A Mother and Daughter Bound by Disability

Parenthood is a protracted form of unrequited love. What’s good for the kid (early-morning ballet classes, for instance) seldom makes room for the parent’s aspirations (sleep). As children’s self-reliance grows, so does their loss of interest in the aging adults whose home they begrudgingly inhabit. Eventually, children do leave and move on to experience a life of freedom—and, with luck, so do their parents.

But for the mother and daughter at the center of Louise Monlaü’s thought-provoking, cleverly titled documentary “Rocío and Me”—both are named Rocío—parenthood and childhood have no end. Rocío the daughter desperately wants her independence. She craves going to parties and meeting friends for coffee without having to ask permission from her parents, with whom she lives, in Mexico City. A romantic soul, Rocío also dreams of running away with the boy she loves. “I want to live by the sea. On my own,” she tells the camera, smiling in anticipation. “With my baby. With my Juan.”

But Rocío has Down syndrome, and at twenty-nine she still very much relies on her mother’s care to get by. “It’s something that I’m not sure she understands,” the mother says, adding that there are too many dangers in the world for someone who “can’t make important decisions” to be on her own. For Rocío the mother, it means a lifetime of dedication to her daughter.

Each year, about one in seven hundred babies are born with Down syndrome in the United States; roughly half of them also have a congenital heart defect. Most families provide health care at home, and many report financial difficulties, with one parent often having to stop work because of their child’s condition. Still, experts say that adults with Down syndrome have never been more independent, as they increasingly enroll in college programs and a growing number of businesses hire people with disabilities. This has coincided with a dramatic rise in the life expectancy of people with Down syndrome, which has more than quintupled during the past sixty years. But with longevity have come new challenges, including the risk of outliving their caregivers.

Monlaü, who grew up in Paris, was drawn to the subject by her vivid memories of a childhood friend with Down syndrome. “His universe fascinated me for years: his eccentricity, his sweetness, his humor,” she told me recently, by e-mail. Monlaü and her friend eventually grew apart, and throughout the years her recollection of their carefree bond took on a new perspective, tinged with the drama of her friend’s family dynamic.

“A completely different story appeared to me, that of the adult world, that of parents who deal with disability on a daily basis,” she said. This dual reality lies at the core of Monlaü’s documentary. “The two women dream of being somewhere free and independent,” she said, “but are forever bound by disability.”

There are times when that fate is not so clear. The daughter is part of a team of synchronized swimmers with Down syndrome called the Sirenas Especiales, or Special Mermaids, and, in witnessing her dedication to the group and their training, one can easily picture her living by herself. The same is true when, in the intimacy of Rocío’s red-lit bedroom, Monlaü shows her dancing with frenzy, shaking her long hair all around like there is no tomorrow. At other times, however, Rocío bears all the marks of a young child. Upon exiting her mother’s car, back from a trip to the swimming pool, she takes something out of her pocket—possibly a candy wrapper—and eagerly hands it to her mother. At the dinner table, after her mother asks her to close her mouth while chewing, Rocío sneers toward her and begins masticating with her mouth wide open, a teen-age-like act of disobedience that feels more silly than rebellious.

Monlaü’s keen eye captures these moments in their complexity, without editorializing them or yielding to pathos. The mother’s deep sense of sacrifice, for example, permeates every shot, but the film falls short of sanctifying her. At times, she even comes off as overly harsh, as when she explains that she’d prefer if her daughter “didn’t have any relationships,” because she always comes out of them heartbroken. “In reality, the one who suffers is me, more than her,” the mother says.

“The subject of maternal ambivalence is a matter really dear to my heart,” said Monlaü, who gave birth to her first child three weeks before she started editing her documentary, in early 2021. Back then, Monlaü kept obsessing about finishing the film, and was having a hard time adjusting to her new role as a parent. But the openness with which the elder Rocío talks about her maternal struggles turned the editing phase into a form of therapy. “Desacralizing motherhood, showing its dark face, talking about the difficulties of mothers in our societies remain a real challenge,” she said.

In the film, the conflicting aspirations of both Rocíos seem to come together during the daughter’s weekly synchronized-swimming trainings. The daughter never seems as free as when she is practicing her moves in the pool, and her mother, never as alive as when she is observing her from the bleachers or fixing her daughter’s hair before a competition. “To see how all the work that she and I have done was worth it,” the mother says, with teary eyes, of her daughter getting on the podium. “Those moments, to tell the truth, I wouldn’t change them for anything.”

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