Dara Gordon was eight years old when her mother, an elementary school teacher, was diagnosed with multiple sclerosis—a disease of her nervous system that led to severe fatigue, emotional outbursts, difficulty using her hands, and progressive vision loss.
"I think that, as a kid, I really internalized a lot of it. I stuck by her side, and I felt like I was responsible for being a caregiver—even though I didn't even know what a caregiver was, or what that role looked like," says Gordon, now 27.
"I was cognizant of appointments, what her meds were, and what the emergency contacts were. That was stuff that was ingrained in me from a very young age, and I had no idea that I was doing stuff that other kids weren't. It didn't occur to me that I was taking on these roles. I just did them because I loved her so much and I thought that it was important."
When discussing children of parents with disabilities, academics often talk about "parentification"—a kind of role reversal in which children assume caregiving responsibilities before they're developmentally ready. These children can also face discrimination and stigma related to their parent's condition, particularly if it's mental health-related.
"I was always responsible for my brother and sister," says Seb*, 35, who grew up in Scarborough, a suburb of Toronto. Seb lived in a bungalow with his parents and two younger siblings for twenty years before his parents divorced. "It was something I just felt like I had to do as the oldest. I always felt like a buffer between the insanity of my dad and my brother and sister. Or the insanity of my dad and my mom. I spent a lot of time trying to stop him from beating her up."
Seb recalls seeing his dad change in the wake of the economic recession—his father's salary was cut in half, making it impossible to support the family. "My dad has an addictive personality. He was constantly drunk, constantly stoned, constantly high, and violent. Drug dealers were in the house all the time. He bred and fought pit bulls. Every scumbag in Scarborough hung out at my house."
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Seb admits that it's still hard for him to equate poor mental health with disability. When most people picture someone with a disability, they still think of the universal line-drawing of a person in a wheelchair. When disability rights activism in America hit its stride in the early 1970s, helmed by veterans' groups like Disabled in Action and the Paralyzed Veterans of America, the movement's most distinct images portrayed front line protesters in wheelchairs. But today, national and international regulations define disability much more broadly: Anything that limits a person's activities—including substance abuse and mental health issues.
Researchers who study children with disabled parents tend to offer two possible outcomes: Either they wind up more at risk of becoming maladjusted adults, or they become more resilient in the face of adversity. But this binary way of thinking—risk vs. resilience—may ignore a child's agency over his or her life, argues Brenda Gladstone, a health sociologist at the University of Toronto. Gladstone's work involves researching interventions with children of parents with mental health issues by focusing specifically on the perspectives of the kids themselves.
In her research, Gladstone realized a common experience: She calls it the "pity look"—the sage nod and furrowed brow on strangers' faces when listening to kids describe their experiences. "When young people tell their stories, and they receive that look, they shut down," Gladstone says. "They read that as people not being interested, this look that dismisses the truth of the story because they've heard it all before or they've already decided what your problem is."
A similar dismissal can apply in the form of uncalled-for assumptions from strangers. Max*, 29, moved to the US from the Ukraine when he was four. His father contracted polio as a toddler, leaving him with underdeveloped muscles in one arm and two legs. To get around, his father uses a cane, and has to "throw" his body to propel himself forward, which frequently causes him to fall.
"When he falls in public, everybody rushes to help him," Max says. "He really doesn't want help, and he wants to get up himself. I have to tell people that he's okay. They're these very tense, awkward moments."
Looking back on his childhood, Max remembers when his perception of his dad's disability began to form. "I think I understood it from a young age," he says. "The Russian word is 'invalid' which was a word I learned very early. I have this one memory, maybe in 6th or 7th grade, someone making fun of me for my dad being in a 'coma.' I just remember crying and being very upset."
Eva's* mother was diagnosed with a relapsing-remitting form multiple sclerosis after Eva was born, which primarily affected her mobility. Now 28, Eva recalls that, when she was growing up, her mother walked with a cane—and then, years later, a wheelchair.
"I was hyperaware of when she started using a wheelchair," she says. "I have a vivid memory of being 12, and [feeling] super nervous and ashamed. Are people going to be weird about it? Why was this happening?" Eva also recalls the way her mother's disability changed how people interacted with her. "Strangers love holding [my mom's] hand—it's so weird," she says, with a laugh. "She does not love it."
It can be cringe-worthy, too, for a child to see their parent become subject to infantilizing gestures, or dramatic expressions of pity when the use of a wheelchair is simply an ordinary part of everyday life. It's frustrating to see strangers treat the person who raised you as something less than a whole person.
By continuing to ask children of parents with disabilities for their perspectives, Gladstone hopes to help the field evolve—and resist the impulse to automatically label them "at risk."
"We spend a lot of time trying to 'fix' people," she says. "We need new ways of thinking about this."
*Source preferred to use first name only.
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