Many parents don't talk to their kids about disability 'in fear of getting it wrong.' Here's how to start the conversation.
These conversations can also help demystify disability for naturally curious children.
In the United States it’s estimated that 4.3% of children, and up to one in four adults, has some form of disability. That means that most children will encounter someone with a disability when they are still very young.
Yet, many parents shy away from having discussions about disability. “I find my friends don’t talk to their [typically developing] children about disability at all in fear of getting it wrong,” says Daya Chaney Webb, a parent of a disabled child and advocate with Alliance Against Seclusion and Restraint. And Whitney Stohr, a parent of a disabled child and advocate with Little Lobbyists, says that even parents who talk about diversity with their children overlook disability “as part of that broader discussion.”
Why it's important to discuss disability with kids
Advocates recommend having these conversations early. “I grew up watching kids and adults alike recoil from my brother simply because he looked a little different, and spoke a little differently from them," says Melissa Hart, who grew up with a brother with Down syndrome, and is a former special education teacher and author of two books featuring disabled characters. "The younger kids are when we have conversations about people with physical and intellectual disabilities, and the more we create compassion and extend a hand in friendship, the better for us all."
These conversations can also help demystify disability for naturally curious children.
“Kids are fascinated by anything that looks different from what they're used to seeing," says Trish Allison, author of How to Respond to Disability Curiosity from Kids and the founder of DEI for Parents. "It could be someone in a wheelchair, someone stimming [engaging in self-stimulating behaviors, typically involving repetitive movements or sounds] or a blind person with a service dog. The type of disability doesn't matter to them. It's the fact that it's something out of the ordinary that makes them curious. It's a natural instinct — not a judgment."
This tracks with the experience of James Catchpole, author of What Happened to You?, a book based partially on his experience of living with one leg. “Children’s brains are primed to learn the rules for how the world works," he says. "In my case, little ones have only just worked out that legs normally come in pairs — so of course the sight of me blows their minds. What? say their brains. People come like that, too?!”
According to Allison, it’s important that parents answer kids’ questions. “It’s how they learn,” she says, adding that it’s much better for children to get answers from their parents rather than using their imagination to fill in the blanks.
Hart suggests explaining to your child “that people with disabilities are human beings with likes and dislikes and desires and hobbies and goals” just like everyone else. That’s something even very young children can understand.
How parents can start the conversation
Allison recommends opening a discussion about disability by asking kids what they’ve already learned. Otherwise, “they might tune out because you're telling them something they already know,” she says.
Instead of trying to engage kids in a serious, sit-down discussion Allison recommends having short, casual discussions whenever seems appropriate. Hart thinks that “the best time to talk to children about disability is when a real-life opportunity arises,” whether that is when your child sees a person with a disability at the park or on television.
“Parents should be candid in explaining to their kids that brains and bodies work in all different ways, and people — regardless of whether they look and act similarly to, or different from, our children — deserve respect, compassion and friendship,” Hart adds.
Allison says to keep conversations simple at first. She recommends telling children that “a disabled person has a body part … that works differently than ours. Other than that, they're just like you and me.” It’s also important that children understand “it’s crucial to treat all people with disabilities as people first,” she adds. Allison explains that many disabled people “do not think of the disability as their identity.” That means someone who is a teacher and uses a wheelchair might first think of themselves as a teacher rather than a wheelchair user.
According to Allison, parents must acknowledge that people with physical disabilities do look different. If you don’t acknowledge this, Allison says your children probably won’t trust anything else you say about the subject.
Conversations may become more complex as children get older and start asking more questions. When this happens, children might wonder about invisible disabilities that are not immediately apparent. Invisible disabilities include intellectual disabilities and some physical disabilities, such as someone with a prosthetic leg under their clothing. Allison recommends explaining that invisible disabilities are real disabilities “so people with invisible disabilities deserve the same kindness and respect as someone in a wheelchair.”
Reinforce the message
If parents want their children to accept and include people with disabilities they need to “be the example,” says Allison. Just talking isn't enough. “If you say something is important, but your child doesn't see you behaving in a way that matches your words, they know it’s not actually that important to you, so why should it be important to them?” says Allison.
There are many ways parents can do this. First, Allison says that parents need to be aware of their own biases. “If you behave in ways that demonstrate you're fearful of disabled people, even though you say you’re all for disability equality, your child will notice and emulate your behavior,” she says. Second, Allison says that parents need to be proactive and “take a stand when they see someone being treated unfairly.” Third, Allison says that parents need to “respect accommodations.” There are many accommodations that give people with disabilities equal access, including accessible parking spots and larger bathrooms. “You can show respect for those accommodations by praising them instead of acting annoyed,” recommends Allison.
