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A "spastic" childhood

(A transcript of the speech given by Andrew Higgins at the Scope Annual General Meeting 30 October 2002)

"Firstly, I'd like to thank Scope for inviting me here today. I think Scope is a tremendous organisation, and it is an honour to be associated with it. I have been asked to say a few words about my own experiences about growing up with a disability, for what it's worth.

But before I do, I'd like to say that the very reason I'm here today, is because I had the privilege to work on a remarkable case, on behalf of a remarkable woman - Rolah Anne McCabe. Tragically Rolah passed away this week, after a long heroic fight with lung cancer. Rolah's courage and sheer will, was an inspiration to all those who knew her. And in her struggle for justice, Rolah created history, whatever the final outcome of her case will be. It was an honour to represent her, and to know her.

It is difficult to generalise about living with a disability. All of us have very different impairments, and different degrees of impairment. Our experiences can also vary dramatically, however there are some recurring themes that I think ring true for all of us. It's a story of rare but terribly cruel discrimination, many good intentions sadly misplaced and all too frequent neglect.

There are really only two things I know about my disability. The first is that I have one. The second is that it doesn't really matter. I'm a "spastic" - I know that much, though I often forget. Many times well meaning doctors have sat me down in their rooms and patiently tried to explain what is supposedly wrong with me. You see Andrew "Here on the right is a picture of what a normal brain looks like… and here on the left is a picture of your brain, and you can see all those dark empty chambers full of liquid, where your brain should be, but isn't." I can assure you that was not something I've always wanted to know!

So there I would sit, nodding in all the right places and trying to look interested as the doctors threw bigger and bigger words at me, when in truth all I was really thinking about was getting out of their surgery -and getting on with the rest of my life.

So instead I'll have to give the layman's version. I was born with cerebral palsy. There was no accident or birth trauma. I just came out that way. The right side of my body is very weak, and I have little control over my right limbs, other than to perform the most basic functions. My left side is also weakened, though very few people would recognise it. The main problem is that my brain struggles to direct messages to my body - if I try to close my left hand, my right will do the same. Even when cleaning my teeth both hands are keen to get in on the act. Put simply I think my wires are a little crossed. I sometimes imagine that the little men inside my head in charge of these things have fallen asleep on the job, and every time my brain sends a signal they wake up with a fright. Not having a clue what the message was, and not having any better ideas, they decide to send the message everywhere - just to be sure. I know it's not a very scientific explanation, but when the alternative is comparative scans of my poor brain, I'm sure you'll understand why I prefer my own version.

My life as a person with a disability began simply enough. There was no indication of any problems that I might have - or more importantly, any problems the rest of the world might have with me. But by the time I was one my parents were becoming increasingly concerned that I was not doing the sorts of things that young children should be doing - and so my mother hauled me off to the doctor's for clinical observation. The doctor initially said there was nothing wrong with me. He was right but for the wrong reasons.

Over the next ten years I was "clinically observed" more often than I care to remember. I had mobility tests, hearing tests, sight tests, intelligence tests - the works. I trouped into the children's hospital so often it became a second home. But to this day I still have no idea what it was all about. For all the apparent fuss, there were very few things, that with a bit of help, I couldn't do. I couldn't crawl when I was young, it took me a little longer to learn how to walk and I had to wear a keleper. I needed help dressing myself (and still do) and for most purposes my right hand only comes along for the ride. But while I was never going to play full forward for Collingwood or open the batting for Australia, that didn't stop me from playing kick to kick or a game of backyard cricket.

Community understanding about what it means to have a disability is limited. As a result often even the best of intentions can be sadly misplaced. Having a disability is often viewed as a terrible affliction, which you must "overcome" - and there are always many sincere people willing to cheer you on when you "triumph over adversity." This is by no means a terrible thing, but ultimately I don't believe it is a helpful approach. A newspaper article that was written about my involvement in the McCabe case, is a good example. The article made a reference to my disability, which I found rather bemusing. It said,
HE is 24, has recently graduated from law school -- and he's played a crucial role winning a landmark case against one of the world's biggest tobacco companies. To top it off, young articled clerk Andrew Higgins has cerebral palsy.
I simply don't know what that's supposed to mean. Is it a good thing? Is it a bad thing? I can guess, but the fact is, it was simply irrelevant - like saying "And to top it all off Andrew barracks for Collingwood." At least the latter can explain my high blood pressure and occasional bouts of depression, but the former says nothing.

