Spina Bifida – Abigail Vance

My 12-year-old daughter, who was born with a permanent disability, is one reason I write this column. For this week only, I’ve decided to let her take over my job of writing. So here is what she has to say in my place.

Abigail Vance: ‘I was born with spina bifida. When I was growing inside my mother’s womb some of the vertebrae in my lower back didn’t form correctly. So the nerves in that area were damaged. I have paralysis below the knees, and have it in a few areas above the knees.

‘Throughout life, since the day I got my first wheelchair, I’ve noticed that people aren’t always comfortable around me. Sometimes they ask, ‘Why are you in that?’ Other people look uncomfortable around me and don’t talk, and they seem as if they are trying to avoid me. I think some people avoid me because they think they can catch spina bifida and would have to use a wheelchair. But that isn’t possible.’

‘Sometimes people talking to me look at my wheelchair rather than my face. I wish they would look me in the eyes. When you talk to people who don’t use wheelchairs, you look at their face, right?

‘Occasionally when I’m around a lot of people that don’t know me, I see kids hiding behind their parents and asking, ‘What happened to her?’ I wish they wouldn’t be so shy so I could tell them why I’m like this. Instead, I often hear the parent say something like, ‘Be quiet, and don’t stare.’ But I like it when people ask about my disability, because to me that’s a sign they think I’m okay to be around.

‘There is another reaction people give to seeing my wheelchair. It’s my favorite. I like it when they accept me just as I am and don’t feel uncomfortable. I love it when kids ask if they can ride in my wheelchair. Some of the older kids don’t want to leave my wheelchair because they think the cushion is comfy. I like putting the smaller ones on my lap.

‘Although you may not think so, wheelchair users do have fun. We can do sports like baseball, hockey, and basketball. Usually the sport is adapted. This last summer I played in a baseball league adapted for people with disabilities. It was fun.’