Why Parents With Disabilities Are So Often Set Up to Fail in Society

Alaina Leary
·10 min read
Photo credit: courtesy
Photo credit: courtesy

When I was a kid growing up outside Boston, my mom walked me about a mile to and from school everyday unless my grandfather, Poppy, could drive us. Those walks were one of the best parts of my days. On the way home, I’d beg her to stop at the corner store for candy and other treats, and then we’d sit and eat them in the park before heading home. My mom couldn’t drive because of a visual impairment (she also had a genetic disability called Ehlers-Danlos syndrome, which can cause chronic pain and fatigue), so we walked almost everywhere — to the grocery store and then back, our rolling cart full of groceries; to the bus stop and train station to get to medical appointments; and to my best friends’ houses for sleepovers.

I knew other kids had parents who could drive. They packed their groceries into the trunks of cars and the back compartments of minivans, which just seemed to me like an unnecessary step: My mom and I unloaded them right out of the cart into the fridge and cabinets, sometimes sampling the goodies before putting them away.

Photo credit: courtesy
Photo credit: courtesy

I didn’t realize having a disabled parent could be considered a cause for concern until I was in early grade school, when my mom had a confrontation with one of my teachers. I had recently been diagnosed with autism and was struggling to stay engaged in class. The teacher had begun to limit the number of bathroom breaks I could take during the day and forced me to sit on my hands to keep me from fidgeting. What I was actually doing — rocking my hands and feet back and forth to help keep myself focused — is called self-stimulating, or stimming, a natural regulation behavior for people on the autism spectrum. My mom objected, and the school eventually relented. But a few weeks after that, someone from the Department of Social Services paid us a visit. As I learned later, the teacher, after meeting with my mother, had expressed doubts about my mom’s ability to take care of me. Luckily, after our caseworker visited us a few times, she decided my mom was a perfectly capable and resourceful caregiver. But many parents with disabilities don’t get the same consideration.

Current research estimates that about one in 10 parents in the U.S. has a disability. And though the Americans with Disabilities Act legally protects disabled parents from discrimination in child welfare services, many still struggle under the perception that they’re inadequate parents. Not all parents can safely care for their children, whether they’re disabled or not, but research from the National Council on Disability shows that child-removal rates are as high as 80% for parents with psychiatric or intellectual disabilities. And 13% of physically disabled parents have reported discrimination in custody cases. By law in nearly two-thirds of states, disability can be cited as a strike against a parent in a custody case and used as grounds for termination of parental rights.

“Parents with disabilities are often set up to fail,” says Robyn Powell, Ph.D., an attorney and a researcher at the National Research Center for Parents With Disabilities. “We can see the bias really clearly in cases where parents with disabilities have their children removed right after birth.”

As opposed to a system that provides assistance only to families who are perceived as struggling, Powell believes amore accessible system could help make life easier for all families, whether a newly single parent is looking for childcare or a disabled parent wants to learn about accessible community sports their kids can get involved in. “We need to create a child welfare system that actually supports families,” she says. “We need to start presuming competence.”

In addition to custody concerns, disabled parents also face access barriers in society as a whole. School events, transportation, stores and community centers often aren’t accessible to people with disabilities. Issues include events without an American Sign Language interpreter, movies that don’t offer closed captioning, sidewalks without curb cuts, public transportation without wheelchair lifts or elevators and restaurants and facilities with stairs instead of ramps, among many others.

Heather Watkins, a parent and disability rights activist from Boston who has a form of muscular dystrophy, says most of the barriers she faced while raising her daughter involved extra-curricular school activities such as sports. She sometimes had to watch her daughter play basketball from the top of the stairs instead of going into the stands. “You’re constantly holding your breath or making phone calls to find out if things are accessible,” Heather explains. “It feels like you’re an after thought or you weren’t thought about at all.”

Photo credit: courtesy
Photo credit: courtesy

Ellen Ladau of Long Island, NY, has experienced both ill-informed criticism and unexpected support as a disabled parent. Ellen has Larsen syndrome, a genetic disorder that causes joint dislocation, bone abnormalities and muscle weakness. In 1991, she gave birth to her daughter, Emily, at a Suffolk County hospital. Emily, who had been diagnosed with Larsen syndrome in utero, was then sent to the NICU. In that county, services and support are offered to the parents of all babies in the NICU (many hospitals elsewhere provide them only after confirming a newborn’s disability). For Emily, this meant home-based physical therapy, speech therapy and occupational therapy. “I was very fortunate that services were offered to me as opposed to me having to hunt for them,” explains Ellen. Emily began receiving in-home support at around 3 months old. Once she began going to a preschool for disabled kids, she received in-school services and Ellen was introduced to a parent support group that provided her with a community of people she could talk to about raising her daughter.

