Bentley Park and Disability Advocacy
Bentley Park was the location of my first home as a quadriplegic, after what had seemed an eternity at Princess Alexandra Hospital. The south side of Cairns was where my friends and family lived. Some of us seem to be born with a strong sense of place and commitment to where we live. My ancestors going back generations have been buried in Cairns and I always figured this was my natural destiny as well. Whenever I was forced to be somewhere else I always found myself missing home. Perhaps William Faulkner put it best when he wrote, “How often have I lain beneath rain on a strange roof, thinking of home.
Having always lived on the south side of Cairns it was very depressing to be disabled and stuck in Brisbane for nine months.
Talking to local businessman Peter Cominos when he visited me in hospital, I reflected 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 August 1992, I was full of excitement as the plane landed. Then we got in a taxi to drive home to Edmonton. As I saw so many familiar surroundings from my childhood I could feel tears running down my face.
It was not long until our new house at 45 Malabar Street in Bentley Park was finished and we moved in immediately.
For Jenny and I the first three years following our return to Cairns were the hardest of our married life. Fights were commonplace. The genesis was normally the same. I would drop something or need something I could not reach and “JENNY’ I would yell. Any delay in Jenny coming to help would lead to frustration and anger on my part. Further delays often led to uncontrollable rage and frequently resulted in broken glasses. Anything I could reach with my paralysed hands would be pushed onto the floor .
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 time living in Bentley Park saw several decisions that would turn things around for me. Firstly, I had the opportunity of reading a book that has 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 hometown, who had tried life in California and said he was returning home to die. He said to the protagonist 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”!
This passage put my difficulties into perspective. It also helped me realise that 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 people’s lives. Would that be the truth for us? I decided to have a go at everything I wanted to do and just find out what our truth would be.
Exactly what to do had been my problem since my return from Princess Alexandra Hospital. 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.
We realised how difficult transport would be from Bentley Park. It would be too far for me to travel there several times a day. So what would we do? After much thought we decided to 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 our Bentley Park home on the market and pursue my education. Before long our house was under contract 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!
While living in Bentley Park and Kewarra Beach, 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 emerged that many people with disabilities were living in inappropriate locations such as nursing homes. Worse still, some remained in institutions for the disabled. I was shocked people were living like this. As a result I found a number of outlets to advocate for people with disabilities. This gave me a real sense of purpose. As Mahatma Gandhi once said “The best way to find yourself is to lose yourself in the service of others.”
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 services, simply by not being able to get in. This was not good enough!
As a result of my passion, during the 90s 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. I also developed skill in preparing press releases and engaging in media interviews. These were skills I would later find useful in Queensland politics.
Transport is a crucial issue for people with disabilities, especially for those of us who cannot drive. In the south Cairns suburbs of Edmonton, Bentley Park and Mount Sheridan we were particularly poorly serviced.
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. Sunbus was owned by a lager corporation ‘Transit Australia’ which we felt had access to the resources to modify buses and provide access for all.
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 us against Sunbus.
For me it was about fighting for justice for vulnerable consumers, and standing up to a powerful corporation. With Julie’s help, Gail and myself took this matter all the way to a Queensland Anti-Discrimination Tribunal.
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.
Rights In Action
Through my friendship with local woman and disability advocate Lyn Coyle, I became involved with the Cairns based advocacy organisation Outright Independence. I also joined Queensland Advocacy Incorporated and developed an understanding of the needs of people with intellectual disabilities, as well as the role of advocacy. The focus was firmly on the rights of people with intellectual disabilities to chart their own destiny.
It was good to develop an understanding of important issues like de-institutionalisation. When a lack of funding caused this organisation to close, many of us got together to ensure people with disabilities had an advocacy organisation here in Cairns. This was the genesis of what became known as ‘Rights in Action (RIA)’.
I was appointed as the chair of the FNQ Regional Disability Council by then Minister Warren Pitt. This meant I also became a member of the Disability Council of Queensland (DCQ). I met many great people during my time on our local disability council. Council members became my friends, including Suzy O’Reilly, Doug Robbins, Pat Heraghty, Doreen Mortimer, John O’Brien and Elsie Butler.
People with disabilities, carers and family members frequently have exceptional qualities. Often they are developed by virtue of their difference and the richness and diversity of their life experience. Suzy O’Reilly (now Suzy Jackson) is one such person.
Suzy and her sister Karen were the children of deaf adults (CODA). Their mother Carol O’Reilly authored the book Australian Deaf Story. Throughout her life Suzy has been a powerful advocate for the deaf community. She became an Auslan interpreter at a young age and developed a deep understanding of issues facing the deaf community. Empathy and a sense of social justice have been a driving force behind Suzy’s work.
Doug Robbins was born with the gene Duchenne Muscular Dystrophy. Over his childhood years his parents watched him decline from an able bodied toddler to a wheelchair dependant teenager. They realised he would not live to be an old man.
Doug was a school captain at Smithfield. He was much loved by his fellow students. He came to embrace the arts and has been a creative force in numerous theatrical presentations.
The FNQ Disability Council did a lot of work raising issues affecting people with disabilities in Far North Queensland. Often there are additional difficulties to having a disability as a result of the tyranny of distance and lack of service provision. These were among the issues raised by the community and council members.
AQA and PDC
While in Bentley Park I also took on a voluntary role 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 was committed to a holistic approach to rehabilitation. This encompassed the emotional, social and vocational rehabilitation of people with a disability.
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 after standing for the board of AQA, I became the first Director elected outside of New South Wales. The Australian Quadriplegic Association (AQA) later became Spinal Cord Injuries Australia (SCIA) and has gone from strength to strength.
For two years I also served on the Physical Disability Council of Queensland and as their Queensland representative of the Physical Disability Council of Australia (PDCA). This allowed me to participate on a peak body responsible for advancing issues relevant to people with physical disabilities. My portfolio areas were employment, education, housing and transport.
Being held up as a role model for other people with disabilities was something I found unavoidable. This would continue to be the case as we moved from Bentley Park to Kewarra Beach, so I could further my education with James Cook University.
Independent Living Support Association
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 grassroots 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).
A small but committed group of local people came forward to get FNQILSA up and running. They included David Hurse, Greg Taylor, Dennis Boundy and Sara Dobson.
They joined with Gail, Julie and myself and with the help of a wonderfully supportive woman named Robyn James from Disability Services Queensland we were up and running as a service provider. Julie Fry was appointed to be the first paid staff member and manager.
FNQILSA was officially launched on 8 July 1997. For a few years I served as President of FNQILSA. The core business of FNQILSA was 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 was very satisfying, and provided me with valuable experience. After I departed others came in to assist Gail, such as Gail Ganley, Greg Taylor, Lyn Barnes and Nita Carling, with Neil Luckett appointed CEO.
Today the organisation is known simply as ILSA and remains based in Parramatta Park in Cairns. It has serviced hundreds of people with disabilities and has a multi-million dollar budget. Delivering services under the National Disability Insurance Agency, ILSA is making a substantial contribution to improving the lives of people with disabilities and families in Far North Queensland.
Other Reference Material and Pictures