When her daughter, Joanna, was born five years ago, Lindsey Melden was prepared for the fact that she would be born with spina bifida, a spinal condition that can affect those living with it in very different ways. Melden says she was already aware that her daughter would have an extreme case with physiological effects.
“In January 2016, I was thrust into this new world of disability,” says Melden. “Being non-disabled, it was my privilege to never have to think about things like accessibility and the language we use surrounding it.”
As she delved whole-heartedly into educating herself about spina bifida and the differently abled community, she quickly realized how much the words we use matter. Melden feels that too often people don’t expose their children to the reality that there are kids who are wheelchair users, or who may have different abilities than themselves.
“For example, people will use words like ‘wheelchair bound.’ That’s one negative phrase I feel is changing, but you’ll still even see ‘confined to a wheelchair,’” says Melden. “Obviously, my daughter will have her own journey in terms of what language she prefers as she grows. But, how people refer to wheelchairs is a big one.”
For parents who don’t have a child with a disability, it can be intimidating to broach the subject with their children, so they sometimes avoid what could be potentially uncomfortable. Unfortunately, it’s this discomfort that can lead to awkward situations when their child does encounter a differently abled child for the first time.
This is why representation is so important in the media kids consume, with books being an ideal way to educate them about kids who are different from themselves, adds Melden.
“I think if you’re talking to them and sharing language with them before they meet a child with a disability, it’s gonna be much easier for everyone to feel comfortable.”
Susan Hagemeyer, an active board member of the Avalon Foundation who has a rare form of hypophosphatasia (HPP), feels that the most important thing when it comes to using correct terminology is to simply ask the person with a disability what they would prefer. It’s especially important, she says, to be aware of how words can affect kids with disabilities.
“I think that the term ‘disabled’ diminishes all the things that somebody can do, even if you do have a disability,” says Hagemeyer. “That was one that always stood out to me a lot because I know I’m perfectly capable of doing many things. When you’re younger, you put so much meaning into everything you hear; it can be easy to let it define you.”
As an advocate for children in the rare disease community and someone who has lived with HPP her whole life, Hagemeyer thinks most people have good intentions. She says the most important thing is “not to avoid the disability altogether, but don’t make it the main topic of conversation, either. Get to know them as a person.”
Sidebar 1: Safe Language Choices
Don’t Say: Wheelchair bound or Wheelchair confined
Do Say: Wheelchair user
Don’t Say: Disabled (though some people do embrace this term)
Do Say: Differently Abled or Person with a Disability
Don’t Say: Hearing Impaired
Do Say: Hard of Hearing
Don’t Ask: What happened to you? Or What’s wrong with you?
Instead: Get to know the person first, then ask questions you are curious about regarding their wheelchair or other mobility device later.
The trick is to avoid negative words. When in doubt? Just ask!
Sidebar 2: Books to teach your kids about disabilities