Update: Just in the last few months I have learned much more about talking to children about disability. An update to this blog will be coming soon. In the meantime, you can learn more perspective by watching this @biglittlefeelings Instagram highlight on talking to children about disability.
You’re at a park with your kids; your 5-year-old tugs your arm and gestures at another parent. She asks why this other parent looks different from you. You are aware of the other parent’s physical (and visible) difference, and you are also mindful that your child’s question is in earshot of this “different-looking” individual.
How would you respond? Would you respond?
A similar scenario happened to my husband a few weeks ago. However, it is not the first time we’ve been the focus of a child’s curiosity, and it won’t be the last.
My husband and I are visibly disabled. I have Cerebral Palsy, which impacts my speech, fine motor abilities, and gait. My husband has X-Linked Hypophosphatemia (XLH), a genetic form of rickets where his bones are unable to retain phosphate resulting in a shorter stature, a waddling walk, and dental issues.
We’re used to seeing kids point or stare at us when we are in public. We understand that curiosity is natural (we don’t take it personally) — it’s important to a child’s development, and we believe it should be supported and encouraged.
As both a parent and a visibly disabled person, I would like to share my personal experience and thoughts on how parents/guardians can support a child’s curiosity about another individual’s difference/disability and turn it into a teachable moment. As you will soon read, I do not have the answers but hope that this blog post can ignite meaningful discussions both in the comments section below and within your family. I hope it can be a learning experience for all (myself included).
What’s Up With Your Mom?
Just as it is rare to see disability representation in the media, so too is it to see a mother with Cerebral Palsy volunteering at a school’s fundraiser or chair the PTA (a goal of mine?). The image of the parent (“normal”, “able-bodied” man/woman) has been pretty much the same since, well, forever. It is more recently that we are seeing a shift in what parenting should look like and be accepted as (example: same-sex parents, trans parents, inter-racial parents, etc.). However, it still appears to be less common to see parents with visible disabilities.
So, my husband and I are preparing…
We know that as our daughter, M, approaches school-age and meets new friends (outside of our social circle), she will be getting questions about why her parents are different. (M has the same genetic condition [XLH] as my husband; however, due to advancements in medicine, her disability will be mostly invisible. So her peers may not realize that she also has a disability.) We not only have to prepare and educate ourselves on how best to respond but also educate M on how she can respond. The “What’s wrong with your mom?” question is coming, and I want to be equipped with answers that encourage inclusion and understanding among her generation.
Turn An Awkward Moment Into A Teachable One
Parenting is hard work. Teachable moments may be lost sometimes. Often, a million thoughts are flying through a parent’s head at any given moment, and a child’s curiosity can catch us off-guard. If you’re not sure how you’d respond when your child points to a disabled person* and blurts out, “why does she talk funny?”, you’re not alone.
Let me share two instances, each from a different perspective.
Scenario 1: Ignoring Your Child’s Comments or Questions
Last year, when M was two, we were playing Ring Around the Rosie in my in-law’s apartment. While we were gathering in a circle to play, M says, “Grandma can’t play!” (I assume that M is referring to the fact that her Grandma is in a wheelchair, which M thinks prevents Grandma from playing). My husband didn’t hear M, and I didn’t respond. I was caught off-guard and pretended I didn’t hear. Four of the five people in that apartment have a disability, and I still didn’t take pause and turn the moment into a teachable one.
It’s awkward. It’s embarrassing. What do you say?
So, yeah… I’ve been there, too.
As an empath, my heart immediately dropped when M (unknowingly) used language that excluded my mother-in-law from play. I also felt disappointed in myself as a disabled person for not turning that moment into a teachable one. If given a second chance, I would have stopped the game and asked M why she thinks Grandma can’t play. If M responds with reference to the wheelchair, I would have said Grandma can still be included even with her wheelchair and would have demonstrated to M a way to make that happen. Keep in mind, M is only two years old – responses should differ according to age and level of understanding. Regardless, a discussion is required, in my opinion.
Scenario 2: The Stares You Don’t See
A few weeks ago, I was walking down the street with M. A mother and two daughters around 8-9 years old passed us on the sidewalk. The mother was walking the family dog and staring at her phone. The two girls followed behind and stared at me. So, I smiled and waved at them. They did not return the wave but continued to look back and stare at me. The mother was oblivious to their stares. This scenario happens often to my husband and me.
I know it’s natural for children to stare when they’re curious, but it’s also very awkward for the person who is being stared at. My advice? Be present with your children whenever possible. When you notice them staring or pointing, don’t shuffle them away out of shame. Think about what that is teaching them: disability is a bad thing.
Instead, it is an excellent opportunity to discuss that “everyone is different”; celebrate that everyone has a different way of moving, speaking, learning, and experiencing the world. Provide a space for their questions and be honest. If you don’t know the answer, admit it. Explore a solution together. Get educated and do your best to respond. But please don’t be oblivious and/or ignore your child’s queries!
