The Upside of Disability

Let’s be honest: There aren’t many positive aspects to living with a disability. I trip. I fall. Reality sucks. Life’s miserable. Disability ruined my life and undermined my independence.

These pessimistic thoughts dominated my life for almost 11 years after I received a diagnosis of Friedreich’s ataxia (FA) in 1994. But recently I’ve come to realize that these negative aspects distort the relatively few, but real, positive aspects to having a disability.

Disability has opened my eyes to the things that are usually overlooked by others — the selflessness and caring that people regularly demonstrate.

Signs of caring

Phil Bennett

I attend a university with a massive campus and get around using a manual wheelchair. I must wheel from one corner of campus to another in 15 minutes, across streets and up elevators, praying that the professor is later than I am — all without an aide.

Complete strangers often offer a friendly push in the right direction, sometimes all the way to the front door of my classroom — even if it makes them tardy for their own engagements.

As I roll toward the elevator, another student or sometimes even a professor may dart past me and press the elevator call button. Usually, they aren’t even getting in themselves — they’re going out of their way to save me time and effort. I never even have to ask.

California has very unpredictable weather, and once it began to rain immediately after a class. How was I going to get halfway across campus when rain was coming down in buckets, I didn’t have a raincoat or umbrella, and there weren’t any shelters?

A couple of students happened to be sprinting across the extensive courtyard huddled beneath a small umbrella clutched tightly against the wind. When they spotted me, they ran over and asked where I needed to go.

The husband immediately thrust their umbrella into my shaking wet hands and instructed me to hold it over both of our heads as he pushed me across the courtyard, up a ramp and into my building. After we caught our breath, we exchanged introductions, shook hands and went our separate ways — I to class, he back into the rain to find his abandoned wife.

Once I stopped to notice, I saw that my life was full of examples like these…. The 12-year-old girl who, without any sign from me, stopped eating to open the heavy door of the pizza parlor. The homeless man who helped my dad carry me in my wheelchair up a long flight of stairs to catch a train.

Once, on an airplane, an abrupt knee spasm sent my food tray flying all over a big gruff motorcycle guy in the seat across the aisle. He never complained, never swore, never even sighed — just scooped off the sludge, called over the flight attendant and said, "Can we get another chicken dinner for this young man, please?"

Call it luck, coincidence or whatever you want. I call it goodness, a sign of caring, a sign of kindness.

Communication is key

For a long time, I refused to think this way. I despised it when people treated me like a "helpless baby," asking if I needed help with rudimentary tasks. I still can’t stand that paternalistic treatment, and I still get it every day!

But I’ve learned these encounters don’t feel paternalistic when both parties approach the situation thoughtfully and respectfully. Helpers houldn’t be rude or patronizing, and — even if I don’t think I need help — I need to be appreciative of their offers. They risked my frustration by offering assistance; the least I can do is give my gratitude in return.

It all depends on communication. Once a sophomore offered me a push to class. After I said I’d appreciate the help, then she admitted she "wasn’t sure we’re supposed to do this." She was willing to give me a push even before she knew if that would be a reasonable thing to do!

This helped me understand the monumental importance of good communication between people with and without disabilities. The goodness in humanity is always out there, but we need to use a degree of communication to tap it.

So I get a free push, saving me a few calories. But what do others get in return besides a tardy to class or a drenched body? Sure, I give them a nice smile and some words of appreciation, but they could get that at a Burger King.

Perhaps it’s this: By being in a wheelchair, I exemplify the perseverance it takes to get up every morning, go to school, do homework and focus on the future. Maybe seeing my perseverance — and enabling it with their help — inspires people to persevere against the obstacles in their own lives.

In addition, my disability not only allows me to see the goodness in others, it encourages others to act upon their goodness.

The downside of normalcy

Bennett, skiing last winter

A disability renders visible the goodness of humanity. Sure, I want to walk again, I resent this disorder, I want to rid the world of it ... but is its riddance worth being blind to this goodness?

In a way, this is almost a downside to normalcy: "Normal" people don’t get to see the face of humanity that we folks with disabilities do.

I feel special and overjoyed when I get to an elevator and the button already has been pushed for me, or a stranger holds a door for me at the mall.

That feeling yanks me out of the pit of despair that my disability puts me in, slaps me in the face, and makes me remember that people do care, that I still am loved, and that I’m more than my disability has made me.

So, here’s the choice: Will you sulk about the disaster that a disability wreaks upon your life and dwell in the misery of its numerous negative aspects? Or will you recognize the positive aspects that it provides?

Choose wisely.

Phil Bennett, 21, lives in Fremont, Calif. He has Friedreich’s ataxia, and attends San Jose State University.