There are plenty of topics I don’t understand, or know enough about to be able to contribute to the conversation when said topics are presented. Unlike some folks who plow ahead with their ignorance, or attempt to convince themselves or others that they know more than they do, I try to listen and learn. I’m comfortable being unsure and can admit when I make mistakes, but that doesn’t mean I’m not uncomfortable in my attempts and desire to get certain subjects right.
That discomfort shouldn’t stop any of us from knowing and doing better; I’m learning how to approach disability and understand my implicit biases when it comes to ableism. I want to be able to have meaningful conversations with my kids about folks with disabilities and be able to answer their curious questions. Thankfully there are plenty of outspoken advocates and folks with disabilities who offer education and stories so that people like me don’t have any excuses for not learning and changing my perspective.
The first thing all of us need to do is get comfortable with and respect the language people ask us to use to describe themselves. There is stigma around the words disabled and disabilities. For too long we have othered folks who don’t fit into what people assume to be “regular” society; we do this to fat people, queer people, and BIPOC communities. I identify as queer and have had many people tell me over the years that I shouldn’t use that word to describe myself; it seemed too negative and derogatory to them, yet it’s my truth, home, and the word I use to find others who have experiences similar to my own. Instead of letting go of their internalized phobias and biases, they expected me to conform to make them comfortable. That’s not how allyship or respect works when attempting to protect and uplift a marginalized group. This message is repeated over and over when it comes to the word “disabled.”
The Neurodivergent Teacher writes, “Using euphemisms to refer to disability diminishes the ways disabled folx are discriminated against and the accessibility they have to continuously fight for, your discomfort with the terms ‘disability’ or ‘disabled’ are irrelevant if you are nondisabled.”
This is one of many lessons Emily Ladau, writer, disability activist, and communications consultant, writes about in her new book “Demystifying Disability”. “Discomfort with disability can often lead to the use of terms like “special needs” or “differently abled,” but when you think about it, everyone has needs and differing abilities, so these terms are actually pretty meaningless,” Ladau tells Scary Mommy. In her book, Ladau points out that 15 percent of the global population is disabled, making disabled people the largest minority group in the world. She wrote a guide on how to be more thoughtful and informed while making the world a more accessible and inclusive place for disabled people.
When talking about allyship Ladau says, “Allyship is based in meaningful action. Non-disabled parents can absolutely be allies to the disability community by committing to learning about disability from the work of disabled people and ensuring their kids do the same.”
It’s important to know and remember that it’s okay for kids to ask questions. Kids are observational and curious, and the adults in their lives have a responsibility to react in a way that’s positive and doesn’t silence, shame, and add negativity to the disabled community. If you are out and your child asks a question about or points out a disabled person, Ladau says it’s key to reword a question that is rude. If your child points and asks, “What’s wrong with her?” adults can address the fact that the child is curious but needs to be polite. She suggests saying, “It appears that person has a disability. That doesn’t mean anything is wrong with them. It’s just part of who they are.” And if your child asks a question you don’t have the answer to, then be honest about that and make a plan to learn together.
Heather Jones, a writer and mom of two with degenerative disc disease, tells Scary Mommy to always confirm the observation and then take cues from the disabled person if they are overhearing the conversations. “Often disabled people are happy to discuss their disability with curious children – but don’t assume, or put a disabled person on the spot. It is easy for a parent’s awkwardness to turn disabled people invisible.” She says adults will do this by avoiding eye contact or interacting with a disabled person because they don’t want to mess up the interaction. Not only is that dehumanizing, but it’s counterproductive.
Don’t wait for your child—or yourself—to see a disabled person to think about the spaces you occupy and how they may impact others. Ask yourself and your child if the space is accessible for everyone. Who is in the room? Why or why not? Jones reminds us that everyone can use a ramp, but not everyone can use the stairs. If there is only room for one, why isn’t the ramp installed? Why is the default a set of stairs that will only benefit some people? Instead of excluding people we need to be doing everything we can to be sure everyone has access to the same opportunities.
Jones recommends that parents read “You Can’t Invite A Fish To A Dance Party” by Jessica Williams with their kids. It’s a children’s book about well-meaning pets who end up excluding one of their friends from a party because they determined what was best for him.
Disabled people don’t need us to speak for them or “correct” them or their feelings. They shouldn’t have to prove their worth or the impact of “well-meaning” people and intentions. We need to listen and learn and then do better. When we become uncomfortable our ego can get the best of us too, but to be the allies we want to be or say we are, then we need to sit in that pocket of discomfort so we can make the world more comfortable for others.
Ladau tells Scary Mommy,“We live in a society that’s made it quite clear that the differences between us should make us uncomfortable, so it’s an active process to push back against that mindset.”