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
“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.
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.
You 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.