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By Sue Egan,
Physical Disability Council of Australia.
At the end of 2002 I was reminded of the significance of this year for the disability sector throughout the world, because this year it is 21 years since the United Nations International Year of Disabled Persons (or IYDP as it became known) was held.
1981 was the year that a call went out to people with disabilities throughout the world to come from behind their oppression and barriers. It was the year where those who experienced discrimination, ignorance, bullying or abuse or those who simply wanted to find their place in the world, declared that things had to change.
From that time on people with disabilities have made it known that they want to find their place in the world alongside other citizens of the world. People with disabilities in Australia were no exception and made it known that they wanted to be included in society in the same way as other Australians are included, no more and no less. But let me go back a little way to talk about how I became involved ...
At 2, I was a bright and happy child I'm told. I was independent, and I learnt quickly. I was the second daughter of post war parents and we lived in Parkes in central NSW, having moved away from Sydney where Polio was rampant at the time. Despite this protection, I contracted polio at the age of 20 months and for the next 3 ½ years lived in various hospitals in Sydney returning home at the age of 5 in time to go to school.
One of the great problems for small children who spend long periods in hospital or institution away from the family environment is that they fail to develop a 'real' image of themselves. If you think about it, there are few mirrors in hospitals, especially available to children, so actual visions of oneself are limited. Also, there are few real role models, as most of the people a child in hospital interacts with on a daily level are medical professionals and this adds to the confusion the child grows up with.
Parents and medical staff spend a great deal of their time encouraging the child to get well and therefore stay away from the reality of the long term disability. This then, was the case for me. I did not realise I had a disability, there were no barriers for me and I believed I could do what any other child did whenever I wanted to. This was my earliest approach to life.
I hated school from the day I started. I didn't understand why I came out of hospital leaving everyone I knew to go to a special school that was different from my sister's school and where all the kids walked with crutches or used wheelchairs. Most of the children I had known until then were in bed in hospital and to a small child appeared totally normal. These kids all had something wrong with them in my eyes and when I left this school 5 years later it was with great relief and no long term friendships.
I was then installed in a state Primary School and was treated as an oddity by the other children who were either afraid of me, or taunted me, or both. It seemed to me that this school had never seen a child with callipers and crutches before!
I was quite ordinary at school, not amounting to much beyond School Certificate English, and in fact few had thought I would go that far (after all I did have a disability, or handicap as it was called then.) I eventually left school at age 16 and attended a Secretarial College for a year.
Around this time, my parents began hassling me to register for an Invalid Pension with Social Security. This to my mind was a waste of time as I fully intended to get a job. After all I believed I was the same as other girls my age who were working and enjoying life and I intended to do the same. However toward the end of my College year, my parents informed me that they had made an appointment for me to be assessed for a pension and fully expected me to go to the appointment and eventually receive a Pension as income.
Although angry and disappointed at my parent's low expectation, I kept the appointment at DSS in Sydney. But before I went home I called in to CES and registered for employment. I was immediately given 3 referral appointments that afternoon and before the day was out had attended 2 interviews and I had my first job.
My parents were horrified. My mother didn't believe that I would be able to cope or to keep up with people my age and she saw it as irresponsible on my part and said that she thought it was doomed to fail. The truth of it is that I was probably a terrible employee but most of us are at 16!
Quite soon after I started my first job, our family doctor called my parents to speak with them about my visit to DSS. It was a very sombre mother and father who spoke to me that night and informed me that the Dr had told them I would never be able to have children. This was based on the information that had been gained from the Department of Social Security during the medical assessment process including very personal questions about whether I had had sex (no boyfriend at the time) and queries on whether I knew how babies were conceived!
The basis of this conversation was that our GP had received a letter from DSS and between them had made this decision without ever having examined me! Therefore, with all the carefree attitudes of the late 60's by the time I was 19 I had a boyfriend and was pregnant! Of course I had no idea I was pregnant, it was not in my life script, and I was 5 months pregnant when my mother commented that I had put on quite a bit of weight. A trip to the Doctor and all was revealed!
Around this time my boyfriend decided to make it clear that he had not bargained for children. And so began my journey toward motherhood and single parenting.
My trips to the hospital were full of assumptions that this baby, would and should be adopted out, that is, if it were to survive birth, and given the assumptions that were around at the time it was thought that a) the baby would not survive the birth, and b) if it did I would certainly not be able to look after it and c) it would probably have something wrong with it.
Four months later I produced a wonderfully healthy baby boy, without a single problem, who from the moment I set eyes on him was mine and no one on earth was taking him away from me. Some years later, I married and produced another 2 beautiful babies, both daughters.
When my children grew toward school age we moved to New Zealand where my husband came from. I began working again, we moved into our own home and life was quite ordinary. All that changed in one short morning!
