My disability - I thank you
I am 31 years old and was born with Spina bifida and hydrocephalus. Growing up I had a brother and sister who were both able bodied and I was treated just like them. I used a frame, until I was 10 years old and a wheelchair and have continued using just my wheelchair.
I have a problem with the word disability and the perceptions it creates. I much prefer the term ‘differently abled’ – it’s more inclusive and ‘different’ implies more not less. When people hear disabled they think you cannot do anything when in fact there very little I can’t do. Disabilities are so diverse and society’s language does not reflect that diversity.
When I notice people staring at me at times, I want to say “Don’t stare. Open your mouth and ask!’’ When people ask me ‘What’s wrong with you? I reply ‘nothing.’
My experience at school was not entirely negative. Overall the kids weren’t’t bad – there was very little name calling and in most cases, it was a lack of understanding when people were hurtful. I found it more hurtful when teachers responded in an ignorant way. I went to Randwick Girls High – it was the only option as far as accessible schools at that time and the only school with a lift. I participated in most of school life. I was a part of the Northcott Disability Youth Group which just made it easier to do some of the things I wanted to do, like rock climbing.
I also did volunteer work after school as I had had health issues during my HSC and didn't feel I could continue with study at that point.
I am lucky to say I made very good friends during my school life and I have the same group of friends since. As a young person socialising is important and I went out to pubs and socialised just like any other young adults. Being in a chair has made me tougher than I would have been otherwise. I am both tough on myself and tough on others. My goal is to be as independent as possible and sometimes that’s harder for those around me. For example, when I decided to travel to the USA on my own with a girlfriend – I think it was hard for my parents to deal with. But I loved it and there are things that you simply must do.
When I was born and my parents were sent home with me, the doctors simply said, ‘take her home and look after her’. Obviously, the doctors did not think I would survive that long and were implying that my parents should not to expect too much of me. At the end of the day its love and support and the feeling of being wanted that sustains people who have a chronic illness.
After school, I went on to study youth work at TAFE. I am now working part time as a youth worker. We provide support to kids who are living a chronic illness and need support navigating from the pediatric healthcare system to adult health and the community in general. ItS easy for young people dealing with chronic health issues to feel despondent and lose their way. From my own personal experience, I know with love, support but most of all will and determination anything is possible.