Hart tries to put this into practice. “Including people with physical and intellectual disabilities in our circle of friends brings a richness and a diversity that can be incredibly rewarding to all,” she says. Hart recommends that parents figure out which children in their neighborhood aren’t getting invited to playdates and parties and start extending invitations.
Parents should also consider having book and toy collections that represent disability.
“If disability is a part of children’s books and toys from when they’re first read to or played with, then [there] won’t even need to be a deliberate conversation” about disability, says Catchpole.
Kristen Souza, a licensed mental health counselor, says that “toys and books are a great way to teach kindness and to also help your child become a critical thinker.” Moreover, introducing books and toys that portray children with disabilities in a positive light is a great “way to control the narrative as a parent and to get ahead of the questions [children] will inevitably ask you,” she says.
Hart recommends using picture books and television programs that represent “people with varying disabilities authentically and respectfully.” Mainstream television shows like Sesame Street, Firebuds, Arthur and Daniel Tiger's Neighborhood feature characters with disabilities so they aren’t hard to find.
Instead of books that focus only on someone’s disability Allison says to look for books “with people with disabilities fully integrated into the storyline.” Hart also recommends books that “integrate characters with disabilities naturally into stories for kids” to show that disability is not something to be ashamed of or hidden.
The Diverse Book Finder website is a good place to start. Librarians and booksellers often have good recommendations as well. “Reading together is a wonderful way to inspire conversations about people who may look or act differently from your child,” explains Hart.
Diversifying your child’s toy collection is also a good step towards opening a discussion about disability. Whether your child prefers a remote-controlled person in a wheelchair or a doll that uses a hearing aid, toys are a good way to introduce disability to children early. Hart took this approach with her daughter. “When she came across kids at school who used the same devices, she was already familiar with physical disabilities and thought nothing of reaching out a hand in friendship,” she says.
Catchpole emphasizes the importance of a diverse toy and book collection. “As a disabled person, you can feel the difference between ‘What on earth is that?’ and ‘He’s like the kid in my book!'” he says.
Learn the rules of etiquette
“There are specific etiquette guidelines to consider when teaching children how to engage with people with disabilities,” says Allison.
According to Allison it’s important that children know that “disabled people do not want to be seen as objects of pity.” Parents should also use “positive terms” when talking about disability, she says. Instead of saying someone in a wheelchair can’t walk, explain that wheelchairs help people move around and give them freedom.
Parents should also teach children to treat medical devices with respect, says Allison. Do not pet a service dog without asking and do not move someone’s wheelchair without their consent. Children may be eager to help when they see someone with a disability, but Allison emphasizes that it’s important to “ask the disabled person if they want help before you help."
But how should parents respond if their child stares at someone with a disability, or loudly asks what’s “wrong” with them? According to Brianna Leonhard, a special education teacher certified in profound intellectual disabilities and autism, “children are naturally curious but not naturally judgmental. They see a difference, but they do not inherently judge it as a flaw.” She says that “scolding children for being curious or staring paves the way for children to view people with disabilities differently or to avoid them completely."
Hart, who grew deflecting invasive questions about her brother, suggests that parents “simply and kindly apologize to that person” before taking your child to a quiet place to discuss why what they said might be hurtful and discussing how to approach someone with a disability, starting with a “genuine hello.” She also recommends finding a positive example, in that moment, of a person with the same disability. Parents can then open a discussion of what the person with a disability might like to do and how the disability might affect the person’s life.
Children should also not be prying about someone's health. Catchpole emphasizes that it’s important to respect the privacy of disabled people. “When the prevailing consensus is that a curious child should ‘just ask!’ then the burden is on the disabled [person] to just answer," he explains. "Think for a moment what that means. A visibly disabled [person] will encounter a curious child many times every day."
Moreover, stopping a disabled person to ask questions singles out their differences in public and “it’s the most personal question a person can be asked,” says Catchpole. He adds that while parents teach their children not to ask strangers personal questions, they often exempt disabled people from this basic rule but they shouldn’t.
According to Catchpole, most children who are curious about what happened to a disabled person will accept a simple explanation along the lines of “bodies work in all sorts of different ways, and that’s OK” with an explanation that it’s OK not to know what happened to the person. Parents can explain in a general way that some people are born with one leg, some lose a leg because of an accident or illness and some use a wheelchair because their legs work in different ways.
In the end, “the most important lesson when explaining disability to kids is that all people, no exceptions, deserve to be treated with kindness and respect. Depending on their age, hopefully they'll be able to take that concept and apply it to other groups of marginalized people,” says Allison.
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