It was April 1981 and I decided to take the day off work to do some long needed cleaning. That day I fell off a ladder. The accident was not serious, but resulted in a few badly broken bones, resulting in 12 months hospitalisation, no longer able to walk and using a wheelchair for the rest of my life. I was devastated. Suddenly I was confronted with a disability of a different kind and there was no escaping reality this time. I became a person with a disability for the first time.
So what happened to me that made me embrace disability to become the person I am today?
As I mentioned earlier, 1981 was the year of the 'coming out' of people with disabilities in New Zealand. It was the same the world over. For some years prior to 1981, I had been working toward becoming a committed feminist, adopting Feminism as a tool of empowerment, and this assisted me in realigning my rage and finding the strength that I carried around within me.
It was during this time in Christchurch that I was arrested for protesting with a group of women against pornography on T shirts, only to be sent home and to have the case dismissed because I could neither get into the courtroom or a gaol. I think the magistrate thought I had 'lost my way' and he was embarrassed by the whole thing.
Rather than being relieved, it made me furious. I could not put forward my side of the story because of discrimination against me! I would not be able to hold on to the protest with my peers because I couldn't get into the court! I felt an enormous sense of injustice, which fuelled my rage further! The sheer frustration of this new disability, with issues around lack of access, no transport, little information, no awareness and a great deal of discrimination, meant that I raged and reasoned my way through these issues.
I began to drive again after having hand controls fitted, and learnt to drag my wheelchair into the car with me, despite the OT that had told me it was impossible. I went back to work and set about educating my son and daughters to question what was dished out and that they had choices in life and should use them to their advantage.
I returned to Australia in 1989 after my marriage had broken down in 1984. I had already commenced University in NZ and had been working in the disability sector since 1982. On my return, I started working in the disability sector in Brisbane and later completed a degree in Community Welfare.
So how did I come to be perceived as a Leader in the area of disability, and what does that actually mean? In order to understand Leader and leadership better, I examined the word leader to find some meaning to the subject.
The dictionary definition presents a leader as - a guide, a boss, a king. I am none of these, I don't want to boss people around, I am definitely not a king (although the income would be nice) and a guide is someone who knows the way already, and that is definitely not me, because I am still looking for answers for me, let alone anyone else.
So I tried Leadership. Leadership in the dictionary means authority, control, superiority or supremacy and I don't want to be any of these either, for they set me apart from my peers. Unable to find a meaning that I am comfortable with, I set about looking for well known people in the community that I admire, both past and present and asked the question 'Are these people perceived to be leaders and if so, what has made them a leader?'
One person is Nelson Mandela, the former leader of South Africa. Nelson was gaoled for his beliefs and his commitment to end apartheid in South Africa and was a political prisoner for 28 years in his own country because of these beliefs. I admire Nelson for his ability to hold on to his philosophy and not give up or give in despite the conflict and struggle that surrounded him and his family. He was able to look at the bigger picture over a long period and hold out for the change that needed to happen.
From the dock during his trial Mandela is quoted as saying:
"I have fought against white domination, and I have fought against black domination. I have cherished the ideal of a democratic and free society in which all persons live together in harmony and with equal opportunities. It is an ideal which I hope to live for and to achieve. But if needs be, it is an ideal for which I am prepared to die"
So I needed to learn how to look at the big picture.
I also admired Mahatma Gandhi for his conviction and creed of passive resistance against injustice and beliefs that peaceful solutions were the way forward. He set examples to the people of India by living a simple life in the long struggle for independence from Britain. He never wavered in his unshakeable belief in nonviolent protest and religious tolerance thereby leading by example, rather than living in the opulence that could have been his, given the position he held. Gandhi died at the hands of an assassin while maintaining the lifestyle that he set for himself.
A quote I particularly like from Gandhi is:
"Non violence is the greatest force at the disposal of mankind. It is mightier than the mightiest weapon of destruction devised by the ingenuity of man."
I needed to learn to live by example - in other words practice what I preach!
I admired Eleanor Roosevelt, wife of a former United States President, for upholding her beliefs in the value of women in times when men were the dominant force throughout the world. Eleanor Roosevelt stood beside her husband the President, but never lost sight of who she was, of her own self worth and her value as a woman in a world of men. Eleanor Roosevelt left many messages to the women of the world, which would be taken up to form a new wave of the feminist movement in the United States. Eleanor worked with the United Nations to help found UNICEF and establish the Universal Declaration of Human Rights. Later, she was chairman of the Human Rights Commission and, was asked to serve as a delegate to the first meeting of the General Assembly of the United Nations.
This means that I should never lose sight of who I am amid a world of confusion and discrimination.
