acadiana, as well as the work currently being conducted by Dr. Jennifer Lentz at LSU School of Medicine’s Laboratory for Usher Syndrome Research. 

“You look at our cultural identity, the foodways, the music, dance. It’s like, what does it actually mean to be Cajun? Most of these people, for example, aren’t going to be able to learn to speak French.” —Connie Castille

Griffard approached Castille with the idea for the film, hoping to educate people on Usher Syndrome while also exploring cultural aspects of the condition. Joining biology to cultural identity has been a core tenant of Griffard’s work as an educator at the University of Louisiana-Lafayette, especially through her educational media initiative OurBio. “It’s about how biology has shaped our biography,” she explained. “So that’s why I was interested in using Usher as a genetic example. There are other [conditions], but this was something I understood and had connections to people, and it’s got so many interesting characteristics.” 

Castille, despite growing up in Acadiana, had never encountered Usher Syndrome, and was totally unaware of its connection to Acadian history. “So I said, ‘Yeah, let’s make a documentary to share this story,’” she said. 

The film centers on two Louisiana individuals with the USH1C gene. Dan Arabie, at fifty-seven years old, is completely deaf and blind. With humor and warmth, he shares his story by way of sign language and a tactile interpreter, beginning with the line, “I was born a Cajun.” The story of Hunter Faucheaux, aged six and born deaf, is told by his mother, Elise. 

The film, therefore, showcases a cultural shift currently taking place within the collective experience of Usher Syndrome in Louisiana as technological advances continue to evolve. Arabie tells of how his parents didn’t learn he was deaf until he was fifteen months old, when he’d run to the window every time a nearby train would pass. “My parents started to realize I was feeling my environment, not hearing it,” he says. 

[Read this: Birding Blind: Turns out, you can learn a lot about a bird from its song] 

At age six, Arabie’s parents sent him to the Louisiana School for the Deaf in Baton Rouge, where he learned sign language and became immersed in Louisiana’s deaf community there. He received his Usher diagnosis as a teenager, around the same time he was noticing his eyesight diminishing. Learning that he would eventually become completely blind in the future allowed him the opportunity to prepare. While he could still see, he learned braille, as well as tactile interpreting, and how to use a cane. He began to spend time with other DeafBlind people, training in how to accomplish everyday skills without the ability to see or hear. Some strategies include adding braille labels on clothing describing things like color, and learning to fold cash in particular ways to indicate amount. Today, Arabie and his wife, who is also DeafBlind, are largely independent. Through the Louisiana Commission for the Deaf’s Support Service Provider Program—which Arabie himself advocated for as a resource for the local DeafBlind community—he gets monthly access to an aid who can provide tactile translations and transportation. 

Hunter’s experience as someone growing up with Usher Syndrome in the twenty-first century is drastically different. His parents learned of his deafness within a few days of his birth, and two weeks after his first birthday, he received cochlear implants. The ability to hear has granted Hunter access to a world most deaf children fifty years ago couldn’t imagine. When Arabie’s parents brought him to Cajun music festivals growing up, he was often bored, waiting in the car. Hunter, by contrast, takes hip hop classes and plays the piano. “That’s what makes him happy,” said Elise. 

“Of course, it’s absolutely a good thing that these kids have access to the exact same educational opportunities and experiences as hearing children,” said Griffard. “But on the other hand, unless they learn sign language, they don’t get to experience being a part of Louisiana’s deaf culture.” As is so often the case with technological advances, even when they are positive, something beautiful is lost in the shift. In the film, we see footage of Arabie smiling and communicating, via clutched, moving hands, with other DeafBlind individuals at a gathering at a local Starbucks. “And that aspect is important, too,” said Griffard. 

Because of genetic testing—which today is encouraged for all parents whose children are born deaf in Louisiana—Elise knows that the day is likely coming when Hunter will begin to lose his sight. Every birthday, she can’t help but think, “That’s 365 steps closer to possible vision loss.” 

[Read about other 2025 documentary films featured in our "Film & Literature" issue.] 

In the meantime, she has connected with other families of children with Usher Syndrome, started a 5K fundraising effort, showered Hunter in prayers, and worked to ensure that his eyes collect as many beautiful memories as possible while they still can. “I used to pray for a cure … while I still pray for a cure, I just pray for him to be happy,” she said. 

Together, Arabie and Hunter’s stories demonstrate a dynamic portrait of a challenging, but shared, experience within the Acadian story. At some point, Arabie describes his heightened sense of smell, and how it helps him to identify who enters his home, or where to find the “lunch counter.” 

“Perhaps,” said Castille, “these Cajuns even have a richer cultural identity, in the categories they can participate in, than we do.” 

You can stream The Quiet Cajuns for free at pbs.org.