Hi, I am Melissa. I was involved in a trauma accident in 2003 where I went to board a train, and unfortunately the door closed as I was stepping on, and I fell between the train and the platform. So the train kept going. I’m very lucky to be alive.
I was born in Adelaide in 1962 to two immigrants from Italy. In the mid-70s, at the age of 12, I had a subarachnoid brain haemorrhage. The cause of the haemorrhage - an arterial-venous malformation (aneurysm) - meant I had a bleak prognosis. I experienced the pros and cons of the public health system and am only here today to tell the story because of my devoted parents and the amazing medical staff at the Adelaide Children's Hospital.
I was originally born in Vietnam, and I came to Australia at the age of 13 with my family; my parents, one younger sister and two younger brothers. I guess my parents had no choice at the time. It was a matter of survival. After the Communists took over Saigon in April 1975 when I was 9 years of age, my late father had to close his import/export business immediately. Our livelihood was at risk; my father was in real danger of being seen as a “capitalist” by the new regime. At that time, the most common punishment for former business people regardless of the size of the business they had was total possession of their assets including their living quarters, by the State, and indefinite imprisonment with hard labour.
I first showed strange symptoms of severe, constant migratory pain, weakness and loss of energy, and other symptoms of multisystem dysfunction at age 10. It took four years to be diagnosed with Myalgic Encephalomyelitis (ME) (previously called Chronic Fatigue Syndrome) and Fibromyalgia Syndrome. By then I’d had to pull out of beloved activities including flute, hockey and debating, then school too. I had to cut off my beautiful long hair as it gave me intense headaches and back pain. It felt like I was losing my self completely to the illness.
I am an artist with my own gallery. I live in Auburn in the Clare Valley with my husband, my two sons who are 11 and 20, and my daughter who is 21 and gave birth to our first grandchild in January. I really love it here. I feel I have come full circle and often say to my husband “I’ll be quite happy to stay here now.” As I child I had wonderful experiences travelling around Australia. When I was nine years old I moved to Lae in Papua New Guinea with my parents and twin sister. My other siblings were in their late teens at the time and stayed in Australia. I came back to Australia when I was 18. Living in PNG gave me a real respect for indigenous culture. It was a unique upbringing and I am still close to many friends who I went to school with there. It’s a network of friendship that has gone on beyond the years.
I tend not to talk about my disability first, because my disability is secondary in my life. I have Multiple Sclerosis (MS) which I was diagnosed with in 1986. One of the first symptoms I noticed was that I was losing feeling in my fingertips. I just started tripping over my feet a little bit at first, and it was that which got me thinking and made me go to a doctor. It sort of all went hand-in-hand. My condition has slowly deteriorated since then and I’m now confined to an electric chair all day. I can do very little with my hands anymore, which is a little bit disappointing because I used to be a qualified mechanic.
The accident happened on the 13th of May 2008. I was on my way out to my girlfriend Jen’s house at Myponga. She had needed urgent major surgery and I was spending every night at her house helping her out. We were committed to each other and just hit it off. On the way out to her place one night a kangaroo jumped in front of my car and apparently I hit it. I was driving my Mitsubishi twin-cab four wheel drive that had a bull-bar on it. Because of the size of the kangaroo, it went under my car. My car was bouncing a bit and the front wheels turned to the right, and when it hit the road again, it shot me across the road and that’s when I hit the oncoming Ford. The lady in the Ford died.
I'm 33 and live with Quadriplegia. I broke my neck diving into a shallow pool 21 years ago and this year I’m celebrating my 21st anniversary of living with a disability. I have some impaired function in my arms and hands, and I use a manual wheelchair - I can get around on flat ground but as soon as there’s any incline I have difficulties. On one hand I can’t use anything other than the thumb and a little bit of one of my fingers. But on the other hand I can wiggle all my fingers, although they are impaired. I can’t straighten both my arms because it was an incomplete injury. I am very lucky that I can move my trunk and back, and I can feel everything.
