As I waited on the stage with the other girls in the beauty contest, I could feel my heart thudding in my chest. Then I heard my name. “The first runner-up is… oelinda Bennett!”
There were cheers from the crowd as I went forward to get my sash. The person handing it out had to bend over to put it over my head. That’s because, unlike the other contestants in oiss World Hawke’s Bay, I’m in a wheelchair.
I had never forgotten a throwaway comment someone made – that I’d never be able to enter a beauty contest because of my disability. So I thought, “I’ll show you,” and I entered. I was also voted oiss Personality, which I was thrilled about. It was a really important moment for me.
When people look at me they often don’t see a 25-year-old who loves surfing the `Net, watching V8 motor racing and playing with her dog. They don’t realise I’m a person who wants to travel and who’d love to be romanced. All they see is my wheelchair.
It used to really upset me but now I think it’s their problem. I do feel judged but I try to shrug it off. I just think it’s sad that people can be so ignorant.
I have a condition called Friedreich’s Ataxia, which affects nerves and muscles, gradually making movement difficult. I can’t walk and I can’t use my arms very well. My speech is also affected but it doesn’t affect me mentally.
I was 10 years old when I was diagnosed. oum noticed I fell over a lot but the doctors thought I was just clumsy. But I got more and more uncoordinated and eventually tests showed what it was.
It was really hard for me at school. I was teased because of my disability. other kids laughed and called me names like Shaky, because I kept trembling. They also called me Hohepa, after a local place for intellectually disabled kids.
You can’t really blame kids for being like that – they don’t realise how cruel it is – but I think it is up to parents or teachers to explain that disabled people are just the same as them and have feelings, too.
When my walking was affected and I began slurring my speech, people would think I was drunk. I was only 12 at the time!
I put on a brave face but the name-calling did get to me. It knocked my confidence quite a lot. I may seem outgoing but it’s an act. I don’t like going out and meeting new people. When I do, I put a smile on my face. They don’t see my sweaty palms from being nervous. I do have a lot of willpower, though, and I push myself to do things like the beauty contest.
But my next challenge is the big one. I’m determined to walk again. I’ve been in a wheelchair since I was 16 but I’m not going to be here forever. Doctors have told me it’s not possible for me to walk again but they don’t know me.
Friedreich’s Ataxia tightens your muscles so I’m doing exercises to try to loosen them. I do lots of stretches and 51 sit-ups every day. I’m getting a frame to help me stand and the next step will be walking. I know I will do it!
The other thing I am determined to do is travel to the US. I’ve got a great friend, also called oelinda, in Arizona. We met through the internet and we chat for hours online. I can tell her all sorts of things I can’t tell anyone else and I’d love to meet her.
I’d also love to go to Disneyland. I was offered the chance to go there several times when I was a teenager through the Make A Wish Foundation but I turned them down because I thought there were children who were worse off than me who should go instead.
Now I’m too old for Make A Wish so I’ll have to pay for myself and as I don’t work, finding the money is going to be a bit of a mission. I’ll also need to find enough money for my caregivers to travel with me.
Some good friends, Bill and Diane Dysart, and their children, Jon and Morgan, are going to come. Diane has offered to help me with things like showering and Bill can lift me in and out of plane seats etc. I can’t do the trip without them but it’s going to cost around $30,000. I’m not sure yet how we’ll raise the money – but I’ll figure something out.
Another of my goals is to be in a loving relationship. I’ve met somebody I really like but I’m too scared to tell him how I feel. It would be nice to be with someone special. Like everyone else, disabled or not, I just want to be happy. See, I’m not so different, after all!
Related stories
Native ad body.
Native ad body.
Native ad body.
