We spoke with Jodi Michelle Cutler, author and film producer, about her production team’s commitment to representation in the forthcoming film Rally Caps.
A Missed Diagnosis
When Jodi Michelle Cutler’s son, Jordan, was born in Baltimore, Maryland, in 1996, newborn hearing screening—uncommon at that time—was not performed.* Jordan’s hearing loss went undiagnosed, and when Jodi and her husband, Luca, expressed their concern that Jordan was not babbling at eight months old, they were told that children of bilingual parents can often experience language delays.
After the family moved to Tuscany, Italy, Jordan’s new pediatrician realized the 10-month-old infant was not responding to sound and sent him for an audiological consultation. Jordan was diagnosed with profound bilateral sensorineural hearing loss in September 1997, immediately began speech therapy three times a week and received hearing aids.
“He was very frustrated and extremely curious,” says Jodi, “so the [speech work] provoked a lot of temper tantrums due to his communication difficulties.”
A Child’s LSL Progress Leads to Creative Opportunities
When Jordan was four, Jodi’s father sent her a short story he had written about breaking his nose as a child at little league tryouts.
“After reading it, I said, ‘Dad, this short story could actually become a book,’” remembers Jodi. “It was extremely frustrating, because at the time, taking Jordan to speech therapy sessions three times a week and working on listening and spoken language (LSL) at home did not lend to writing a book.”
It was not until Jordan received his cochlear implant (CI) at age eight that Jodi felt she could devote the time to telling her father’s inspiring story.
“Thanks to the cochlear implant, years of habilitation with hearing aids and the fact that he was extremely intelligent,” says Jodi, “[Jordan] immediately became a successful CI user. Seeing my son happy and thriving inspired me to want to create a strong, deaf character with cochlear implants in literature, so that he could identify with that character.”
With her experience writing a blog—An American Mom in Tuscany: Jordan’s Cochlear Implant Story—to raise awareness about the benefits of cochlear implants, Jodi was eager to get started on her first novel. In 2005, she and her father, Stephen J. Cutler, got to work co-writing their novel over email between their homes in Tuscany, Italy, and West Palm Beach, Florida.
Rally Caps Brings LSL Center Stage
Rally Caps, a novel-cum-independent film, is the story of a young pitcher named Jordy who sustains a traumatic injury playing baseball which prevents him from going back to the mound. Meeting another baseball player, Lucas, at summer camp, reignites Jordy’s love of the sport as they become fast friends and a formidable pitcher/catcher duo.
The forthcoming film, starring Judd Hirsch and Amy Smart, features children who are deaf playing the parts of the characters who are deaf. Colten Pride, who has unilateral hearing loss plays Lucas, and Noelle Pride, who has bilateral hearing loss and uses two cochlear implants, plays Niki in the film. Colten and Noelle’s father is Curtis Pride, a retired Major League Baseball player who is also deaf. (Curtis spoke with Clarke in a recent issue of Clarke Speaks magazine. See page nine, “Role Models Talk Motivation.”)
This type of representation is sorely lacking in the media and entertainment industry. With roughly 26% of the US population living with disabilities, only 8% of family films in 2020 featured a lead with a disability—and that was a historic high. Additionally, in a white paper published by the Ruderman Family Foundation in 2016, researchers note that “more than 95% of characters with disabilities are played by able-bodied actors on television.”
“We wanted to make sure our deaf characters were played by actors with hearing loss,” says Jodi. “And since this was the first feature film for both Colten and Noelle, our director Lee Cipolla worked many hours helping them learn their parts.”
Attention to Detail for Authenticity and Acceptance
As a parent who witnessed a dramatic improvement in her son’s quality of life after receiving his cochlear implant, Jodi also felt strongly about showing the technology that helps children like Jordan live their lives to the fullest. While hearing technology is used by millions of people worldwide, these devices and their profound impact are seldom seen in media portrayals. Jodi and her production team sought to address this.
“We also wanted to focus on how technology makes life accessible for those with hearing loss,” she explains. “Included in the movie are devices that allow Lucas and Niki to go in the water, direct streaming cell-to-CI [technology connecting sound, phone calls and music from mobile devices directly to an individual’s sound processors] is represented, as well as Roger technology to facilitate listening in noisy environments.”
Seeing these devices helps children with hearing loss feel seen and represented, and it also helps children with typical hearing learn what they are and why they’re used. “I want kids to look at another kid with CIs and say, ‘Oh, that kid’s just like Lucas or Niki from Rally Caps,’” says Jodi. “I want our kids to not have to explain. I want them to be seen and understood without always having to explain.”
Jodi believes that increased representation in movies and media will lead to increased awareness and acceptance of children who are deaf or hard of hearing.
“People are afraid of what they don’t understand,” she says, “and this lack of comprehension creates and reinforces stigma. By creating the characters Lucas and Niki and portraying them as typical kids first and foremost—that also happen to have hearing loss and wear cochlear implants—our goal is to stimulate conversations. The only way to effectively and permanently smash stigma is to create a safe place to hold those conversations again and again, starting at the family dinner table and continuing at school.”
With both a novel in print and a film in production, Jodi hopes their moving story will continue reaching more children and families.
“We wrote Rally Caps to make sure children like my son were seen and represented in literature,” says Jodi, “and we are proud that Rally Caps the movie will reach an even broader audience to represent LSL [listening and spoken language] in media and film.”
Written for the screen and directed by Lee Cipolla, Rally Caps is based on Stephen J. Cutler & Jodi Michelle Cutler’s novel of the same name. All three serve as producers on the film along with Amy Williams, Katherine Borda, William Garcia, Curtis Pride, Eileen Jones and Gary Sales.
*Before the Newborn and Infant Hearing Screening and Intervention Act was passed by Congress in 1999, fewer than 10% of newborns in the US were screened for hearing loss. According to data from the CDC, more than 98% of newborns in the US were screened for hearing loss in 2019.
Behind the Scenes with a Clarke Team Member on the Set of Rally Caps
Caroline Oberweger, director of foundation relations at Clarke and a cochlear implant user, shares her experience as an extra on the set of Rally Caps.
How did you become extras on the set of Rally Caps?
Rally Caps was filmed at my children’s sleepaway camp. When I read that the film was about a young boy who is deaf and uses a cochlear implant, I immediately jumped at the chance to be a part of this story, even if just in a small way.
What is your hearing loss diagnosis and what technology do you use to access sound?
I was diagnosed with a moderate-severe sensorineural hearing loss at the age of 10. I wore hearing aids for three decades until my hearing loss progressed to profound in my late thirties. I got my first cochlear implant 10 years ago at age 38, and the second two years later.
As a person with hearing loss using listening and spoken language (LSL), do you feel represented in the media?
I have been seeing an increasing number of stories about hearing aids and cochlear implants (CIs) in the news the past few years, and that’s terrific. But as a CI user, I’ve yet to see myself represented in film and television. I’m really thrilled that Rally Caps will be showcasing a character who hears and speaks with the help of a cochlear implant. I think there is still an assumption among the public at large that people who are deaf communicate solely through American Sign Language. Rally Caps counters that perception.
What are you most looking forward to about seeing this film?
I’m proud that the film centers around a boy who is deaf and uses a cochlear implant, as I’ve never seen an actor, or character, with a CI on film. I’ve read the book that the movie is based on and found it very touching; the theme of overcoming obstacles and embracing being different is one that resonates with me very personally. Of course, seeing my children on film — at their very own summer camp, no less! — will be thrilling as well.