This is a reprint of one of my articles I wrote for ABC Ramp Up. I suppose it's sort of a very small autobiography. You can read in its original form on the ABC website here if you like.
I can't say I remember much about when I was born, though I am pretty sure my mother would! I do know that I came out the wrong way, and was starved of quite a bit of oxygen in the process. This meant I had to stay in an incubator crib for a few days. Stressed nurses, confused doctors and distraught parents were a common occurrence in my first few months of life. I suppose I should be thankful I can't remember any of it!
From birth I wasn't a big fan of food, in fact I didn't eat any at all. To rectify this, and to keep me alive, I was fitted with a glamorous feeding tube at about five months old. It was in fact so glamorous, it was inserted straight up my nose - pumping me full of formulated goodness. I went from being emaciated to chubby within a few weeks. I'm reliably informed that an evil toddler pulled it out once. Mum didn't let me play with them again.
When I was around 18 months old, my tube was finally removed (by a doctor this time, not a child). I didn't remain plump for long, Mum told me all I could manage to eat in any one sitting were three Rice Bubbles. Still, it was an improvement over nothing, and I slowly built up my food intake to something approaching normal. Very skinny, but not life threateningly so.
At around the same time of the start of my tube feeding adventure, doctors noticed problems with my muscles and movement. I wasn't crawling, and in the end after almost every other disability and illness was ruled out through a myriad of tests, I was left with an uncertain diagnosis of cerebral palsy. It wasn't all bad though, my muscles suffered the brunt of its effects, as surprised doctors realised when I started speaking earlier than most. Luckily for me, my speech was not affected at all by my cerebral palsy.
A few years into my fledgeling life I was heading onwards and upwards, my spine however started to take a different route. It wasn't growing straight and it started gradually developing a curve due mainly to scoliosis, with a little kyphosis thrown in for good measure.
Doctors tried correcting it with a back brace, but after persisting with one for nearly 10 years, we finally realised it was just slowing the inevitable. As I am now, my spine has basically reached its maximum progression - a nice 180° curve. I suppose it looks cool in an x-ray, a near-perfect S-bend in my back!
I could bore you all with detailed accounts of my various surgery adventures, a tendon release here and an osteotomy there, but aside from all the previously mentioned medical dramas, I have actually managed to squeeze in a little room for me to live my life.
There are horror stories out there, recounting cases of devastating bullying faced by people with a disability. Fortunately for me though, I never experienced any bullying at both primary or secondary school. Perhaps this was due to me having a small but close group of friends. I was neither a social outcast, nor one of the ‘cool kids’, and while I wouldn't call myself socially inept - I certainly was never very outgoing at school and even now am quite shy and reserved.
Whilst at school I certainly understood that I had a disability and that this made me different from most ‘normal’ people, I never saw it as an issue. My impairments and problems rarely entered my day-to-day thought processes.
I was the only kid in primary school with an electric wheelchair and this unfortunately sparked a common question from adults - “You go to a normal school and not the special school?” Generally my parents were a lot more offended than I was, touting my ‘amazing intellect’ and the fact that I was ‘top of my class’. It probably wasn't true, though I know I did okay. My brain worked fine, just my body didn’t. Sometimes I felt the need to make it clear to people, by reeling off some choice parts of the times tables, or using a fancy word I didn't quite know the meaning of myself. It generally worked, it made people stop asking stupid questions.
Almost all activism and advocacy related to my disability had been handled by my parents. Until recently I’ve never had the need or the desire to organise my own care packages; or complain to shops regarding a lack of access. My mother organised fundraisers so we could afford early intervention treatment and exercise equipment. She rallied the community together in order for us to raise funds and purchase an electric wheelchair compatible car. But I’m an adult now, and my parents deserve a rest. Slowly but surely, I’m taking charge of my life.
I'm definitely guilty of blaming my disability and using it as an excuse for my various failings. It is very easy to use my wheelchair as an excuse to not go out and socialise; I can't get a taxi, my parents won’t give me a lift, there might be steps - the excuses are endless! But I am finally realising that deliberately missing out on opportunities is not a wise move under any circumstances. If you have limitations, which I certainly do, it is important to maximise the opportunities that come your way.
Having survived countless surgery procedures, physiotherapy and a slew of orthotic devices; that chapter of my life is hopefully closed. I can now pursue activities and aspirations that have nothing to do with treatment or prevention of illness and disability - but rather aim towards achieving goals and experiences that bring fulfilment and self-actualisation.
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