The idea that all people with cerebral palsy might also be "deaf and dumb" couldn't be further from the truth - and even when cerebral palsy does affect one's intellectual capacities, this does not mean we are "vegetables" incapable of functioning as normal human beings.

One of the weirdest episodes of my early childhood was when the doctor warned my parents that my intelligence might be affected. He didn't use the word "vegetable" but the imputation was clear. My parents were devastated. In a touching but bizarre gesture, they seriously contemplated buying me a nursery in the hope that I would develop a love of plants and live my life growing flowers. In the end I completed my VCE winning the Australian Students prize and graduated from Melbourne Uni with a law arts degree with honours. Yet strangely now, when I'm wading through absurdly complex legal arguments as a lawyer, I feel somewhat nostalgic for my shadow life as a gardener, and daydream about being out in the sun tending lilies.

My father now claims he always knew I wasn't slow. For even when the doctor was describing my lack of mental prowess, I was busy exploring all that I could around his surgery. I didn't have the strength to crawl so instead I rolled my way around, using my left arm and leg to steer myself.

However this certainly wasn't the act of a childhood genius. Far from it. But in my own way I am rather proud of my efforts that day. One of the things that does come to the fore when one has a disability is the extraordinary capacity of people to adapt to their circumstances. There are many amazing examples - all of them far more inspiring than mine. And while behind each story there's plenty of individual courage, what inspires me most of all is that in the end this is simply life playing itself out - adjusting to our environments and compensating for our physical limitations is something humans have done since the dawn of time. People with disabilities are no different. We simply face more challenges. We need appropriate levels of support - not patronising concern. This should go without saying, and is said often enough in public life, but following through the sentiment with meaningful action is sadly, not always guaranteed. Probably the greatest obstacle most people with disabilities face is neglect. Often there is simply not enough resources to adequately cater for their needs, or worse, their needs are overlooked altogether.

I have been fortunate is this regard as I come from a privileged background. However disabilities do not recognise socio-economic differences. It would have been far harder to have accomplished the things that I have, had I been born into a working class family. Yet even with my background, I have experienced first hand the neglect that complicates life with a disability. Soon after it became apparent that my parents didn't have to buy me a nursery, and that I could look after myself, to many my disability became virtually non-existent. Some even suggested that I didn't really have a disability at all.

Yet my disability was substantially affecting my life at the time, and my studies in particular. For example my hand-writing skills were well below average - I was much slower than most, and I found writing for long periods very tiring. But this was never picked up until very late in my school years. I was always last to finish copying down notes from the blackboard. Yet my teachers claimed this was because I was a rebellious trouble-maker who just didn't concentrate. This criticism, I must admit, was not without some merit, so I too dismissed my slowness. But in my last year, when I actually did start taking school seriously, I was still far behind everyone else. It was only then that we realised there was a problem, and that a physio identified my cerebral palsy as a cause. Fortunately my parents were in a position to buy me a portable computer so I could complete my studies and do my exams. I'm sure others aren't so lucky.

The irony of this situation, is that while my disability had been forgotten by those who were in a position to know better, my fellow students were ruthlessly letting me know that I was a "spastic." One of the most difficult aspects of growing up with a disability is that often the very first time you realise you are different, is the day you walk through the school gate. It's rarely a soft landing. Kids can be extraordinarily understanding, but also unspeakably cruel. I experienced both. It is impossible to describe how distressing it is to be picked on, beaten up and humiliated simply because your limbs don't work properly.

Some might say in hindsight that such an experience makes you stronger, more determined and can broaden your outlook on life. But I disagree. You don't have to be humiliated to be humble, or be discriminated against to be tolerant. Discrimination can act as a motivator, but surely the aim is to allow people with disabilities to become happy, well adjusted members of the community - not make martyrs out of us. It took me a long time to learn this. For many years I loathed my peers and just wanted to beat them. Later I realised that this approach was pointless - the only thing that mattered was proving to myself that there was nothing wrong with me.

