Josh McDermott: "Nothing More Rewarding Than Serving My Peers"

We first talked to Josh McDermott in 2009, when he was a high school student. His mobility device at that time was a Pride Mobility Products scooter, and he’d recently started collaborating with the Pride team. Josh and his mother, Joanne, talked candidly about what it was like to grow up with Limb-Girdle muscular dystrophy and use a scooter for mobility.

“I get a lot of questions,” Josh said at that time. “Anywhere from ‘Why are you on that?’ to ‘Oh my gosh, I want one of those go-karts!’ I thought I’ve heard everything, but every single day, I hear something new, and I’m just like, wow. It’s interesting.”

Asked what advice she’d offer to parents of a newly diagnosed child with muscular dystrophy, Joanne said, “Deal with the facts, and educate yourself about the illness, but also try to take it one day at a time and try not to project too far into the future. With my family, people get really upset because they’re thinking long term, and ultimately you only have the current situation, and you just keep adapting the situation as you go along.”

Today, Josh is a consumer service call center rep and spokesman for Quantum Rehab. His work includes making public appearances at industry events and talking to consumers about assistive technology and his own experiences. He’s become confident in that role, articulate and poised, but always smiling and approachable.

We caught up with Josh to see what he’s been up to since our last official interview. — Ed.

Josh McDermottYou started collaborating with Quantum Rehab while you were still in high school. How has your life changed since then? How has your technology changed to keep pace?

I first became associated with Quantum at 16. I’d been diagnosed with MD at 10, but it began really progressing at 16. By 20, I needed a power chair full time. To go from walking to needing a scooter, then a power chair, all within a few years was an eye-opening experience. Nothing prepares you for that, as well as knowing that’s how the rest of your life will evolve. So, it was a confusing time. But those years taught me to take the day-by-day process in stride and live to my fullest potentials.

What’s intriguing is that here I am nine years later, and Quantum has evolved with me. When I lost the ability to do typical transfers, for example, iLevel [powered seat elevation] emerged and plays a vital role in my ability to remain independent as much as possible. I can’t stand up, but because of iLevel, I can elevate, scoot to the edge of my seat and perform pivot transfers and use the restroom. That’s allowed me to keep a remarkable independence that I otherwise wouldn’t have. So, really, Quantum and I have evolved together.

Your work today puts you in a position to talk to policy-makers, clinicians and consumers, including parents of children who have muscular dystrophy or other mobility-related conditions. If you could give parents advice on how to raise children who have muscular dystrophy or other challenging conditions, what would it be? When you were growing up, did you receive any advice that was particularly helpful to you?

My parents have been the best lesson of all. Regardless of my condition and changes over the years, they’ve supported my independence.

It would be easy for parents in the situation of mine to rightfully be over protective. However, my parents have supported my independence even when it may have kept them on pins and needles. Sometimes we forget that a person with a disability is just a person, and they need to explore, learn and grow. My parents have done an amazing job of being fully supportive as needed, while giving me room to grow and find my own way, regardless of MD. That’s parenting at its best.

Describe the work you do today. What do you enjoy most about the job? What’s most challenging?

As one who uses rehab technology full time, I know the challenges of living with a disability. As both a spokesman and call center representative, what’s most rewarding to me is being able to relate to our consumers from their perspective of living with disability. But it’s also the most challenging. Every day I hear the struggles people face, and while I’m glad to be part of the solution, it’s tough because I’ve dealt with many of their emotions myself. So, there’s a very real connection that I have with our consumers, both in complex rehab and disability experience. There’s nothing more rewarding than serving my peers.

This article originally appeared in the October 2016 issue of Mobility Management.

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