Still, Ellen’s disability sometimes leads to unwanted attention and insensitive comments. Once, Ellen says, she and Emily were leaving a doctor’s office and Emily happened to be in a half-body cast after a procedure to reduce the level of dislocation in her hips and knees. “Look what that mom did to her baby,” a passerby commented. “I was so embarrassed,” says Ellen.“I was already struggling with a lot of guilt about having passed on my disability.”

Since Larsen syndrome is progressive in nature, Emily, now 29, says that perceptions about her mom’s disability have changed over time. Ellen was ambulatory when Emily was younger, but now that they both use wheelchairs, “it’s the ‘I can’t believe you two are out on your own’ perspective,” Emily says. “There’s a lot of judgment passed on us now that wasn’t passed on us when we were younger.” The pair are sometimes approached by curious bystanders while they’re getting out of the car in parking lots. “We have a whole system for getting in and out of my car,” Emily explains. “Clearly if we have made it to a parking lot somewhere, we know what we’re doing.”

Despite the challenges, kids raised by one or more disabled parents often benefit immensely from the experience. “They’re unbelievably resilient,” says Powell. “They learn the importance of independence and interdependence.”

Just ask Kay Wattz, 27, Heather Watkins’s daughter and a hip-hop artist. “Growing up with my mom taught me to appreciate every moment,” says Kay. “We live in such a fast-paced world that most people forget to just take it all in. We naturally moved at a slower pace.” One of Kay’s favorite quotes from her mom is “Slow walkers see more.” She says, “My mom took the time to care and to see everything,” adding, “I needed that love, and I appreciate it all.”

Photo credit: courtesy
Photo credit: courtesy

Plus, disabled parents are already experts at adapting to a largely inaccessible world, which makes them well suited to the challenges of parenting. Emily and Ellen Ladau credit their shared condition for a sense of closeness and creativity. They say they have come up with enough life hacks — like keeping kitchen tongs in every room because they’re useful for picking up objects the two can’t otherwise reach — for their own reality show. But the most important thing to Emily has always been the emotional bond she has with her mother. “As hard as it was for me to grapple with my disability and as much of a source of shame as it could be at times, I always knew I had someone who got it intrinsically,” she says. “I always felt very lucky for that, because I knew there was proof of a successful disabled adult in front of me at all times.”

My mom and I learned to have fun in ways that were accessible to us, and she taught me that the way I experienced the world was beautiful and that I didn’t need to change who I was. Sometimes that meant setting up a small pool and sprinkler in our yard to play mermaids because we didn’t have transportation, or building a blanket fort so she could listen to me tell stories while I stimmed with my hands and feet, dancing to the beat of each tale. Though she wasn’t autistic, my mom knew what it was like to have the world view her in a certain way, and she wanted to raise me to advocate for myself the way she did for me.

After she died, when I was in middle school, I moved in with my dad, who had an anxiety disorder and a traumatic brain injury. Psychological issues such as anxiety and depression aren’t often seen as disabilities, but I learned a lot from him about my own mental health.

One afternoon, I told my dad I was too sad to go to school the next day. “I think I’m too sad to work on anything,” I said. “I just need a day to be sad.” At first he was hesitant, but he researched the importance of letting kids take mental health days, let me stay home that day and made me an appointment with a therapist. He also was honest with me about his own mental health when he was struggling with a panic attack or grief. His honesty taught me to take care of my mental health. When one of us was having a difficult mental health day, we’d take a long, quiet walk together or sit in the living room watching television and eating frozen pizza.

That sense of mutual support has enriched the Ladaus’ lives too, in a world that often feels far less accepting. “I always had someone who understood me in a way no one else understood me,” says Emily. “We are currently each other’s best friend and always will be,” Ellen adds. “The joy comes from our bond.”

Advocacy groups and resources that can help lighten the load

  • Parental Rights Foundation: Educates the public on and advocates for the rights of families and parents.

  • Dreamscape Foundation: Aims to make schools, workplaces and the community more accessible and highlights resources that can help people live and work more independently.

  • Through the Looking Glass: Identifies research and resources for families in which a parent, a child or another family member lives with a disability.

This story originally appeared in the April 2021 issue of Good Housekeeping. Subscribe to Good Housekeeping here.

You Might Also Like