Caring for a child with profound disabilities who needs near constant care can be an isolating experience for parents. That’s something Jessica Ronne is keenly aware of as the caregiver for her son Lucas, and she has sought to reach out to others in similar situations as an author and advocate.
When Nashville filmmakers Tom and Amanda Dyer learned of Ronne and her family’s story, they couldn’t forget about it. It became a passion project for the pair, who for three years shadowed Ronne and other parent caregivers to create the 45-minute documentary “Unseen: How We’re Failing Parent Caregivers and Why It Matters.”
“Caregiving happens at home in private — it’s just not something that you see or think about very often if it’s not your story,” says Amanda Dyer. “That’s where the documentary could be helpful to first open people’s eyes to some of the realities of caregiving.”
The Dyers learned about the plight of parents of children with severe disabilities as they were making the documentary, mirroring the experience of the viewer. They discovered that caregivers need more support — for their own mental health as well as help with care for their children and homemaking tasks. But they also learned that the wider public may not know it, because parents of disabled children often don’t have the energy to advocate for themselves.
“They don’t have the time or the capacity to share some of this,” Tom Dyer says. “They are overloaded as it is.”
People with disabilities often find themselves at the center of an inspirational story, about how they managed something “normal” like going to college or holding a job. But for children who have more profound disabilities, these sorts of accomplishments may not be possible. It was important to the filmmakers and to the families featured in the film that their experiences not be sugarcoated.
“Our motivation throughout the whole time was, we wanted to give caregivers permission to share that difficult side of the story as a way to open people’s eyes to that reality so they couldn’t just watch it and say, ‘Oh, they’re fine,’ ” Amanda says. “We wanted it to kind of hit you hard and be that raw look at it. It can be uncomfortable to watch, but you’re forced to reckon with what that brings up in you.”
There’s not just one solution for these caregivers, the Dyers found. Some parents would like to reenter the workforce, while others would like to be able to make their living as a caregiver — many don’t have either option. Kameron Dawson is the senior staff attorney for A Better Balance, an advocacy organization for caregivers, and served as a consultant on the film. She hopes to not only see Tennessee join 11 other states in offering paid medical and family leave, but also to see workplaces offer flexible scheduling and accommodations for any caregiver.
“It’s hard to take off weeks at a time and not receive pay, and that ultimately leads many caregivers to have no choice at all but to leave the workforce entirely because they need to take care of their family member,” Dawson says. “For so many it’s so hard to reenter the workplace because there are not many jobs that have those supportive workplace policies like paid family and medical leave.”
A common refrain the filmmakers heard from families is the lack of respite care — or short-term relief. Sometimes that means hiring a qualified nurse, and sometimes it just means a friend who is willing to provide temporary child care. When families are granted some money from the state to pay for respite care, there’s a scarcity of workers to do it.
“We talked to so many families who said that when they know they have respite care, that changes everything,” Amanda says. “That just a short break, if they know it’s on the horizon, or they just had a break, that can change everything and fuel them for the future.”
Beyond tangible help, those looking to support caregivers can offer social interaction. The Dyers say that when families with a severely disabled child are out and about, they can often feel people’s stares.
“It’s not just about standing offers, trying to stay out of the way or viewing from a distance, but just approach, say hello, be friendly,” Tom says. “They all feel so isolated. That was such a common thread.”
Adds Amanda: “That’s what we tried to focus on, was think about where you are, what your sphere of influence is when you watch this, and what you can do to make a positive impact for the caregivers that you know and that you interact with.”
