‘What’s Wrong With Him?’ — How I Reacted and Responded To Questions About My Son’s Disability

May 19, 2022

When we were between appointments at the local children’s hospital, my son and I would find ways to kill time.

Raising someone with boundless energy meant finding opportunities for him to move about in between the demands placed on him.

So in the accessway, between the parkade and the main entrance, I would let him rip around in his wheelchair to get some of that energy out.

And if it was a nice day, we would head to the playground behind the hospital and have some fun.

Rae Martens lost her son too soon, and it set her down a path of patient-oriented research.

Typical Conversations

Whatever the activity, there was one variable that seemed inevitable: questions from a curious child.

They’d ask something like, “What’s wrong with him?”

In those moments I would see the fear in the eyes of their parent.

I would think about how they likely hadn’t approached this topic yet at home.

And how learning and teaching in the moment can stoke fear in most parents.

"My message to kids was a work in progress and one that had to pivot frequently."

I can’t account for the feelings of every parent of a disabled child, but I was always OK with these moments.

This subject isn’t always on a parent’s radar and some don’t even realize a question like this can come from kids.

My message to kids was a work in progress and one that had to pivot frequently.

When a light turned on in their mind as they discovered a new concept, it was clear to me that it was worth the effort of taking a moment to talk to them.

Let’s be honest, I was always learning as a mom too. Approaching the subject with an enthusiasm to teach made it more possible to plant seeds of change. Not just for kids, but their parents too.

Abruptly Entering the Chat

There is a learning curve that every parent goes through when it comes to learning about and connecting with their child.

Disability does add a layer of complexity which means it can sometimes take longer to process the proverbial dance of child development.

These efforts can sometimes come with added struggle. Because there is a cloud of misinformation from others to contend with, and there is often just a lack of exposure to disability.

So, yeah, I can see why some parents get nervous when their able-bodied child speaks up in public.

While parents often want to come at these conversations with the best of intentions, the timing and approach are often put in the hands of filter-free littles.

This can be abrupt, but I do believe the insights of parents are a powerful influence. Parents are, after all, role models.

Intention to Learn

The good news is that learning from disabled advocates has never been easier.

While sharing personal stories online isn’t in everyone’s comfort zone, many people in spaces like Facebook or TikTok are opening up about their experiences. It’s a way to quietly listen and learn with an open mind and heart.

Even my own foundation wouldn’t be possible without learning from the experiences of others.

This is why I would introduce my son to outspoken kids, because getting to know a person is the best foundation. Friendship is a great bond, and a perfect place to start asking — and discussing — big, personal questions.

But they are big conversations. So I think it’s important to keep language age-appropriate and accessible. When younger kids would ask about my son, I’d explain that his legs didn’t listen to him very well. (I learned that statement from a wheelchair user.)

It was also important for me to contextualize what that means.

"Much like prescription glasses help someone to see, a wheelchair helps someone get around."

His chair wasn’t a limitation — he also loved how it made him go very fast.

From there, we’d discuss their love of running and going very fast. Often they’d proclaim to be the fastest person ever! So I’d suggest that the two of them could have a race sometime.

It was always adorable, because you could see their little minds strategizing their future race.

My son’s wheelchair was an extension of his identity and a tool to help him do awesome things. To frame the purpose of a wheelchair as such helps another kid understand that it’s just another tool to help someone.

Much like prescription glasses help someone to see, a wheelchair helps someone get around.

Both are assistive devices.

Parents who spend a lot of their time taking their child to specialists and doctors learn to talk like a doctor as a matter of survival.

Keeping The Conversation Rolling

What can help bolster these conversations in the future is investing in kids’ books that talk about and normalize disability.

There are plenty available for purchase that can help reinforce the idea that disability is something people will encounter throughout their lives.

Rather than making it an exceptional or uncomfortable topic that should be avoided, this is an opportunity to share how uniqueness and neurodiversity bring depth and richness to the world around us.

Kids’ books also often promote an understanding that disability is intersectional, that this is a subject that affects everyone at some point in their lives.

Disability can also be a great launching pad to talk about the subject of human rights, which I don't think is something readily approached across parenting circles. Canada is a signatory country of both the Convention on the Rights of the Child (CRC) as well as the Convention on the Rights of Persons with Disabilities. Both conventions affect children directly and offer them the right to have a voice. 

Approaching the subject of disability doesn’t have to be an experience where parents feel ill-equipped to even start the discussion.

When a parent decides to show their kids a bigger world, they also promote one that’s more inclusive.

Article Author Rae Martens
Rae Martens

Rae Martens is an aspiring writer from Calgary, Alberta. She spends her down time crocheting, attending university and hosts a podcast called, My Complex Parenting Podcast.

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