A Question of Motivation

There is a swimming pool in a downtown health club, less than five blocks from my apartment in the historic district of Macon, GA. I pass the health club every weekday morning on my way to work. It makes sense for me to stop for a quick dip on my way to work - I like to swimming, and it's a good way for me to get physical exercise. And I know - with 100% confidence - that I'll feel better after I've done the laps. But I haven't gotten to the pool - not yet.

I don't get there for several reasons. Like so many people, I have a busy schedule, as well as some difficulty in motivating myself. My excuses/reasons include: It's just too much trouble to get to the pool.  There are only so many hours in a day, and I have so many things to do already!  I have to get the vacuuming done.

Some people may assume it's the fact that I'm paraplegic that keeps me from participating in regular physical activity. That's an erroneous assumption. It isn't really the physical affects of paraplegia (caused by a spinal cord injury more than 17 years ago) that limit my physical activities. Although the paraplegia certainly affects the way I live in my body now - I use a manual wheelchair to get around; I have partial use of my legs, and full use of my upper body - when there is something I really want to do, I can usually figure out a way to do it.

I might need to call on my creative problem-solving skills to figure out a way to get into the pool, since I can't just step onto the ladder, but so what?  If I ever reach the point of thinking this is way too much bother, that's an indicator that I'm not sufficiently motivated. The wheelchair is never a reason, or even an excuse, for not doing something physical.  Instead it's rather a question of motivation on my part, and my willingness to push through whatever physical limitations I may encounter along the way.

Since becoming a wheelchair user, I've participated in a variety of physical activities that people might assume I could not do.  These activities include getting up two full flights of stairs, with my wheelchair and a packback, without help from anyone else. My technique is fairly simple, though not particularly graceful.  After putting my backpack on my back, I transfer out of my wheelchair onto the first step. Taking hold of the wheelchair by the footrest at the front, I scoot my butt up onto the next step, and then the next.  Then I haul the wheelchair up a step, and repeat, repeat, repeat, until I reach the top of the stairway. I pull the wheelchair onto the landing, swing it around so I can haul myself up off the floor and into the seat, and settle the backpack onto the back of the wheelchair, where it usually rides.

I have also climbed 109 wooden steps, wearing two backpacks, en route over a portage during a week-long canoe trip; I've climbed up and over a snow bank, hauling my wheelchair up and over after me, and I've participated in an improvisational, full-body contact dance workshop, which among other things, involved rolling around on a wooden floor with a dozen other people.

More often than not, it isn't really the paraplegia that creates barriers to my physical activity. My internal emotional and psychological state is a big part of my struggle with motivation.  Another aspect is external, the world around me.

Whenever I go out into the world at large, to partake of life in my community, I come face-to-face with a variety of factors that influence my choices about what sort of physical activity I will undertake. These external factors include other people's responses to my presence in a physical activity setting, which usually elicit my (as yet unconquered) fear of other people's assumptions about what I am physically capable of.  This often ignites my anger at the pervasive, persistent and presumptuous myths about the physicality and abilities of people who live with disabilities.

The last - but certainly not least - factor influencing my physical activity is the inevitable list of questions: Is the place I'm considering accessible?  Will I be able to get into the facility?  Will I be able to use the equipment?  The toilet? The snack bar?  The telephone?  Will I be able to function independently, or will the activity become a major production involving a bunch of people who are ill-informed and embarrassed about the whole issue of disability?

Partaking of physical activity that takes me out into environments made up of a majority of non-disabled people and a minority of people with disabilities all too often becomes a complicated journey into disability education, awareness and advocacy, whether or not I wish it to be so. Often times I'm asked (rude and inappropriate) questions about how I function in my daily life.  When I'm asked, for instance, how I go to the bathroom or how I change my clothes, I have to decide how to answer or whether to answer at all.  Seldom do I enjoy the simplicity of merely being a person going to the YWCA for a quick lap swim before going to work.

There are people who have strange ideas about individuals with disabilities. Some seem to view me as a member of that group "affectionately" known as "those less fortunate than ourselves," and I am treated, either overtly or covertly, as if I were less than capable, effective, and competent. After all, " dis-" is a negative prefix, and refers to a lack, something missing, gone, absent.  Dis-ability means lack of ability, competence, and efficacy. It's not unusual to come upon people surprised to find that I do normal, everyday things like working or swimming.  If I were to mention in casual conversation that "I'm having a quick lap swim before going to work," I might encounter a great deal of genuine surprise, expressed as "Oh, you WORK?"

No doubt there are times when I take this all too personally or I misinterpret people's body language.  Perhaps when I think they are staring at my somewhat small and slender paraplegic legs, they are actually admiring my adroit maneuvering of my wheelchair. Nonetheless, whether they are pitying or admiring glances, the fact is: Getting stared at just plain gets old!  Seldom am I able to be out in public without noticing that someone notices me.

And it's not really a compliment when people are surprised that I can do things on my own, without assistance. We can all do some things unaided, and we all need assistance of one sort or another at times. Why should people with disabilities be expected to need help all the time, with absolutely anything and everything?

On the other hand, there is the "Super Gimp syndrome," in which everything one does is considered a major accomplishment, worthy of highest praise and commendation. Transferring my wheelchair and then myself into my car once elicited remarks of wonder and amazement from a stranger on the street.  Can you imagine what kind of havoc that might wreak on your self-esteem and self-perception, if you were to let it get under your skin?  I mean, gee, all I did was get into my car!  People do that every day - why is it such a big deal when I do it?  Just because I happen to have a wheelchair under my butt?

The truth is, all of us experience some form of limitation in our physical activity, due to the fact that we inhabit organic bodies that are far from perfect, and our bodies inevitably alter as we grow and age over the course of a lifetime. For me, it's a question of accepting the challenges I have - physical and otherwise - and making choices about physical activity that allow me to be myself and enjoy to the fullest the physicality of the body in which I live.

At times, it's very tempting to buy into the myth of the Super Gimp, to allow myself to become vehemently independent and to attempt all sorts of daring physical stunts simply for the shock it might cause innocent bystanders. But I made a commitment to myself a few years ago that I would at least attempt to resist the trap of over-compensating for my disability by trying to prove to everyone (or is it to myself?) that I can do anything a non-disabled person can do. It simply isn't true - I cannot do everything that other people can do; then again, not everyone can do all the things I can do!

I can take my dog, Bojangles, out for what I call "sniff & squirt, trot &. squat" at least twice daily. At my workplace, I am one of the only people who can give the children we serve a ride on my lap.  I'm also one of the only adults the kids can address at eye level, and when they offer me a hug, they get to hug the top of my, rather than my legs.

I can perform the original one-woman play that I wrote and produced and that has received more than one award.  In performance, I spend the first 15 minutes of the 45 minute one-act out of my wheelchair, which apparently takes some audience members by surprise. And, I can swim laps for an hour at a time - if I could just get myself to get out of bed at 6:00 in the morning.  Now this is a problem that's hard to solve.

Jaehn Clare works with the First Street Arts Center in Macon, GA, where she is developing a professional children's theater company.  She has more than 20 years experience e as an actor, director, and producer; her award-winning one act one-woman play is titled "belle's on Wheel."  As a disability advocate, Jaehn has designed and led workshops for audiences across the country and abroad.