My interest in Speedway started way back in 1962 and spanned some 30 years. In 1992, I finally achieved my goal of winning the National Speedcar Championship and decided to retire from racing at the end of the 1993 season. On April 2 1993, during the last race of the season – the State Speedcar Championship – I was involved in a crash and my car was catapulted over a five metre safety fence. I didn’t realise at the time that I was outside the race circuit in the spectator area. I thought I was hanging on the safety fence because I could see members of the crash crew and paramedics below me.
I’m a visual artist and have had a passion for art all of my life. I’m also a ‘life-long learner’ and have combined my love of making art with being an educator. I’ve always had a passion for making art but didn’t appreciate how important it was in my life until I was in the ICU (Intensive Care Unit) of a hospital in Adelaide following brain tumour surgery in 1990.
I was born into a working-class family in Manchester, England in 1948, and we migrated to Australia when I was 16 years old. My parents were from Ireland. My Father died 10 years ago and my Mother is 96 years old not out. My Dad had a pretty hard life. He was born into an “Irish tinker” way of life; he only ever had contact with one family member, his Mother. He was later shot and wounded in the Second World War. He liked a drink or two and smoked all his life, but managed to live to 88 years of age. My mother’s earliest employment was as a nurse-maid. At 96 she is still better than me at crosswords.
As a young teenager I was diagnosed with an auto-immune disease. It came on very suddenly and I went from being outgoing, confident and highly social to spending the majority of my time at home in bed. This happened almost overnight. The nature of my disability is invisible which creates some unique challenges. Nobody can look inside me to see that I have this disease. There are some physical cues but they are very subtle and won't be picked up by anybody who doesn't know me well.
I am 28 years old. I live with my partner Richard and my three children, Ryan, Caitlin and Lucas. We also have two cats and a rabbit. Ryan, my son, lives with hearing impairment, as do I. We have a syndrome called Enlarged Vestibular Aqueduct Syndrome (abnormal fluid in the ear). We each wear a cochlear implant in our left ear and a hearing aid in our right. I received my diagnosis when I was at Kindergarten and Ryan’s was spotted at birth – he started speech therapy straight away. Ryan began school this year. He is a mainstream student and has settled in beautifully.
In 2004 I was diagnosed with a severe form of Multiple Sclerosis (MS). I was left with no choice but to leave my adopted hometown of Melbourne - along with my friends, my sister, ex-husband and step children - to return to my original hometown of Adelaide. This was an emotionally distressing process which was sadly compounded by the passing of my dog shortly after. He was my last remaining link with Melbourne.
Sam was 26 years old when his life changed forever. He experienced a devastating motor-vehicle accident which left him in a coma and with many traumatic injuries including an amputated right arm and impaired right leg. This was in addition to a range of internal injuries which continued to threaten his life. Doctors did not give Sam very promising the future, telling him that he would never walk. This story is not uncommon. People have accidents and receive traumatic injuries everyday with the result of permanent disability.
Work has always been important to me. I saw that work was a quite defining in society. I believe it defines whether or not people have respect for you and respect for your abilities or whether they tend to see you as being a burden and so I’ve always ensured that I have been a person who was contributing to the community as a whole.
I undertook a visual arts degree in northern New South Wales. According to my mother I have always been an artist, even as a small child. I worked in community arts with people living with disability and moved down to Melbourne to work with children and various groups doing art.
I am 44 years old. I have been married for almost 20 years. I am the Managing Director of a company and the author of an internationally acclaimed book. I also have a diagnosis of Asperger Syndrome which I received when I was 37 years young. The company I manage is Autism STAR Pty Ltd, where STAR stands for Spectrum, Training, Advocacy and Recruitment. My business website can be found at:
I’m 19 years old, living with my parents and studying at university. I was diagnosed with an Auditory Processing Disorder (APD) when I was twelve years old, after being misdiagnosed with Attention Deficit Disorder (ADD) at the age of six. I was told it’s like supersonic hearing - I can hear everything around me. This makes it extremely difficult for me to discern certain sounds or focus on one particular voice. I’m bombarded with noise at all times.
