Home to Bentley Park and getting involved in Disability Activism
“How often have I lain beneath rain on a strange roof, thinking of home.”
― William Faulkner
I had always lived on the south side of Cairns. When on occasion I had to travel away from home I usually became depressed after more than a couple days away from home. I found it hard going having become severely disabled and stuck in Brisbane for 9 months. I remember talking to Peter Cominos when he visited me and reflecting on how I have never lived anywhere where I couldn’t wake up in the morning and see the Pyramid. When I finally returned home in the summer August 1992, as the plane landed I was excited about coming home, then we got in a taxi to drive home to Edmonton. As I saw familiar surroundings I could feel the tears running down my face.
For Jenny and I the first three years following our return to Cairns were the hardest of our married life. It was not long until our new house at 45 Malabar Street in Bentley Park was finished and we moved in immediately.
Fights were commonplace. The genesis was normally the same. I would drop something or need something I could not reach and “JENNY’ would come my cry. for help. Any delay would lead to frustration and anger on my part. Further delays often led to uncontrollable rage and frequently resulted in broken glasses and anything I could reach to push on the floor with my paralysed hands. These problems were partly solved by gaining access to attendant care program run by Centacare. My experiences with attendant care were to give me the lifelong impression that the provision of this service is the most essential element to allow people with severe disabilities to lead useful and fulfilling lives.
The period at Malabar Street saw several decisions that would turn things around for me. Firstly, I had the opportunity of reading a book that has no doubt influenced the lives of countless people called, “The Grapes of Wrath” by John Steinbeck. In all my time in hospital and since my return home, I saw little reason for optimism about my future. Other people had low expectations for me, and I could not find disabled role models who had gone on to live the sort of life I had dreamed of before my accident.
The “Grapes of Wrath” was set in the United States during the Great Depression. One passage was to shape my attitude to the hardships confronting me. The passage emerged as the Joad family (a poor family from Oklahoma in dust bowl America) approached unknown hardships. Having lost their farm and had their home repossessed by the bank, the Joad family, like so many others in that time, decided to set out west to California for a better life. On their way they confronted a ragged man from their home town, who had tried life in California and said he was returning home to die. He said to Tom Joad
“Somepin it took me a year to find out. Took two kids dead, took my wife dead to show me. But I can’t tell you. I should of knew that. Nobody couldn’t tell me, neither. I can’t tell ya about them little fellas layin’ in the tent with their bellies puffed out an’ jus’ skin on their bones, an’ shiverin’ an’ whinin’ like pups, an’ me runnin’ aroun’ tryin’ to get work—not for money, not for wages!” he shouted.
Shaken by the comments, as the Joad family headed to California, Tom turned to the Preacher and said, “is that guy telling the truth?” The Preacher replied “the truth for him maybe, the truth for us we’ll see”!
I realised there was no point in worrying about the future or judging my own life by the experiences of others. Jenny and I were different, and so were the times we were living in. Spinal Cord Injury had ruined many peoples lives, but would that be the truth for me? I decided to have a go at everything I wanted to do and see what the truth would be for me.
However, exactly what to do had been my problem since my return from the spinal unit. So many different plans and ideas, but so few of substance. My only experience of any real value had been the small amount of time I had spent at University. Unfortunately, the University was about to re-locate to Smithfield, north of the city. Having been accepted to study at James Cook University we were certainly starting to realise how difficult transport would be living in Bentley Park. It would be too far for me to travel so what would I do? After much thought we decided we would move to Kewarra Beach. It was an unfortunate financial decision, but in every other way it opened up opportunities.
I made a decision that would be the start of a significant progression in my life, as well as Jenny’s and in our marriage. We decided to put Malabar Street on the market and pursue my education. Before long our house was on the market and we had started building a new house at Kewarra Beach. Our House was finished a few weeks before the opening of the University. A fresh start at last!
The best way to find yourself is to lose yourself in the service of others.
– Mahatma Gandhi
It became apparent to me that the only reason I could live independently in the community was because I had Jenny caring for me. I asked myself, “What about other people with disabilities?” It turned out that so many were struggling to cope in inappropriate locations such as living in nursing homes and some remained in institutions for the disabled. It was shocking that people were living like this.
Clearly things were not right, and I was very passionate about people with disabilities being included in the community. I was also frustrated with being denied access to shops and businesses, simply by not able to get in. This was not good enough.
During the 90s, coming home to Bentley Park and getting involved in Disability Activism I became involved with a number of organisations committed to raising awareness of issues relating to people with disabilities. My involvement with these organisations included leading discussions and workshops as well as preparing press releases and engaging in media interviews.
Transport is a crucial issue for people with disabilities, especially for those of us who cannot drive.
A number of people with disabilities had contacted the operators of the local bus service Sunbus, requesting wheelchair access, yet by the middle of the1990’s it remained the case that not one bus in Cairns provided access. A local woman with quadriplegia, Gail Harris and myself contacted the Cairns Community Legal Centre (CCLC) to take an anti-discrimination action against the owner of Sunbus, Transit Australia. At CCLC we found the assistance of a lawyer and disability advocacy champion, Julie Fry. Julie agreed to act for Gail and I against Sunbus.
With Julie’s help, Gail and myself took this matter all the way to a hearing. While we lost the case, I’m convinced it was as a result of our actions and those of other people with disabilities across Australia that new accessible transport standards were adopted. Today in Cairns every bus has wheelchair access.
Prior to 1 July 1997 all government funded accommodation support in the Cairns area had been administered either by church run organisations or by the Endeavour Foundation. Gail Harris and I decided we wanted a local grass-roots provider that gave us agency, consistent with the mantra ‘nothing about us without us’. As a consequence we formed Far North Queensland Independent Living Support Association (FNQILSA) and recruited Julie Fry to be manager. FNQILSA was launched on 8 July 1997. For a few years I served as President of FNQILSA, At FNQILSA I developed extensive knowledge regarding the provision of accommodation support for people with disabilities.
FNQILSA consists of a Management Committee comprised of several people with disabilities, their carers and family members. It represents an exciting initiative in creating a consumer driven organisation, which gives people with disabilities more control over an important part of their life. My role with this organisation has been very satisfying, and provided me with valuable experience.
As the Queensland Network Officer of the Australian Quadriplegic Association (AQA), I developed a thorough understanding of a wide range of services required by people with physical disabilities. AQA is committed to a holistic approach to rehabilitation, which encompasses the emotional, social and vocational rehabilitation of people. The Association promotes a continuing and vigorous campaign of publicity and advocacy focused on the rights, dignity, and independence of the individual. This involves the provision of services ranging from employment assistance, supported accommodation, and public transport requirements. In 1999 I stood for the board of AQA, and became the first Director elected outside of New South Wales.
I became involved with the local independent advocacy organisation Outright Independence through my friendship with local woman and disability advocate Lyn Coyle. As a member of Outright and Queensland Advocacy Incorporated, I developed an understanding of the needs of people with intellectual disabilities, as well as the role of advocacy, and the need to respect the rights of people with intellectual disabilities to chart their own destiny. I also developed an understanding of other important issues such as de-institutionalisation. When a lack of funding caused this organisation to close, many of us got together to ensure people disabilities had an advocacy organisation here in Cairns. This was the genesis of what became known as ‘Rights in Action (RIA)’.
For a couple years I also served on the Physical Disability Council of Queensland and as their Queensland representative of the Physical Disability Council of Australia has involved my participation on a peak body responsible for advancing issues relevant to people with physical disabilities. My portfolio areas were Employment/ Education/Training, Attendant Care/Accommodation /Housing, and Transport.