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To the Mom Who Dreads Getting a Wheelchair for Her Child

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I recently read your article about not feeling ready for your child to start using a wheelchair, and it brought back so many memories for me. I understand that many parents go through similar emotions when it’s time for their child’s first wheelchair. Mine did, too. But when I read your words, I was seeing them from a different perspective: that of your child. Of course, our experiences aren’t exactly the same, but I’m hoping by sharing what it was like for me to grow up using a wheelchair, I can help ease your mind.

I was born with cerebral palsy and have always had limited use of my arms and legs. I still remember being carried in a backpack on my dad’s back, which I loved, and being rolled around in a stroller past the age most kids use them, which I hated. The rest of the time, I crawled around on the floor. It was good for me, up to a point; kids spend lots of time on the floor, and it’s important for our bodies to change positions often. But I had no independent movement outside the house at an age when other children are jumping, climbing, and exploring, and I missed out on a lot.

I still remember getting my first wheelchair when I was 5 years old. It was so cute, with a red frame and olive green corduroy upholstery. I could tell my mom was sad on the day it arrived, although she tried to hide her feelings. But I was excited! I finally had a way to move around that wasn’t babyish like a stroller, and I could push it myself, at least sometimes.

In elementary school, my parents and teachers did everything they could to make sure I was included. My classmates would take turns helping push me to places like lunch or art class. I spent recess out on the playground with other kids, so I rarely felt left out. I didn’t feel sad about my wheelchair. It gave me freedom.

Karin at the Grand Canyon, age 14.
Karin at the Grand Canyon, age 14.

As I got older, that started to change. In middle school, I was bullied and felt increasingly socially excluded. I became acutely aware of the limitations of my wheelchair. I have little strength and coordination in my arms, so although I could push my wheelchair slowly on hard, flat surfaces, I couldn’t get up hills, and even rolling on carpet was a struggle. I also couldn’t pop wheelies, so if I hit a large bump or threshold, my wheelchair would tip forward and I’d fall on my face. At an age when most girls enjoy shopping and spending time away from their parents, I couldn’t go anywhere independently.

My doctors and physical therapists started talking about me getting a power wheelchair, but my mother was vehemently against it. She believed I would lose physical ability if I didn’t have to wheel myself, and that I would be seen as “more disabled.” I bought into her views at first, but over time, I started to think about how my life would be different if I could have a power wheelchair. Finally, when I was 15, we had a terrible argument. I don’t remember what it was about anymore, but I remember her saying, “If you don’t do this, you’ll have to get a power wheelchair!”

I replied, “Good! I want one!”

She was taken aback. She had tried to use a power wheelchair as a threat, assuming I would view it as negative just like she did, but I had come to realize that a power wheelchair would be great for me. She didn’t understand how helpless and isolated I felt from my peers. She didn’t understand that the problem wasn’t my disability, it was that I didn’t have the right mobility equipment. But I knew. And when I said those words, everything changed.

A few weeks later, we went to test out power wheelchairs. I remember sitting in one for the first time and zooming around the parking lot, my service dog running by my side. I had used mobility scooters, but this was different. I felt like I was flying. I had never felt so free. I got a power wheelchair just like the first one I tested, and I’ve had one ever since. I’ve gone to college, traveled all over the USA, I have a great job and I love to spend time with friends. I wouldn’t have the life I enjoy today without a power wheelchair.

As my mother witnessed my newfound independence, her perspective shifted. She eventually came to enthusiastically support my life journey as a power wheelchair user. It was a key step in her own growth into fully embracing the idea that disability is just a different way of being. Our relationship, which had become fractured during my teen years, improved greatly.

There is nothing inherently bad about wheelchairs. We are the ones who put baggage on them. Yes, some are “medical-looking,” but that’s because they are not considered “cool” like a Hoverboard or Segway, so little effort is spent on their aesthetics. We can change that. If a wheelchair looks like something sad to you, make it happy. Paint it with your child’s favorite colors, or add fancy lights, or stickers from their favorite TV show. Some people name their wheelchairs — how do you feel sad when your child is racing their friends in the Screaming Yellow Zonker or sneaking up behind you in the Purple Ninjamobile?

For parents, watching a child take that first step is a joyful moment, but it’s also bittersweet. It means that soon you won’t be carrying them in your arms anymore. In a few years, they’ll go to school, and before you know it they’ll be adults and the years will have flown by so fast. Parents of kids with disabilities don’t necessarily experience the same milestones, so sometimes they try to hold onto their kids’ younger stages longer, or see the different transitions in their lives as occasions to mourn. But it doesn’t have to be that way.

If we shift our perspective, watching a child take his or her first ride around in a wheelchair, learning how to push or drive it, can be the equivalent of taking their first steps. It’s a bittersweet moment, yes, but also an occasion to celebrate. It’s a time of newfound freedom and self-discovery for your child, a chance to have fun exploring all life has to offer. Even if your child can’t move themselves around with any available wheelchair technology, it will still give them more opportunities to see the world and interact with peers. A wheelchair is a source of joy, not sadness.

Using a wheelchair can improve your child’s positioning and health. Using a wheelchair, especially if you also get an accessible vehicle, can make “quick trips” easier. Using a wheelchair can  reduce back pain and exhaustion from lifting, so you can do more with your child and take care of your own body’s needs at the same time. And most importantly, a wheelchair in no way limits your ability to hold, snuggle, or carry your child whenever you want. Your child can and should still spend time out of the chair: playing on the floor, using other mobility equipment such as a stander, and cuddling on the couch. If your child starts walking soon, as you’re hoping, a wheelchair will still be useful for long distances and sick days.

A wheelchair is a mode of transportation, another resource you can use to make your child’s life better. It gives freedom and takes nothing away. Don’t fear the wheelchair.

I wish you the best with your parenting journey.

Follow this journey on Free Wheelin’.

Originally published: October 14, 2016
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