Being a devoted music lover, I also admire John Lennon, who came from a background of simplicity in post war England. He rose to fame as one of the Beatles, but never lost sight of the struggles faced by many. This is born out by many of the songs he wrote after life as one of the Beatles, such as 'Imagine', 'Mind Games', 'Power to the People' 'Give Peace a Chance' 'Working Class Heroes' to name a few. These songs were Lennons' attempt at waking people up to the prejudices in our world. Lennon also loved and married Yoko Ono, the subject of much criticism over time, but never wavered in his devotion to her.
I needed to embrace what I believe in and not bow to the pressure of others.
I still admire Germaine Greer, who despite a chequered career has maintained her position fighting for and upholding the possibilities and the rights of women throughout the world. One of my favourite quotes of hers is:
"... if a woman never lets herself go, how will she ever know how far she might have got? If she never takes off her high-heeled shoes, how will she ever know how far she could walk or how fast she could run?"
What I learnt from Germaine Greer was how to celebrate being a woman, and that being a woman was a gift, not a sentence.
In more recent times I have come to admire Eva Cox, known as the Feisty Feminist. Eva was born into a comfortable, middle-class Jewish family in Vienna in 1938. The following year her family was shattered by war. Her mother Ruth, a final-year medical student, took her to England where she spent the war, first cleaning the homes of anyone who would give them shelter, then teaching.
Her father, Richard, joined the British Army in Palestine, and her grandparents and other relatives took refuge in Sydney. Reunited in Rome after the war, where her father worked for the United Nations Refugee Association, Eva continued her schooling until her parents joined her mother's extended family in Sydney in 1948.
Eva's ABC Boyer Lectures in 1995, entitled A Truly Civil Society, and established her credentials as a leading contemporary thinker, forcefully challenging current social values and arguing that social capital is more important than financial capital. The following year her book, Leading Women, addressed the problems women face in exercising power. Both works are products of her determination to make organisations more ethical. Eva says:
"I believe we are responsible for each other, as well as ourselves. I act for others so I can live with myself. This position runs counter to some of the prattling on about the politics of difference by postmodernists who seem to deny that we can identify injustice, or that we can act to prevent it. I believe it is up to us, all of us, to make up our minds about the world we want and to take some responsibility to make this world happen."
What I learnt from Eva, was that we all have a responsibility for each other.
Here at last here was someone who shared my beliefs in the capacity of others and who states clearly that we all have a duty to each other, otherwise how else do we survive in this impersonal world.
Of course, these are not the only people I admire, there are many, but none of them are my leaders, nor do they aspire to be so. So, you might ask 'do I look to anyone as a leader?' The simple answer is no, I don't.
However, I would like to explore what other people believe makes a leader?
In 1997 Women With Disabilities Australia held a Leadership Workshop in Adelaide, which informs us that participants believed that leadership qualities include:
And the Practice of leadership includes:
Whilst at the same time, Leadership skills include:
So far we have learnt that qualities, practice (as in putting into practice) and skills, all form some part of leadership. But this doesn't tell us what inspires people to become leaders. What is it that drives people to act in these roles?
What is common to Mandela, Greer, Roosevelt, Lennon, Gandhi, Cox and others is their passion, their beliefs and commitment that come from the heart. The belief in knowing that a system is wrong and must change. The passion in working toward that change and knowing that each step can and will make a difference. The commitment to never give up. The ability to see the big picture and not get bogged down on the day to day issues. These cannot be taught or given out like a wrapped gift.
So, if I am a leader, it is not because someone has presented this ability to me, because no one person can give me what I need to be me. What I do believe is that to be a leader I need a lot of influences, experiences, information, education, beliefs, thoughts, commitment, etc. I also need to understand that the only person I should ever lead is myself and by finding my own way and place in the world I can share these experiences with others.
Each one of us has the capacity and skills within ourselves to be a leader. But to be a leader you must believe in and lead yourself first. In finding yourself you find a way forward. The place I live in is a place of belief and commitment, that every little thing I do will make a difference in the bigger picture. It's like creating a jigsaw with each piece going toward the picture of life that you want to create. This picture is contributed to by many and is never done alone.
Here I would like to add some words from Patricia Neal an actress who experienced a severe stroke resulting in the inability to speak for a long time, and who for years struggled to return to acting. Patricia finally made a comeback to acting and won an Academy Award for the effort in portraying herself. Patricia was also the wife of Roald Dahl the master storyteller who bullied her through the process, but who believed in her more than herself.
She said of her rehabilitation:
"A master can tell you what he expects of you. A teacher, though, awakens your own expectations."
In conclusion I hope that by sharing my story will give some encouragement to others to find and continue along their own pathways and share their own stories so that others can learn and take up the debate of people with disabilities.
One last quote that is my all time favourite:
"Do, or do not. There is no 'try'." Yoda From ('The Empire Strikes Back').
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