What’s Inside?

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I am a great believer in the notion of never judging a book by its cover, partly because I am often on the receiving end of such errors in judgment. Experience has a way of providing a level of insight that goes far beyond any other form of comprehension.

So, who am I anyway? I am soon to be a 59 year old divorced woman, (who feels around 35, maybe 40.) I was born in Corner Brook, Newfoundland, Canada. I have salt & pepper hair, cerebral palsy, and hazel eyes. If I really stretch it, I just make 5′ 2″. I use a power wheelchair for mobility and I am about 135 pounds of total unpredictability. The loves of my life include: my friends and family, music, art, travelling, computers, plants, and of course – writing.

If the previous paragraph has thrown you for a loop, or has you at least slightly baffled – well good. As a matter of fact, I sincerely hope it has. I feel that far too often society automatically views disabilities – any disability – as tragedies. So much time is spent on trying to find “the cure” – all in the aim of creating “perfect” people, while not enough time is spent where it is really needed. But I think it’s high time we refocus. It is time to look at the real wrong concerning disabilities, which is not always – or perhaps not even often – the conditions themselves. Rather, the real handicap lies in people’s perceptions, ignorance, and negative expectations of those with disabilities. It’s time for society to truly start accepting people for who they are and realize that everyone has distinct talents and limitations. And although this has certainly been said numerous times before, I feel it bears repeating since many people continue to hold these misguided perceptions by judging people on the degree of their appearance of normality.

Appearances can be deceiving; I know this is true. Sometimes when people first meet me, they are taken aback. They notice immediately my somewhat less than immaculate coordination and as I speak, they stand there, frozen with the fear of thinking that they will not be able to understand my words. All their logic seems to evaporate as they totally forget that throughout the world there are millions of people with various accents or dialects and people who use common slang in their conversations and my speech impediment is really no different from that.

Then they are further confused by my actual words, which convey my true beliefs and attitudes concerning my physiological fabricate. Sorry folks, the great focus of my life is not to find a cure for my disability. And if there was a cure found for cerebral palsy tomorrow, I would not join the ranks of those who would go as far as to sell their souls in order to be rid of their “problem.” My disability is not a tragedy, nor is it a problem. I believe that we are all packaged as we are for a reason and it is vital to comprehend that our bodily structure must intertwine with our personalities in order to create the whole person. Therefore the fact that I have cerebral palsy is merely a part of my total make up which has helped pattern who I am and the direction that my life has taken. That is why when describing myself earlier, it was braided with my other physical and personal characteristics, and why the term of cerebral palsy itself does not warrant proper capitalization.

Ok. So what is the focus of my life? It is simply my life – and I’m just living it, in the hope of making some sort of valuable contribution to this world. My focus is also to succeed – to aim high. I strive to do things that I feel are morally correct and in my power, in order to achieve my success. From a very young age I was encouraged to seek out opportunities, to make the most of them and to invoke progression. And in retrospect, perhaps I have come a long way.

At age eleven, I left Newfoundland and moved to Ontario. The reason for my transfer was that in the sixties Newfoundland did not offer many opportunities to someone with a disability. Providing accessibility was not a main consideration, nor was ensuring the proper education to those with alternate needs. So, with the invaluable assistance of my brother, Lloyd, who in effect became my legal guardian when I was a minor, I embarked on the beginning of my formal education.

Unfortunately, I was quickly informed that whatever “teaching” I received in my home province was about as valuable as used toilet paper, so I spent the next two and a half years begrudgingly retracing grades one through three and accelerating through grades four and five, while living in an institution for children with physical disabilities.

As I watched other kids make their escape and attend schools outside the walls of our institutional confine, it did not take me long to recognize my desire to have the same fate. I began the process of badgering my social worker – weekly at first, then gradually increasing my torment to the level of continually making her teeter on her breaking point. Furthermore, I demanded her confidence. With great apprehension that my teacher would err on the side of caution and would advise to have me remain in the internal school for another year – then another and another – I demanded that she not be told of my plans to attend a regular school until it was too late for her to stop it. But in the end there was delicious irony. The woman whom I feared would work against me had been working towards the very same result.

That next September I began my daily travels to Sunny View Public School and although it was still a segregated school, I could live with this compromise – while I proved to my doubters that I was indeed capable of handling this level of the outside world. Yes, it was a compromise I could live with, but only for a while. There was also one consolation to this concession. My performance and marks from the previous two and a half years earned me the entitlement to skip grade six and go directly into grade seven.

