From the sex talk and race talk to discussing gun violence and more, parents find themselves engaging in difficult conversations with their children routinely. But one topic they may not be openly discussing is disabilities.
When it does come up, it’s not uncommon for parents to trip over words or dodge any questions about disabilities. In some cases, upon encountering someone with a noticeable disability suggests, the conversation may start and end with a statement like, “Don’t stare — it’s rude,” notes Tameka Cichen-Spruce, co-director of the Michigan Disabilities Rights Coalition and a screenwriter, who is paralyzed from the chest down.
Some parents fear being unintentionally offensive because it’s unclear to them what is acceptable language. It’s hard to talk about what you don’t understand, and despite 15% of the world population having a disability, how to discuss disabilities still remains a mystery to most people. Here, expert-driven dos and don’ts tips for parents who want to talk about the topic with their kids.
What is a disability?
What is and what is not a disability isn’t always clear, given that there are both medical and legal definitions. Neither definition aligns with the general publics’ understanding. In many cases the societal understanding of a disability is generally limited to physical limitations. For example, some may only consider the use of visible assistance such as a wheelchair or prosthetic leg necessary to acknowledge someone as disabled.
According to the Centers for Disease Control and Prevention (CDC), a disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities. That means the term disabled covers a very large community and includes people with varying diagnoses from cerebral palsy and meningitis to autism and spina bifida.
Alternatively, the accepted definition of disability according to Social Security for the purpose of receiving benefits relies heavily on a person’s inability to work due to their medical condition. Meanwhile, the definition by the American Disabilities Act includes those who are no longer disabled but once were, especially as it relates to potential discrimination.
Why is it so hard for some parents to discuss disabilities?
Talking openly and honestly about children with disabilities requires parents to acknowledge and address their own preconceived notions about disabilities and what they don’t understand.
“it’s obviously very personal because it is going to be consistent with your values as a parent and specific to your child’s condition and developmental stage,” said Dr. Kelly Fardin, a pediatrician and author of “Advanced Parenting: Advice for Helping Kids Through Diagnosis, Differences and Mental Health Challenges.” The parents and children who handle it well are those who don’t view disabled people as problems that need to be fixed, she suggested. Instead, they seem to fare better when they see the environment as the problem that needs to be fixed by removing barriers and creating more accommodations as needed.
Even parents raising children with various physical or learning disabilities struggle to manage and cope with their feelings. A 2018 study found that parents raising students with learning disabilities displayed feelings of rejection, overprotection and hopelessness in relation to their child’s diagnosis.
Experts encourage people to take an individual’s lead when talking to them or mentioning them, and teach your kids to do the same.
— Dr. Kelly Fardin, a pediatrician and author of “Advanced Parenting”
Is it OK to say someone is “disabled”?
Further complicating the discussion surrounding disabilities is acknowledging that some people who fall within the definition of “disabled” don’t identify as such. Or they may not identify with any variation of disabled at all. However, more and more disabled community members and activists are dissuading the use of special needs, handicapped or differently-abled in favor of the term disabled. For example, some reject the term “special needs,” because everybody has needs that allow them to live comfortably. Singling out the needs of a disabled person as “special” can unintentionally add to the negative stigma adopted by society.
Regardless of the diagnosis, adults can explain to kids that “disabled” can be part of someone’s identity just as gender and race are part of someone’s identity, as suggested by a 2019 study.
“This disability is a part of who I am,” says Chichen-Spruce. “I’m proud about that because it’s shaped the person [I’ve become].” Furthermore, intersectionality of identities dictate how they perceive the world and how the world perceives disabled people.
Experts encourage people to take an individual’s lead when talking to them or mentioning them, and teach your kids to do the same, says Fardin.
“I don’t think of myself as disabled,” notes Fradin who is a childhood cancer survivor. “So I mostly have tried to listen to the voices of those who have long-term disabilities. What I learned from going through that period of disability myself was that I want the children’s voices to be held up and valued and listened to.”
Other labels some disabled people may use to describe themselves include:
Why is it important to teach children about disabilities?
Whether or not they are aware of it, children are likely to interact with disabled people daily. Not discussing disabilities opens children and adults up to bullying, discrimination and exclusion.
xperts agree there is still a lot of work to be done even as more and more schools implement diversity, equity and inclusion efforts in the classroom that recognize learned ableism.
Maria Davis-Pierre, a Florida-based licensed therapist and CEO and founder of Autism in Black®, an organization aimed with destigmatizing autism spectrum disorder and providing parents of autistic children with educational and advocacy resources, says she is preparing her children for the fact that various topics are not going to be discussed in school as a result of local politics.
As a Black mother to Black children, Davis-Pierre prepares her children by discussing their personal strengths, pointing out instances of racism and ableism, yet remains honest about the uncertainty of their well-being in the political climate. “I don’t know what will happen in this environment or how the school’s will handle it,” she notes. “But I want my children to know no matter what’s to come, we’re gonna face it together.”