I’m a 32 year old woman living with Spina Bifida (SB). I am currently employed with Spinal Cord Injuries Australia as a Co-Facilitator of a Self Empowerment Program (and I love it!). I have lived on my own, independently, since September 2006. I receive personal care support but manage everything else myself.
My name is Danyele and I was diagnosed with Asperger’s Syndrome (AS or Autistic Spectrum Condition) in 2007 when I was 26 years old. Before my diagnosis I consistently experienced misunderstanding and isolation. My life has not been easy or pleasant and in many ways, even after my diagnosis which altered my life, it is a struggle.
John: I have mild Cerebral Palsy, affecting my coordination, my speech and the pace of my walking. I live in the Barossa Valley, South Australia. I’m a self–employed winemaker and have my own wine label called Reislingfreak. With the winemaking, I focus on Riesling, which is a white wine. I harvest the grapes and keep the wine in bottles within four or five months. So in that period of time, I’m intensely in the winery and looking over the wine. Outside of that period I am busy with other projects.
Twenty years ago I had three finger joints replaced because of osteoarthritis pain. I was working part-time as a hairdresser and my medical specialist told me I could go back to work when I wanted. He also told me he considered me to have a 75 per cent disability which meant I could go on a disability support pension. I was furious and said “never”. I could hardly believe he had said that to me. Me disabled? Though I had to re-learn how to cut hair because of how you hold the scissors, I continued to work for another 10 years. It was the rest of my body that gave up, not my fingers.
Maurice was born at Tantanoola, in south-east South Australia, in 1958. At age 18 he was working as an apprentice fitter and turner in Mt Gambier, but all that changed when Maurice had a vehicle accident. He was travelling back from a BBQ just outside of Mount Gambier on a narrow road and had to move to the side to allow an oncoming car to pass but in doing so, started sliding on loose gravel, over-corrected and ended up swiping that car. A small suitcase on the back seat of the car was catapulted across the back seat striking Maurice on the back of the neck causing a C5/6 lesion which left him with quadriplegia. He sustained no other injuries.
Darryl was born in Adelaide, South Australia, and for the first few years of his life he was cared for in the Kate Cox Babies Home. Then he was whisked off to live in what used to be the accommodation section at the Spastic Centre of South Australia. He lived there until the age of five when a group of his peers who were considered intelligent enough to go school were moved to the newly built Regency Park Centre. Darryl said “I had the normal up and downs of growing ups and I was fortunate to have people working with me who were mostly supportive and did their best to make it a home.”
I was born in Adelaide South Australia in 1952 and was adopted soon after birth. I was born with low vision, undiagnosed until I was five. Until I was 29 years old I used no mobility aids. I blinked a lot more than most people, because my eyes were super sensitive to glare and were trying to shut out the light. This was the only constant indication of having an impairment and only in conditions of bright light.
Susan and Alex live in a comfortable house in Windsor Gardens. Susan and Alex are married and demonstrate a positive view of their future. Our disability doesn’t hold us back a lot. If we didn’t have each other, I think it would be a different world… a very isolated world. Susan lives with Multiple Sclerosis (MS) and reports that she can’t walk very far and no longer works; she lives with MS related psychiatric disability and has physical disabilities. Alex lives with incomplete paraplegia. Alex was shot in the back with a 22 calibre rifle in 1959 by his schoolmate. They were out rabbit shooting.
I am a woman who lives with Downs Syndrome. I was born in London in 1977 and came to Australia when I was a year old. I lived in Port Augusta for 28 years where I went to mainstream schools. The schools I went to were excellent—very good—and I was a member of the Student Council in High School.
