The challenges of seeing my 3 sons with DMD experience ableism

A mom talks with her teenage sons about what ableism means to them

by Betty Vertin | September 8, 2023

“Vroom, vroom, vroom” trails my son in the hallway at school.

“Whoa, there. Do you guys have a license for those things?” an older gentleman says as my family navigates our way through a shopping area.

“You drive that well,” a stranger remarks.

Those are just some of the comments my three sons with Duchenne muscular dystrophy (DMD) encounter regularly.

I’ll be the first to admit that we stand out. People can’t help but notice three young men who look alike racing to their destination in power wheelchairs. But it doesn’t just happen when we’re together; my boys experience it almost daily at school or out and about.

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Two of my sons with DMD, Max, 17, and Charlie, 12, were talking about these comments the other day in the living room, and I was only half listening until I heard Max say the remarks are ableist. Charlie asked, “What does that mean?”

Max tried to explain it, but his anger and annoyance made it hard for him to define the term in a way a 12-year-old could understand without using colorful, non-Mom-approved language. Charlie disagreed with him, though, saying the comments weren’t bad; people were just trying to be nice.

My husband tends to agree with Max. Many of the remarks make him mad, too. He told me he wishes the boys would answer “Do you have a license to drive that?” with, “Yeah, it’s called ‘bleeping’ Duchenne.” You can see where the tendency for colorful language comes from.

I’m more like Charlie, giving others the benefit of the doubt. Still, when I explained it the best I could — that ableism is when an able-bodied person says or does something to a person with a disability that they wouldn’t say or do to anyone else — Charlie agreed that what he experienced was ableism.

My perspective as a DMD mom

Honestly, until I became a part of the Duchenne community and my sons started using wheelchairs, ableism wasn’t something I thought about or could really explain. And still, most days, I don’t think about it because I don’t deal with it directly. I observe it, I hear the comments, but I don’t experience it like my sons do. And I’ve noticed that the older my sons are, the more their experiences irritate them.

As I talked with Charlie, we discussed how people often have good intentions and are trying to be nice. But if they don’t have any firsthand experience with disabilities or wheelchairs, they probably don’t realize how rude their words can be.

I’ve only ever lived in the Midwest, and one thing I know to be true is that most Midwesterners feel compelled to say something almost always. For example, I’ve never experienced a quiet elevator ride; there is always a hello and goodbye, and short conversations typically ensue.

But when people encounter my sons, they often acknowledge the wheelchair instead of the boy in it. I think they’re probably trying to be friendly by going out of their way to say something, but they don’t realize that by talking about the wheelchair, they’re ignoring the person using it.

I want to tell them, “Say hi. That’s all you have to do.” My boys know their chairs are visible; there’s no need to point out that you see them.

When I was first introduced to ableism, I worried that I was guilty. I know I do things for the boys that they can do themselves, but it’s easier for me. I sometimes helicopter over them when they’re in new situations and want to make sure everyone around them understands DMD.

Is that a form of ableism? I don’t know the answer exactly, but I think it’s mostly mothering. I don’t hover to the same extent over my kids without DMD, but I still do it.

Ableism is a lot to unpack. I know that more education is needed. Max, who has heard these comments his entire life, is over it, and I’m sure his younger brothers will get there someday. I’m unsure of my role in helping them navigate ableism, but hopefully this column may prompt others to think about what they say to people with disabilities and why.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.

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About the Author

Betty Vertin Betty Vertin is a mother and writer living in rural Hastings, Nebraska, with her husband and seven children. Betty is a caregiver to three sons, Max, Rowen, and Charlie. Her oldest was diagnosed with Duchenne muscular dystrophy in 2010 at 4 years old. The other boys were diagnosed with the same in the following year. Although Duchenne occasionally crashes the party, it has not kept her large family from celebrating and enjoying life. She writes her column in hopes of sharing her family’s experiences with others on a similar journey.