'Disabilities' challenge our perceptions

Meeting a woman with spina bifida shuffles columnist's attitude

Echoes Within

Renato Gandia

She was home alone and had to crawl to the door to let me in.

At first I thought I was at the wrong house. But I wasn't.

Soaring discomfort

Perhaps, I am a chosen one to have met and talked to this young woman whose self-esteem and self-confidence is definitely bigger than my discomfort with people with disabilities.

But once I began chatting with her, my preconceived idea that persons of physical disability tend to be fragile and that you have to walk on eggshells around them began to melt away.

Without saying it in so many words, Alyssa gave me the permission that it's okay to sit in front of her, get to know her and eventually tell others her story.

She was born with a birth defect called spina bifida. Spina bifida is the incomplete development of the nervous system and spinal cord.

The mystery of this physical disability has been with her for 27 years.

She had learned to cope with this difficulty and she said it doesn't really bother her.

"Some aspects of it are hard to deal with - not being capable of doing what others can do," she told me.

What she is proud of is having not been raised differently from her brother. "When he came along we were treated the same."

Admittedly, she said, there are certain chores around the house that she can't do, which her brother Tavis can.

She now uses a wheelchair to be mobile. "It's not that I can't walk, but it's too labourious. It had gotten to a point that when I'm walking from the living room to the kitchen I'd be huffing and puffing and felt like I walked a marathon."

After talking to Alyssa and her mom Cindy for some minutes, I thought my discomfort had totally dissipated.

Different ground rules

I did not want to be intrusive and insensitive. In journalism school, students are trained to be good journalists by asking uncomfortable questions. At that moment, that rule of thumb was not working for me.

"Are there certain points in your life that you felt deeply frustrated about your physical condition?" I asked her.

With a smile, Alyssa said "Definitely. There's certain times in my life that it certainly got me down in the dumps, but I just don't let it bother me.

"I am not saying that it doesn't bother me from time to time, but everybody has a certain time in his or her life that she or he is down in the dumps."

But she stressed it's not worth getting permanently depressed.

She's her own woman

My meeting with Alyssa and her mom was brief.

I don't claim I've gotten to know her deeply.

But talking to her for a few minutes led me to examine some things I did not know I was uncomfortable about.

She taught me one important lesson: Physical disability should not equate pity.

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