Culture & Conversation Family

What It’s Like to Be a Disabled Parent in an Inaccessible World

Robyn Powell

Parenting is hard work. But for parents with disabilities, the challenges can feel insurmountable—because they are raising children in a society not built for them.

Heather Watkins’ daughter is now 25. But the disability rights advocate still remembers the problems she faced picking her up from preschool two decades ago.

“The entrance had a few stairs,” Watkins, who has a congenital form of muscular dystrophy that affects her mobility, recalled via email. “When enrolling her, they initially seemed manageable, but after a long day of work … I hadn’t quite factored how much of a chore they’d become.”

“So, I started calling ahead to sign her out and have someone bring her out to [the] car,” Watkins said. “Well, the looks and side-eyes I caught from non-disabled parents judging me a ‘lazy’ and ‘entitled’ were unbelievable.”

Watkins continued to experience accessibility barriers as her daughter got older and played sports and danced in recitals. “Some of the venues weren’t always accessible, and this was so anxiety-producing since there were times I had to miss out or [the] view was obstructed in some way,” she said, noting that access to bathrooms in such venues also caused her anxiety about drinking too much liquid.

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Parenting is hard work. But for parents with disabilities, the challenges can feel insurmountable—not because of the parent’s disability itself, but because they are raising children in a society not built for them.

Watkins knew she “wasn’t going to be the parent doing too much running and jumping, all the rough and tumble aspects, because I couldn’t.” She said, “I had to really create this bond and emotional connection through lots of age-appropriate communication and awareness.”

Throughout the last century, the eugenics movement led to the involuntary sterilization of countless disabled women and others deemed “unfit to procreate.” Such a mentality still endures today, in the form of discriminatory policies that discourage or deny the right of parenthood to disabled people. Still, disabled people are increasingly choosing to become parents. Although prevalence estimates vary, recent research indicates there are between 2.9 million and 4.1 million disabled parents in the United States.

The Americans with Disabilities Act (ADA) passed nearly 30 years ago, to guarantee people with disabilities access to employment, government agencies, and places of public accommodations (such as restaurants, hotels, schools, and parks). Nonetheless, ADA violations are still common. Congress has made repeated attempts to weaken the ADA.

And, as disabled parents told Rewire.News, discrimination and inaccessibility can go beyond explicit ADA violations.

When Nicole, who asked that Rewire.News not use her last name, planned a family trip to Disney World last fall, she and her husband were “shocked” to learn about Disney’s policy that she interpreted as a ban on children from riding on the laps of people using mobility scooters or wheelchairs: “Wheeled mobility devices … should be single rider.” While her husband attended a work conference, Nicole, who has cerebral palsy and uses a wheelchair or a scooter for mobility, intended to bring her then-2-year-old daughter to the parks.

“Since the day she left the hospital, my daughter has ridden on my lap. … This is her normal, what she knows, what is safe for both of us. This is how I planned to get around the Disney Parks for the two days her dad would not be with us,” Nicole said via email. “I’m highly safety-minded when I’m with my daughter.”

Nicole went anyway, not wanting her daughter to miss out. “In this situation, I had no other choice but for my daughter to ride on my lap,” Nicole said. “She’s too young to walk safely beside me in crowds, and I cannot push a stroller from a scooter. I decided to put on my advocacy hat and conquer Disney as both an exhausted parent and as someone who may have to assert her rights.”

Notably, Nicole would probably have been prohibited from using a stroller that attaches to her wheelchair, like many parents who are wheelchair users utilize, as Disney’s policy also bans objects “pushed, pulled, or towed” by a scooter or wheelchair.

Nicole didn’t experience many problems relating to carrying her daughter on her lap. “Very few cast members approached us about her riding on my scooter, and those that did seemed to understand. Those that didn’t, well, we just kept moving … I also made an effort to avoid prolonged interactions with cast members because of this policy,” she said.

Nonetheless, Nicole is concerned about how Disney’s policies affected her family’s vacation. “Each morning I did stress to her that it was very important to ride safely with momma and to practice ‘calm behavior.’ … She should have had the freedom to be a wild kid at Disney. But this is my daughter’s normal, and she rose to the challenge, too. The anticipation and the experience did create a lot of undue stress.”

“Because of the mobility device policy and other policy changes, I would be very unlikely to return in the future. For us, ‘the Happiest Place on Earth’ no longer lives up to that moniker,” Nicole continued.

Disney did not respond to emailed questions about the policy.

Holly Bonner, the mother of a 4- and 6-year-old, says her biggest challenge is the school system. Bonner, a social worker, and blogger at Blind Motherhood, lost her eyesight seven years ago after battling breast cancer.

“Communicating with teachers and administrators about my children is frustrating,” Bonner said. She relies on her computer and other technology to read documents. As such, she needs everything available digitally. “Large class sizes make scanning or emailing parents individually less than desirable for educators, but without it, I do not know what is going on inside the classroom,” Bonner continued.

To ensure that she can fully participate in her children’s educational experiences, Bonner has had to advocate for herself and her children. “I lay everything out in black and white for the schools, but I make it absolutely clear if I don’t get what I need under the [ADA], I will absolutely take it to a higher authority. That has given me the label of a ‘problem’ parent. I am not looking to be a ‘problem,’ but I am looking to be included in my children’s school experience.”

Ableism also rears its head in more subtle ways.

Dealing with other parents has been “equally frustrating” Bonner said. “Most don’t know how to address my presence in the schoolyard with their own kids, so they would rather ignore me altogether. Sadly, this often negatively impact[s] my children, who are left to answer questions about my disability to their peers.”

“Abled-bodied people are always watching. I mean that for real—it’s not perceived,” Nicole said. “When we are out in the world, I feel like I’m on display. Sometimes people watch in awe, because they have no idea how I could possibly parent from a wheelchair. Sometimes they are complimentary. Sometimes they swoop in and try to help when help is not needed or wanted, and that is jarring and makes me feel less safe.”

“I am constantly trying to normalize our experience to abled people,” she said. “They don’t understand that this is our everyday normal. I wish people could look at me and assume competence.”

Unfortunately, the scrutiny disabled parents experience—especially parents of color, poor parents, and LGBTQ parents—can have detrimental consequences for families. According to the National Council on Disability (NCD), “Parents with disabilities and their children are overly, and often inappropriately, referred to child welfare services and, once involved, are permanently separated at disproportionately high rates.” NCD notes that referrals often come from strangers, neighbors, family members, and social service providers, and are often the result of speculation rather than actual harm to children.

Parenting is challenging with or without a disability. However, parenting in an inaccessible world can make it even harder. “Parenting is a journey, and disability adds another dimension. There is no instruction manual, and definitely no ‘one-size-fits-all’ approach,” Watkins said.

“You have to find a customized approach that works for your and your family, ensures your safety, productivity and peace of mind, and quality of life,” she said. “It may take some time and much effort, and that’s OK.”

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