40 Years of Disability Activism

After acquiring my disability I was in a state of shock and did not know where to go for help. My parents were told to put me into a Home and forget about me as I would never amount to anything; to me this was like waving a red flag at a bull, so I decided to try and make something of my life and prove the authorities wrong.

My first big fight with the authorities was when they decided I was taking up room in the Rehab where other people were more deserving of the rehabilitation. I was considered a waste of time and a strain on the system. When my father heard this he hit the roof and arranged to meet with the Social Worker who told him if he didn’t have me moved out of the hospital by 5pm that coming Friday he would find me sitting on the roadside with my bags and baggage. Although I could not communicate very well at that time I still managed to tell my Rehab Specialist about everything, he was absolutely ropeable and immediately rang the Chief Executive Officer and Social Worker and told them in no uncertain terms that I was occupying one of his beds and I would remain there until he decided when I was ready to move on. This was my first victory against bureaucracies.

I moved out of the rehabilitation hospital and into an Institution, this was a little scary for me. At first I kept to myself, until four of the residents discovered I was an ex- secretary and honed in on my letter writing expertise. I found out they were real Rebel Rousers and in next to no time I became a member of their rebel rousing bandwagon. Our first big fight was to start a Residents Committee, we were told most emphatically, No. Time and time again we were called to the office and told ‘we know what’s best for you’, this made us even angrier and even more determined to fight on, which we did.

Eventually they gave in and granted us permission to form a Committee. After a democratic election conducted by the residents I was elected President and together the rebel rousers and I started our campaign to change the archaic conditions within the Institution.

Our first battle was to have the 8pm curfew abolished. Then we fought to get locks and keys fitted to our wardrobes to try and prevent our possessions from being stolen. Our next fight was for supper, this request went down like a lead balloon. We were given nothing to drink after our evening meal (which incidentally took place at 4:45pm) until 8am the following morning. Their excuse was there would be too many wet beds throughout the night which would cause staff to be run off their feet. It took us about five years to win this battle.

The local Lions Club offered to help us raise money to purchase a vehicle to enable us to go out more. We were told staff would not be allowed to drive it, so we commandeered our friends to help us with our social activities. The hierarchy even went as low as making us pay for our own petrol, but we didn’t care because this gave us more freedom.

Next we formed a Bus Committee and once again I was elected president, this got me into more strife. As always my peers gave me support and we fought hard to achieve our goals. We eventually obtained total control of the bus; it would take eight people in wheelchairs and two ambulant persons, plus a volunteer driver and an assistant. This gave many residents an outing, some of whom have never been out of the Institution in decades. To me this was a real coup.

I managed to win some brownie points by suggesting we residents hold a stall at the annual fete, this idea was welcomed with open arms and the money collected was put into a fund for the residents’ bus outings, believe it or not I was hailed a hero.

There were many other small battles won along the way, but our biggest fight of all was over the use of electric-wheelchairs; one of my peers made a video about this called, ‘Captives of Care’. As I was not able to use an electric-wheelchair I had to be satisfied to sit in the background and make the bullets for my colleagues to fire. This was a long arduous fight in which we had to use everyone and every trick in the book we could. The bureaucrats told us we would run over staff or visitors and injure them, or drive the electric wheelchairs through the glass doors located in the hallway; but not one of us were aware of any glass in the hallway, except for a mirror, which was hanging on the wall. We stuck to our guns and fought like crazy. We even contacted A Current Affairs at Channel Nine who agreed to help us by means of filming a documentary called ‘Captives of Care’ which was filmed at Lane Cove National Park and other locations in the vicinity of the Institution, it was based on the book ‘Captives of Care’ written by John Roarty, one of the rebel Rousers in the institution. Once the documentary was completed it took some time before it went to Air, and it was the ABC Network that eventually agreed to do so. Following the documentary going to Air we were all brought to task over its content and told to find other means of accommodation if we didn’t like the rules of the Institution. We called their bluff and eventually the war of words passed over and we were told there would be a trial of two electric-wheelchairs under strict guidelines and after the residents concerned pass a driving test. In due course electric-wheelchairs became a normal everyday comfort for many residents who could now move from place to place independently.

After leaving the Institution and moving into the community I joined a local Access Committee and lobbied for more accessible public and private buildings in the area, particularly the local church. The wheels of progress turned slowly, but over time evidence of my advocacy became evident. I then turned my sights to helping people with disability and joined many committees and disability related organisations.

As time went by I was asked to nominate for the Board of People with Disability Australia (PWDA), but for many years I hesitated and instead undertook some work for the then Department of Ageing, Disability and Home Care (DADHC), known today as Ageing, Disability & Home Care (ADHC). In my position as Community Advisor on Disability matters I advocated for the human rights of people with physical and intellectual disability. In due course I became a board member for People with Disability Australia Inc and over the years I held various positions, e.g. Director, Treasurer, Secretary, Vice-president and President. I am still very active within the Disability Sector and I will help anyone who requires my assistance regarding disability related issues.

Much of my story can be found throughout the pages of my two publications as well as my third book which I am currently working on. My life as an advocate thus far has been very rewarding, although before acquiring a disability my sights were aimed at a dancing career. Now, in hindsight I think my life has been more rewarding and useful to people who through no fault of their own need advice and guidance to overcome numerous barriers set before them. I believe anything is possible if one has the resilience, courage and determination to pursue their ultimate dreams, aspirations and goals.