blog

“A Little Less Invisible” by John Francis I’ve got two arms and two legs. They work just fine. At least, at this moment. I have a brain that works overtime, in a good way. At least, at this moment. And inside the workings of my body, the same. All good. At this moment. As far as I know. This situation of course could change. Just like that. As it did for John D, when a tree fell on him, or Jane through falling off a horse. Or Karen, when she was diagnosed with multiple sclerosis. For others, like John R who has non-verbal cerebral palsy, they’ve known no other life, from the moment they were born. I’m involved in this book project as one of the writers assisting with the story-telling. Many of the contributors need no help, and are writing their own stories, completely. Others need a bit of… Read More »John

“From a Mother’s Perspective” by Jacy Arthur I found the book project on Facebook and was keen to join, as my story is all about inclusiveness. I became a mother, and people thought I couldn’t or wouldn’t have a child, due to my disability. Typically, in the past, people with disabilities would be hidden away, and society needs to know all about us. We are living normal lives, just like everyone else. We don’t want sympathy, or to be heroes or to be inspirational.  Just acceptance and understanding. The book project presented a few challenges for me, including working with others and trying to come up with different ideas from different perspectives. I am looking forward to connecting with new readers and hopefully they will be encouraged to read more about my life. I hope that people will better understand answers to the questions “Why do people with disabilities (PWD) want… Read More »Jacy

“Living in Adelaide, South Australia” by Faisal Rusdi My name is Faisal Rusdi, and my life story appears in the ‘My Disabilities’ book project under the leadership of John Duthie and TM. I have Cerebral Palsy causing motor dysfunction, which mainly affects my hands and legs. One of my passions in life is painting, and I am a member of the ‘Association of Mouth and Foot Painting Artists’. It has been nine years happy years since I married Cucu Saidah. She commenced studying at Flinders University in South Australia, and eight months later I left Indonesia to join her. It was a big surprise when John asked me to join the project. At that time, I did not accept his offer as I was busy preparing for a painting exhibition. At the same time, Cucu and I had a tight schedule as we were preparing to go back to our… Read More »Faisal

“Don’t be afraid to ask for help” by Diana von der Borch-Garden I was attracted to helping with the project as I have worked in the disability area for over fifteen years in a variety of roles. My own mother had a hidden disability, epilepsy, which was not well controlled when she was growing up, nor understood. She developed epilepsy when she was fifteen, and it was only really brought under control when she was in her late seventies. Medications were a bit hit and miss, and her life was largely unpredictable when she was younger and when my sister and I were growing up. We used to chat with her neurologist about the effect of some foods on epilepsy, but in those days, there was not much scientific proof that there was a connection between seizures and certain foods. It was tricky trying to get doctors to understand this phenomenon,… Read More »Diana

“Our Journey with James” by Cristina Rodert I came to Australia in 1994 as an overseas student and was studying to receive a PhD at the University of Adelaide in environmental studies. Then I gave birth to James 7 weeks premature in 2000. My life was changed forever. After that, I stayed home and cared for James, and his little sister Hannah, full time for seven years. Later, I gradually entered the workforce. Now my interest shifted to areas of disability, especially how to help and care for people with high needs. I am currently working to help unemployed people find new opportunities. Apart from work, organising James’ care, accommodation and health needs consume most of my time. This is my first attempt to contribute to writing a book, and it is a challenge for me to express myself, coming from a non English-speaking background. I want to share the… Read More »Cristina

“The Power of Stories” by Chantel Bongiovanni There is an unprecedented power in the telling of stories, not just for the listener, but for the teller as well. We tell stories constantly: to others, to ourselves. Our stories change as we change. We as humans can and must tell stories in order to make ourselves understood by others. We yearn to be understood, to make sense of our world and our experiences through time – the only way we can do this is through telling stories. I come from an Applied Linguistics background, specialising in Narrative Analysis. Basically, it means that I study the words people use in the stories they tell. I study why out of all the ways someone could tell a particular story about a particular time and experience in their life, that they chose particular words and particular events in order to tell their story. I am… Read More »Chantal

“Wonderings” by Bee Williamson I suppose I write as a way to clarify ideas and say to others, through my own experience, what it’s like to have a chronic mental illness. I can’t shy away from it. It’s stuck with me. I was inspired to write a story for John Duthie’s project by Maribel Steel, who is inspiring me in her life and her challenge of vision impairment. To write to help others in similar situations is what it’s about. Because of my medications, I find it hard to read novels, but occasionally I do devour memoirs about mental illness. I’ve got quite a collection in my bookcase! Like my work as a peer support worker on SMART, run by Swinburne University, to be able to normalise some things that happen to you when just living your life, is important. You can’t label everything you do in your life. And… Read More »Bee

“You were wrong, but thanks for helping to motivate me” by John Duthie “The tree had caused a head injury, and it didn’t seem to me that John was able to think and function in the same way as he had done before the accident”. This statement was made around 18 months after my accident, and I use it as motivation to achieve things in life. I wanted to prove them wrong. The truth is they had given up on me six months earlier. However, that is a story for my memoir. One achievement was commencing a book project, a compilation of over 25 stories about people with disabilities. I shared the idea with my friend TM, and she was keen to help. Both of us experienced traumatic spinal injuries and spent time at Hampstead Rehabilitation Hospital. The book project jumped into my head as I completed reading my 25th… Read More »John

“Being 24” and “My motivations in joining the project” by Alice Waterman and Emily Woolford Alice I was diagnosed with Enterovirus 71 when I was only two years old. I have no memory of being in a coma, and my family do not like to discuss it, as it was a painful experience for everyone involved.  Taking part in the book project allowed me to understand the impact on my family. I have now accepted my illness, and it has given me the strength to move on. I am now 24 years old, living in Adelaide in supported accommodation at SACARE. In life I enjoy shopping, watching movies, visiting friends and family, and I work twice a week at Blend Creative, a graphic design company. Alex from SACARE let me know about the book project and asked if I would like to participate. One of my goals in life is to… Read More »Alice and Emily