I don't remember a time when I 'realised' my brother had cerebral palsy. I always knew Charlie was different, but I didn't always know how to explain that to my friends. I certainly knew he wasn't stupid. Just because he had trouble talking, didn't mean he had trouble thinking, but nobody else seemed to understand that.
I remember people staring at us as we walked down the main street of Griffith, or -- even worse -- seeing other children do their 'retarded imitations', cocking their heads to one side, while dribbling with flailing arms and saying something like: 'Look at me, I'm a spaz'. Sometimes these imitations were performed behind our backs, other times the performers weren't even ashamed enough to hide them.
My Mum had told me that Charlie had almost died when he was born, which meant he was lucky to be alive, rather than unlucky to be disabled. Because of this mindset, I always felt my brother was viewed as a gift, rather than a burden. We grew up believing every life is precious and never doubted that our parents loved us all equally. Caring for Charlie would help us all be better people, more compassionate, more sensitive, more grateful.
So when I went to boarding school, it was a terrible shock to hear other girls saying that if they had a child with a disability they would put 'it' in a home and pretend 'it' didn't exist. 'I'm not going to let it ruin my life,' I remember one girl saying. I couldn't understand how anyone could think like that. Charlie had most certainly not ruined our lives. We loved him dearly. He was a person, not an 'it'.
As a teenager, I went through a period of anger in relation to my brother's disability. Now I realise I was probably grieving on his behalf, coming to terms with all the things he would never do. It seemed unfair. This anger rarely expressed itself, except when thoughtless kids at school would bandy around the word 'spastic' as an insult.
I would try to explain why it was offensive to use the word 'spastic' to mean 'stupid' or 'incompetent', but they never seemed to understand and the teachers rarely backed me up. I was overly sensitive and shouldn't take it so personally.
My older sister had an even more traumatic experience. As boarders, we had to write on a leave sheet where we were going when we went out for the day. When she wrote that she was going to The Spastic Centre, (now Cerebral Palsy Alliance) she was hauled up in front of the housemistress and reprimanded for trying to be funny. Although she insisted that she was actually going to The Spastic Centre, the housemistress repeatedly demanded to know where she was really going.
During my teenage years, Charlie developed a passion for radio. He visited a number of radio stations, including 2CH, his favourite Sydney station. It was his dream to work on the radio. Around the same time, one of my English teachers told me I had a great voice and should find a way to use it. I have often wondered how much my decision to pursue a career in radio was a result of my own interests and how much I was influenced by a subconscious desire to fulfil my brother's long-held dream. Either way, it worked out for me, because I've loved every second of working on-air.
For a long time, I wanted my brother to do something amazing. In the media, people with disabilities are always portrayed as victims or as overcomers of adversity. We want them to climb mountains, or set a world record. There was a time when I wanted Charlie to take on the world, to write a book or star in a movie. It took me a while to realise that Charlie most enjoys the simple pleasures in life: time with family, a glass of red, sitting outside in the garden. He wouldn't have been climbing mountains if he was able bodied, so why should he do it just because he's disabled?
And that is the truth about my big brother -- he's actually a pretty normal guy. Sure, he looks different, but he's not that different on the inside. He's a kind man, a son and an uncle. He's secretive about his girlfriends. He likes good coffee, going out for a nice dinner, spending time with family.
I recently asked Charlie: "If you had one wish, what would you ask for?"
"I would like to do more things for myself," he replied. "Make my own coffee, pour my own wine."
October 7 is World CP Day and I have a few wishes of my own. My hope is that, through greater education and awareness of CP, I won't ever hear someone use the word 'spastic' in a derogatory fashion, that my own friends won't avoid talking to Charlie because they're afraid they won't be able to understand him and that nobody will ever again speak to my intelligent big brother as if he's not all there.
Because when you look beyond the disability, what you see is a real person, who's not that different from you.
Katrina Roe is a picture book author who has just released her third book titled Same, which is dedicated to her brother Charlie.