Friday, December 19, 2008

Vulnerability, invulnerability and disability: Where's my power up?

One day my nephew and I were talking about our disabilities. He was describing a situation in which he felt vulnerable to teasing by other kids due to having to do something in a different way. When I explained the word vulnerable to him, his eyes widened and he said "Oh! I heard that before. In video games, you're invulnerable if you use power ups." Then he shrugged and said "I wish I could do that in real life."

Many people with disabilities blog about vulnerability and disability, although they may not ever use the word vulnerable. However, it's there, part and parcel, when they speak of depending on caregivers or equipment. It's there when you go out in public looking different, doing things differently. It's there when you have to follow arbitrary rules that don't work for your situation, that are set in place by those who have never been disabled, who don't understand what living with a disability is like. It's there when you're so tired because your equipment broke, yet you have to carry on as if nothing's wrong.

It's there when your disability involves hidden factors that no one can see or understand as well. There's a vulnerability to that which is different - a loneliness, perhaps, an angst that many write to me about , almost envying that my disability is so visible. And I understand that because my disability also involves things people can't see.

I told my nephew that I've learned that people react to my vulnerabilities differently. Some are protective while others act inappropriately. They may laugh or tease or even take advantage. Then there are those folks who are real enough to just be around my disability without acting too differently. I can sense when people see me, not just the disability. But in the end, the choices I make - and that he will make- about living with a disability are in his own control. It is, so to speak, him at the joystick.

I explained to him that "power ups" involve things like working on your self esteem and using a sense of humor to get through situations. "Power ups" also mean not accepting the labels and boxes that come with disability and insisting, through perseverance, on doing what's important to you.

My nephew just made the honor roll last semester, so I know he was listening. I know he had to fight off lots of those "enemies", just like in video games, like uncertainty and fear. He had to arm himself with the right equipment and bring team members with him who would help him out as he went through level after level. And, most of all, he had to remind himself that those "power ups" are always there within his reach, even when he feels most vulnerable.

Yes, he is a winner. I am very proud of him.


Julana said...

This also applies to parents of children with significant disabilities.

Wheelie Catholic said...

Julana - ::Nodding::: thanks for your comment.

Greg said...

I really like the concept of power up's, it sounds like very good advice. I'm glad your nephew made the honor roll and I'm sure he will continue to succeed! Have a great weekend, take care.

Wheelie Catholic said...

Thanks, Greg, hope you have a great weekend too :)