A recent study from the Pew Research Center found that there is a clear difference in schools from various socioeconomic and racial groups referencing DEI initiatives in school mission statements. In several situations, rural schools or those in majority Republican areas were less likely to reference terms such as “support,” “equity” and “close the achievement gap” in the mission statement than schools in largely suburban or primarily Democratic areas.
All of those terms are relevant in terms of disability acceptance and awareness. Teaching all children about disabilities makes it easier for them to be global citizens who move with empathy thus creating a safer environment and inclusive community for all children.
What do you say when your child points out a disability?
In most cases, mention of disabilities will likely happen upon noticing them in day-to-day life, says Davis-Pierre. For example, a child might comment that a classmate has an instructional aide through the school day. Or they might notice another student might have a hearing aid or wear a weighted vest. In those situations, children may point and say, “What’s wrong with them?”
If that happens, you can explain that nothing is wrong with the person, and it may not be easy for them to hear, walk, etc. You can mention the equipment in question is a resource that helps their classmate do something that might be particularly challenging for them, like walking.
When kids notice a peer is disabled, Davis suggests a “just the facts” approach that acknowledges any differences. For example, you can say that the amputee has one leg to walk and you have two, she suggested. With this method you are less likely to use presumptuous language that could mistakenly label the person or make assumptions about how they perceive themselves.
What is the correct way to talk about disabilities?
A lot of language commonly used in dialogue, whether or not in reference to a specific diagnosis, can be dismissive to the disability community and even lend to stigmas. For example, phrases such as, “I’m so OCD…,” “the blind leading the blind,” “that’s crazy” or even “they suffer with…” are all phrases that stem from an ableist perspective and imply that a nondisabled life is the “right way.”
Commonly used phrases to reconsider when speaking about disabilities
| Say this… | …not that |
| “They have a need to live comfortably like everyone else.” | “They have special needs.” |
| “This person is different.” | “That person looks sick.” |
| “That’s ridiculous.” | “That’s crazy.” |
| “They think differently.” | “That’s stupid.” |
| “They require different levels of care.” | “They are high/low functioning.” |
In the process of eliminating shameful phrases from their vocabulary, parents and children can join the pledge created by the Special Olympics and Best Buddies to stop using the word “retarded.” They describe it as an exclusionary and demeaning word that goes against principles of acceptance and inclusion.
It’s also important to not go overboard in casting disabilities in an artificially positive light, says Davis-Pierre. For instance, you would do well not to point out a disabled person’s strength or their pride in “being a survivor.” Highlighting only the positives and painting disabled children as “strong ones” can unintentionally invalidate their personal struggles.
Using that type of language can also further alienate the disabled community. Being disabled doesn’t mean they are stronger than others or inspirational.
“It’s important for parents to remind disabled children that it’s up to them to define who they are — not people who make offensive comments.”
— Tameka Cichen-Spruce, co-director of the Michigan Disabilities Rights Coalition
What if your child has a disability?
“It’s important for parents to remind disabled children that it’s up to them to define who they are — not people who make offensive comments,” notes Cichen-Spruce.
Being the receiver of difficult questions or even mean-spirited comments from children and adults is inevitable for disabled children, she suggests,. She remembers middle school days in which her disability meant others were unwilling to be her boyfriend or some would assume she also had a cognitive disability because she uses a wheelchair.
Further complicating the realities of being disabled was the intersectionality of race. Cichen-Spruce was a Black student in a predominately white school. While those situations were disappointing and sometimes heavy, Cichen-Spruce says they didn’t phase her too often because she was confident in who she was.
According to the non-profit, Understood, it’s equally important to address your child’s strengths and weaknesses. Kids also need the reminder that it’s OK to be scared. These conversations are important for kids to build confidence and feel capable of advocating for themselves as necessary.
It can be especially helpful when addressing something a teacher may misunderstand or when responding to bullies, said Cichen-Spruce. However, it’s not a kid’s burden to explain their disability to others, she says.
“Let them know it’s OK for them to assess and respond to the situation as they see fit,” she recommends. “[That could mean] ignoring comments or telling adults what happened.” Kids will do well to advocate for themselves when it comes to accommodations, but they shouldn’t feel forced to do it if someone is making nasty comments, she adds.
Ideally, when a child is targeted with mean comments, teachers or parents should intervene and educate, adds Davis-Pierre. “I don’t think the onus should be on my child to educate the masses on differences, because they’re gonna see differences every day,” she notes.
The bottom line
Talking to kids about disabilities is about teaching kindness, empathy and acceptance. Children are naturally curious and the more parents address their curiosity and openly discuss questions about differences the better. At the same time, avoiding conversation around disabilities can fuel shame, says Cichen-Spruce. “Not acknowledging these differences is like saying there’s something’s wrong with them,” she notes. “Explain that they have a disability, or they have to do things differently. Everybody is human. Everybody is different, and that’s OK.”