By the second half of grade seven I was already chattering about moving on. I felt that the challenge offered by this environment was already conquered. I knew I was ready for an integrated school setting, but did anyone else? Unfortunately, my grade seven teacher did not agree with me. On his advisement, I was sentenced to yet another year of a mundane existence in this segregated school, and somehow the fact that he was taking off with his wife and kids to live in Australia seemed to add insult to injury. He was moving on, but I wasn’t.

Surprisingly, my second year at Sunny View turned out to be my most enjoyable year of formal education in grade school. As we entered our classroom on our first day back, our worse nightmares kept flashing before our eyes. We told each other our predictions of what the new teacher would be like. – She’d be ancient, grey and toothless, wrinkled from head to toe. – He’d be three hundred pounds and be unfamiliar with the concept of bathing. – Oh yeah, we were in for a real treat! But as this young handsome guy walked in our classroom, we were all proven very wrong. He introduced himself as our new teacher.

Over the next few weeks, as he got to know us and we got a fix on him, he decided to let each of us work through grade eight at our own pace. This may have been his one big mistake. By mid-November it was abundantly clear to him that all of us would be finished the eighth grade by Christmas. Then what in the devil’s name was he going to do with us? In an unprecedented move he asked his authorities to let him teach us two grade nine subjects – Math and English – even though he was not a high school teacher. The authorities agreed, if he would write an high school teaching certificate test; plus two other conditions which were that our final grade would be based solely on our final exam and we were never to be told of our actual mark on the exams – just whether we passed or failed. We accepted their conditions.
The next June we wrote our grade nine finals, and though I blew my math exam, (totally obliterating it into millions of unrecognizable pieces) I was told (off the record of course) that my English final had many people absolutely flabbergasted. It was rumoured to have been marked in the extremely high nineties, if not 100 per cent. It was said to be the highest score of all the grade nines, including those at my future non-segregated high school, but of course I have no way of confirming it.

The onset of 1978 brought a few significant changes to my life. I was rapidly approaching the cut off age for living in the institution, (which was just fine with me) but where would I go next? Another institution? I prayed not. As it turned out, fate was once again in my favour. I ended up moving from Toronto to a group home in the city of Burlington, Ontario, Canada, where I was one of only two disabled students in a local high school. In one sense I had achieved a level of independence that was satisfying and where many had told me I would never get to, but all was still not quite right in my world. High school had become stagnant with course contents that seemed irrelevant to my career aspirations and instead of feeling good about catching up in my schooling in a relatively short period of time, I felt awkward and out of place because I was still a few years older than my classmates.

Throughout my high school years various people within the educational system kept insisting that I not take a full course load – urging me to leave off one or two subjects each semester. I once calculated, that if I kept plugging along at that rate, I would be around twenty-five by the time my grade twelve graduation rolled by. This was not acceptable to me; it seemed totally inappropriate. “Nobody graduates high school at age twenty-five.” I told myself. So I ended up applying as a “mature student” to a community college in the neighbouring town of Oakville and three years later I graduated from Sheridan’s Human Services Administration Program and began working in that field.

Much has happened since then. Jobs have come and jobs have gone. So have towns – cities – provinces – people – causes – and the likes of it all. Along the way there have been many people who have helped me and encouraged me to obtain my present level of success and I wholeheartedly credit them. However there are also many – many more – who I have succeeded in spite of – and I have no hesitation in identifying their condemnations either. The number of times that I have been told “You’ll never live outside of an institution. You’ll never be gainfully employed. You’ll never get married. You’ll never be . . . ” are far too many to even count. People will often make these comments with the intention of giving someone a “realistic” picture. But the truth is that no one honestly knows what reality will be until it arrives and in cautioning not to expect too much for people with disabilities, I believe that society ends up expecting much too little. Reality can just as easily turn out positive as it can negative. Society tends to look at what can’t be done rather than what can; at what’s wrong rather than what’s right. We are always trying to “fix” things even when they are not really broken. It angers me greatly, that there are some parents who feel that they are helping their disabled child by ending that child’s life, or that some doctors are now advising expectant mothers to succumb to various tests to determine if their unborn child is “without deformities” and if problems are apparent “the proper steps can be taken.” This line of thinking can lead to a life ending prematurely and should be of great concern to society as a whole. Some 59 years ago this line of thinking would have eliminated the possibility of my own existence and with the utmost modesty, I can confidently say that there are at least a few people in the world who would find this notion extremely unsettling.

Well, have I reached my peak of success yet? God, I hope not! But I have reached the point in my life where my long time dream of becoming a respected writer is now being put properly on the front burner. And through my writing, I hope that telling my story can help, influence and affect others.

I believe that words have great power, so whether it will be through my own parable, my poetry, or some other literary genre, I shall pursue – and write what’s inside.