Substitute teaching is a chance to educate children about disability

Here in the United States, fall is back-to-school season — something I’m very aware of as the mom of two elementary-age children. This year, the logistics of this season have looked different for my family and me, thanks to our community.

Because my balance has been deteriorating due to Friedreich’s ataxia (FA), transitioning to using a wheelchair full time was inevitable. However, I was unable to navigate the world outside my car without help from other adults due to my heavy wheelchair, limited abilities, and current SUV. That’s when my village saw a way to meet a huge financial need for me.

Last May, some of my best friends secretly started a fundraiser that allowed them to purchase a brand-new minivan. They had it shipped to BraunAbility, a company that manufactures wheelchair-accessible vans, where the minivan was customized to accommodate my wheelchair.

This generous effort left me beyond words. I am humbly grateful.

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After finding out my independence had been restored, the first thing my 10-year-old son, Brooks, said was, “Now you can be a substitute teacher at my school!” And that is just what I did.

I spent the next month completing all of the requirements, including paperwork, background checks, and training.

I was able to substitute one time in a kindergarten class before I fell and fractured my hip in early September. As soon as I can drive again and navigate outside of my home safely and independently, I plan to return to substituting because it was truly an incredible experience.

An advocacy opportunity

As my disability has become more visible, I have prayerfully decided to use my situation to help normalize disability in my community. Being an active part of my children’s lives means other young families are seeing someone who’s disabled, and I want that to be a positive experience for them.

With that in mind, I expected my first day as a substitute to be a long wheelchair show-and-tell with an unfiltered Q&A. I was right — but in the best way!

The questions the students asked were as funny as they were sweet and curious. I had to do a product demonstration about 10 times. Everyone was curious if my chair could only go forward, so I had to show them that it also goes backward and side to side. One student asked me if I sleep in my chair, and when I said, “Nope, I sleep in the bed just like you do,” he had about a million follow-up questions. He wanted to know how I get into bed if I’m sitting, so I had to explain that I can stand long enough to transfer.

Then a bunch of girls asked me if I could go up and down stairs, so I pointed out the ramp leading from the building to the playground and explained that I use those. I was so thankful for that teaching moment. Then a boy asked me if my chair could go on an elevator. “It sure can, buddy. How cool is that?” I said.

Lots of students asked why I use a wheelchair, including a sweet second grader. I asked her if she’d ever been on a boat, and if she’d tried to walk while the boat was moving. She said, “Yes! But I kept falling over because I couldn’t stand up. The boat kept moving, and it kept knocking me over.”

I explained that the ability to walk without falling over is called balance, and that’s what I struggle with. I said, “Remember how it felt walking on the moving boat? That’s how I feel when I try to walk. So, to stay safe, I use the wheelchair to get around and avoid falling.”

I am thankful for the opportunity to represent disability to curious young people who haven’t had any other exposure. I feel a renewed sense of purpose and am eager to return to substitute teaching.

“I will thank the Lord with all my heart as I meet with his godly people. How amazing are the deeds of the Lord! All who delight in him should ponder them.” — Psalm 111:1-2

Note: Friedreich’s Ataxia News 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.