While I have not experienced such blatant discrimination since leaving school, discrimination in the wider community is not uncommon. It's not difficult to see where children pick up their prejudices. They could certainly do with some more role models. Yet too often they see leading sports-people and even leading politicians make demeaning and offensive remarks about people with disabilities. The Lleyton Hewitt incident at the 2001 French Open is a noteworthy example. My initial reaction to his comments ( Hewitt had called a linesman a 'spastic') was one of shock. I thought it was outrageous and appalling. It only then dawned on me that he was actually talking about me.

I couldn't care less what anyone called me, I know who I am and what I can and can't do. But I'm sure there were many others who were deeply offended. Whether or not they were, such comments were totally out of line. It's not a matter of political correctness (an idiotic phrase if ever there was one). It's simply a case of showing basic respect for the dignity of your fellow human beings. Those responsible usually protest that they didn't mean to cause offense. This is not beside the point. It is the point. To deliberately cause such offence would be morally reprehensible, to do so unwittingly is to give voice to a disturbing under current in society which still believes there is something wrong with people with disabilities. This is probably the greatest challenge facing people with disabilities, and the broader community. For tackling the problem doesn't require a change in policy priorities, it requires a change in our belief systems.

For me personally, the greatest irony about the Lleyton Hewitt incident is that I do play tennis, and while I'm no Stefan Edberg I'm not that bad a player. I've been playing since I was ten, reached the top section of the local juniors competition, and I must confess I took more than a little satisfaction in beating very arrogant players who because they were playing a 'spastic', thought they had won even before they walked onto the court. Victory was often bitter sweet because sadly, sometimes the people I beat became that much more mean to me about my disability.

Yet when I tried to pursue my interest in tennis at a higher level, I ran into a dead end. I spoke to Tennis Australia to work out what was available and they referred me to the co-ordinator for tennis for people with disabilities. I thought this is great - they're specifically catering for us - only to be informed by the coordinator that there was nothing available because "people with cerebral palsy don't play tennis." I was stunned. "Well thanks very much for letting me know" I thought. "So can you tell me what on earth I've been doing for the past 10 years of my life - playing backgammon!" Furthermore, the person who actually introduced me to tennis was a good friend who also had cerebral palsy. Funnily enough he actually works in a nursery and I am pleased to say he is very smart.

I think all people who have a disability would agree with me, that if the general community can get over their preconceptions and prejudices about people with disabilities and what we can and can't do, then we can get on with the most important thing of all - learning to cope with our disabilities and living a rewarding and valuable life in the broader community - whether we want to be tennis players, gardeners, lawyers, artists, paralympians or whatever our dreams are. For at the end of the day, we are just like everyone else - striving to make the most of our lives, and giving something back to the community where and when we can. It isn't rocket science.

But that brings me to my another topic which is complex and controversial - that of the ever improving technology which enables us to detect disabilities even before we are born. This is a very difficult subject, for which there are no easy answers, but I will say this much. All of us who want to have children want our children to be healthy. That is only natural. But having a child who has a disability is not a disaster. It may be extremely difficult, and be made all the more the difficult by the society that we live in, but it is never a disaster.

And while it must be inspiring to watch your child take their first steps in life, it is also inspiring to watch your child, who for whatever reason might not be able to take those steps, but then see that unmistakable look in their eye which says "stuff it…I'm going to get there anyway."

Finally, I want to re-iterate that I feel honoured to be here today, and to be associated with Scope. It is a great cause, and one close to my heart for obvious reasons. One of my favourite memories was of a night I was training for the National Athletics Championships for People with a Disability down at Westerfold's Park. It was one of those incredibly hot Melbourne summer evenings, and it seemed the only one's out were me and the snakes, and the only ones enjoying themselves were the snakes. I was running along the Yarra as fast as I could, (which wasn't very fast!) when I passed a man walking with his young son, who also had cerebral palsy. The man pointed me out to his son, and when the boy saw that my hand was just like his, he simply beamed. I'm not sure he knew what it meant, and perhaps I don't either, but we both knew it meant something. It's little things like that that can make such a big difference when you have a disability. And the great thing about Scope is that it not only does the hard yards on the important policy and resource questions, it also does the little things day after day, and it's a privilege to be a part of that.
Thanks very much.