Do The Research
I encourage you to do additional research on how to discuss disability with your children and prepare yourself for the inevitable questions so that you can calmly and matter-of-factly answer when they arise – even in the most awkward situations. This is a wonderful article that shares the perspectives of other disabled parents and parents with disabled children on how to discuss disability in your family. Here is another great article that breaks down how to talk to children about disability according to age.
If you’re not sure how to talk about it, you are welcome to ask me. In my personal experience, I would prefer a child to ask me questions than stare and/or point. Both my husband and I are comfortable discussing our disability and love to entertain a child’s curiosities. Any time that we can expose children to disability and take the time to discuss it, helps to normalize it within society — it becomes less strange and less scary.
I am sure I will share more on this subject as my learning and experiences grow as my daughter ages. I believe that the more we work together, communicate, and openly discuss differences with each other and our children, the more opportunity there is for understanding, acceptance and inclusion. Please reach out!
Note: Not all disabled people appreciate being asked about their disability (read different opinions here), so be mindful of the situation at hand, your approach to asking the questions, and respectful of someone’s right to privacy.
*I use identity-first language (“disabled person” instead of “person with a disability”) as I see my disability as something that is at the core of who I am — an important (and positive) part of my identity. Read more about identity-first vs person-first language.
8 thoughts on ““What’s Wrong With Her?”: Thoughts On Talking To Children About Disability”
I feel like I’m prepared to answer any of my kids questions but I actually really like the simplicity of your approach. Lots to learn about everything as you’ve stated, parenting is hard, but it makes it easier when we’re surrounded by advice like this. Just imagine what the next generation will be like! I’m going to be optimistic and say we’re getting better and better in dealing with peoples differences, visible and invisible.
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Thank you for your kind words and comment Joseph! You’re so right, I am hopeful that the next generation will be so much more open, kind and accepting of people’s differences, whatever they may be. I think you have a good handle on how to respond to the questions from your kids, but I am happy to read that you found some additional insight in this blog post. Thank you for reading!
Great post Taryn! My master’s thesis advisor was very much involved in disability issues research and was a strong proponent of people-first language hence why my thesis was titled: ‘Meanings Parents Ascribe to Caring for their Child with Nonverbal Learning Disability’ as opposed to ‘Caring for their NLD Child’. This was over 10 years ago & so I wonder if viewing identity-first language in a positive way came after the push for people-first language. In any case, it’s good to know that both are OK depending on the context.
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Thanks for reading, Alex, and for sharing your thoughts! Despite being disabled, I am still learning about the “disability activism” space and the language used. I think both people-first and identity-first languages are used interchangeably depending on the preference of the disabled person. I have read that in recent years, the activists have “reclaimed” the identity-first language, so to speak. It sounds like the premise of this is to show that there is nothing “wrong” or “bad” about being disabled and therefore, we should be allowed to say the word (even using the hashtag #saytheword). Like you mentioned, there has been a shift in recent years. Thanks for bringing this up. Also, your thesis sounds extremely interesting. I did a Master’s paper on disability 15 years ago and still, a lot of this terminology that I am reading now is new to me.
Imagine how a learning opportunity like this taken with your child could translate into a kind interaction when they encounter a disabled classmate, or in the playground when mom and dad aren’t around to chaperone. It’s a wonderful topic to shed light on!
This is a beautiful, hopeful perspective. What we teach and how we speak, kids do model that even when we’re not looking. Let’s model kindness and understanding.
Thanks for writing this! I think there is a lot more awareness now, a lot more mindfulness about this so I am hopeful for the future especially when we have writers like you willing to write openly and honestly about it.
I think most people feel awkward or try to avoid the conversations because it’s hard to tell who would be open to the discussion and who would resent being the “token” representative. I hear a lot of this when discussing race; there’s a lot about “I’m not here to educate you.” It seems safer to not bring it up. I also think that folks don’t see the myriads of ways you can bring up the discussions – from respectful to microaggressive. Asking “No, where are you REALLY from?” is quite different than “I’d love to hear more about your culture.”
PS. Here an interesting example of more inclusion: https://nerdist.com/article/dungeons-and-dragons-combat-wheelchair/
Thank you for taking the time to read and for your insightful comment, V. You raise some good points. While talking to Mikie about this I realized that I, too, would probably never ask someone about their disability/difference because, like you said, it’s hard to tell who would be open to the discussion. When I look back, I can only think of a handful of times where I’ve been asked by someone about my disability. I often wonder what is going through the minds of those who don’t ask. What are they assuming about me? Or do they even care? If not, why don’t they care enough to learn more? Or they’re afraid to ask! So by writing this blog I want those who know me to know that if they need a resource, I’m here. However, I can only share my personal experiences. I cannot and will not speak for anyone else.
As you say, it’s how you ask too that is most important. That is key! There is so much intersectionality between race and disability.
Thank you for sharing the article about inclusion in D&D. I’ve never played, but now I kind of want to try. I was pretty excited when Paw Patrol introduced a new pup that uses wheels on his hind legs to get around. Inclusion is popping up everywhere and it’s great to see.