A View of the World from Down Under

by Kristal Hardin

Looking at the world from the seat of a wheelchair is a new experience for me. Although I’m ambulatory, a manual wheelchair and “driver” are my new best friends when it comes to distances. I’m finding rolling along by the seat of my pants to be quite a challenge.

Ghost Rider

One of the first things I noticed is that people attempt to converse with me from behind my wheelchair. Either they want to see if I can still fix the back of my hair, or they expect me to do the 180-degree head twist like something out of a horror movie.

In all fairness, I’ve met a few who walk around and actually face me. And as I lift my head heavenward to talk to them, I envision these thoughtful souls becoming distracted by the wealth of silver crowning my pearly whites.

A memo needs to be sent out worldwide: Speaking to someone in a wheelchair is similar to speaking to someone in a regular chair. It’s common courtesy — and just makes sense — to plop down and take a load off to chat.

Submitting to using a wheelchair is a lot more difficult than I thought it would be, even though having me on wheels is easier for everybody.

I’ve also become Kristal, the Ghost Wheelchair Rider. People talk over my head to my standing companion as if I don’t exist.

And — on my last trip to a public restroom, one woman walked around me and entered the handicapped stall I was waiting to use as the other woman walked out! Invisible, I say.

Mr. Toad’s Wild Ride

My second awareness involves the magnificent people who push or “drive” my wheelchair. I think wheelchair drivers should receive only heartfelt praise and undying gratitude — with one stipulation. A person who pushes should first be a “pushee” for one week.

Why? Well, it may sound like an exaggeration, but anytime I’m pushed in a wheelchair, I’m handing someone else control of my body. I’m at their mercy. A wheelchair pusher needs to understand this feeling.

By way of example, I’d like to introduce several of my drivers.

Brandon Legates is a good friend with a gentle spirit. He’s a skateboarder, so his maneuvering skills rank up there with the best. He doesn’t expect crowds to move like the biblical parting of the Red Sea. Rather, he pushes me through a crowded street like a pro surfer riding the perfect wave.

Despite his youth, he remembers that my feet stick out beyond my knees and that my elbows need to be tucked in around corners. Brandon’s wheelchair wisdom is well beyond his years.

My dearest friend, Jo Jones, is a paramedic. She’d be the first to admit she has some unresolved anger issues that sometimes come out when she’s driving my wheelchair.

Jo feels that people with disabilities have the right-of-way in all situations. She demands that others get out of the way, as if my wheelchair has all the rights of the emergency vehicle she drives on the job — even if this includes ramming people’s legs with the footrest if they don’t move quickly enough. So beware!

Patty Doughtery, my sister-in-law, is a capable hospice worker. But her adult attention deficit disorder can make her easily distracted. My wheels follow the workings of her mind, which means that whatever she’s focused on at the moment is where I’m headed, with my front wheels taking most of the hits. These rock ‘n’ roll rides take on unique zigzag patterns.

My late son, Rob Hardin, should have come with a neon safety vest. With him driving, there were dangerous en-counters with curbs, pop-up wheelies, going too fast, going too slow, being released on downhill slopes...

When out shopping with Rob, I was frequently left in the “time-out” position facing store walls, counters or clothing racks.

But it’s not all about the drivers.

Sharing Control

Wheelchair riders have their own quirks. Since I’m new to the process, the biggest gripe against me is that I don’t speak up.

I’ve become Kristal, the Ghost Wheelchair Rider. People talk over my head to my standing companion as if I don’t exist.

My drivers remind me they’re not mind readers. I don’t ask to stop until I’ve already passed what I wanted to see. Sometimes I assume my driver has heard me say “stop,” reach for something and get my arm practically pulled out of its socket.

My fear is that I’ll come across as too demanding and my drivers suddenly will become too busy to push me around. I don’t want to seem unappreciative of the energy exerted on my behalf. But I’ve come to realize that the “sitting down” part is easy. It’s the harmony and balance of the rider-driver relationship that takes time to achieve.

This whole process of submitting to using a wheelchair is a lot more difficult than I thought it would be, even though having me on wheels is easier for everybody. It no longer takes forever to get me from here to there while I hang on to my companion’s arm and walk the speed of a turtle on tranquilizers. I can now carry on conversations instead of looking at the ground watching every step.

But this transition still takes time and compromise. There’s the chore of lifting the wheelchair in and out of the vehicle. There are those unexpected places a wheelchair just can’t go, or it takes too much work to get it there no mat-ter how badly everyone (especially me) wants to go.

I’ve found it takes a lot of love, laughter and even tears to get through all these learning experiences. And while moving faster is a perk, every so often I still shed a few “oh pitiful me” tears over the fact that I’m riding instead of walking. Independence dies hard.

The day will come when I’m the proud owner of a motorized scooter. Then the control will be back in my hands, so to speak. But until then, I need to continue to learn and share with others all facets of wheelchair etiquette, from where I sit looking at the world from down under.

It’s the harmony and balance of the rider-driver relationship that takes time to achieve.

Kristal Hardin, of Tampa, Fla., has limb-girdle muscular dystrophy.