Teaching students about life with limb-girdle muscular dystrophy

As most of America’s children go back to school, I thought it’d be timely to offer readers my perspective, as a retired teacher and wheelchair user, on the beginning of an academic year.

I began teaching middle school music and band in the fall of 1995. I was 22 years old and had just graduated from college. I’d been living with limb-girdle muscular dystrophy for 10 years and was walking without any braces, much less using a wheelchair. I had the standard “waddling gait” that’s a telltale physical sign of a muscle problem. I knew the students would see my different-from-normal movements immediately, and I knew I’d need to address them in each class during the first few days of school.

But I was young, inexperienced, and nervous. I remember my own adolescence as a difficult time (don’t we all?), as kids at that age can be quick to judge and ruthless in their teasing of anything that doesn’t fit into their immature worldview. I quickly gave my classes a brief overview of my “special muscles” and fear of falling. I told them not to worry about it, and that was that.

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How I expanded my talk over the years

Three weeks later, while working with the drummers before a high school football game, I fell in a classroom while putting on a windbreaker, resulting in a spiral fracture of my right femur.

A rod was put in the bone with a few screws, and I was told it’d be 12 weeks before I could fully bear weight on the leg. I returned to school after three weeks using a manual wheelchair. Now I did need to explain how having muscular dystrophy looked and felt.

I regained the ability to walk later that autumn, but it was never as easy as it was before the fracture. As each school year began, I started to talk n​​ot only about the basic science of my limb-girdle, but also how to treat and interact with disabled individuals. Many students over the years shared stories of relatives who were aging, disabled from war, or living with other chronic illnesses.

These conversations became teachable life moments, but I never went there on day one or even two of the school year. Those days were all about getting to know my students and having them get to know one another.

In 2010, I transitioned from a manual wheelchair to a power one, so my talk expanded to include the technology behind such a product, my gratitude that these treatments exist (yes, I feel that a wheelchair is a treatment — it’s my legs now!), and the way I now drove my car using hand controls. The kids loved it and were eager to know more.

By that time, I’d refined my talk to include that they should never look upon a wheelchair user (or any disabled individual) with pity or sympathy. I let the kids know that I travel, have been in love, spend time with friends, work, and have hobbies, goals, and dreams, just like everybody else.

In my classroom, I showed thousands of students over the years that I live life to the fullest and am the same on the inside as they are. The only big difference is that I sat down while doing most all of those things! I’m now retired, but I hope my students learned that society needs to look upon disabled individuals, both young and old, simply as individuals.

I wish all teachers and their students a wonderful, fun, and exciting school year. No matter what subject and age level you teach, you have the awesome opportunity to teach life to all of your classes. Take full advantage of it!

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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.