I was born in 1973 the oldest of three children. My parents built their home in the Adelaide Hills. I was born with Myoclonus Dystonia Syndrome and Autism Spectrum Disorder. The myoclonus was obvious from a very early age and as I grew I had difficulties in school with socialisation and anxiety.
Jim Stallard had a devastating fall which resulted in him sustaining C6 quadriplegia. It was the beginning of a marathon of medical and surgical procedures, and intensive rehabilitation.
I think sometimes people are pushed into leadership, because that is what happened to me. I was brought up in a small country town in South Australia and lived a fairly ordinary life until I was 14 when I was sent to the Somerton Crippled Children's Home in Adelaide for three months of intensive physio.
I am Liesa and I’m 30 years old and married to Ashley. We live in a unit down at Glenelg East, and I have what’s called a dystonic tremor. I was born with an umbilical cord wrapped around my neck, and so therefore I had a lack of oxygen at birth.
I am 41 years of age and I’ve had multiple sclerosis (MS) for 17 years. I live at Kangaroo Ground in Victoria, which is a north-eastern suburb of Melbourne. I live with my husband, Peter and two girls; Terissa who is 15, and Andrea who is 11 years of age.
This story attempts share with you how we have assisted our loved son and brother to create a place of his own. This has been carried out against a backdrop of having to undo other institutionalised forms of living. For Matthew, these were a medium sized hostel for children and young people and then a number of group homes. The themes of this story are about how environments can disable (or enable) people, and about the process of change for a family and about liberation.
I was as ship unloader operating the crane on the Alcoa wharf. As a result my work in the potrooms, I contracted industrial asthma. An acute asthma attack in July 1985 resulted in anoxia, causing acquired brain damage (ABI) and Action Myoclonus. This resulted in hospitalisation for 18 months and a significant loss of speech and mobility.
In 1987 (aged 20) I had a water skiing accident and suffered a spinal cord injury that left me a C5/6 quadriplegic. I am passionate about improving the lives of people with a disability. I have spoken at conferences and Rotary clubs about my experiences.
My name is Carolyn Cordon. About a year ago, in fact in late February last year (2010), I had a bit of a collapse, and eventually the doctors decided what I had was Multiple Sclerosis (MS).
John’s story is about his life with a congenital physical disability. He has never let his disability stand in the way of his goals. It was his strong desire to lead an independent life and his willingness to take risks in life that directed him to try new ways of getting support and make his own life choices.
Hi, I am Elizabeth. I was born in Bourke, New South Wales (NSW). I live in Tasmania at the moment (although not for much longer) but I don’t fall into the Tasmanian demographic of having been more likely to develop MS (multiple sclerosis).
Right now I am involved in advocacy for people ageing with long-term disabilities. I live in my own unit and need assistance from carers three times a day. They are rostered by me but each one is hired and paid by one of three service providers. After retiring from paid work I took up post-graduate study into disability advocacy and then into the experiences of people ageing with long-term physical impairments. My careful diet, swimming, helpful carers and fun with family and friends all keep me healthy.
For many people with disabilities, there are barriers to them finding who they really are. Personhood is often denied to people with disabilities because other people have control over us. If we rely on other people, we learn to become subservient. Or some people become quite loud. Yet personhood is tied up in our humanity. And that humanity, for me, involves a spiritual dimension. This is the story of my search for my personhood.
I’m Jesse Frick, I’m 23. I was diagnosed with MS (Multiple Sclerosis) nearly five-and-a-half years ago. It was about two weeks after I had turned 18 and about four weeks before I started my final exams. So it wasn’t really the best timing, really.
My name Nick Schumi, I’m twenty-five years old, I’m a Leo. I’m just a regular guy. I also happen to be born with Cerebral Palsy (CP). The kind of CP I have is called Cerebral Palsy Spastic Diplegia, which basically means the lower half of the body is mostly affected.
My name is Tim, I am sixty-one years old and I have mild Multiple Sclerosis (MS). I was first aware of it in 1996. That’s when I was officially diagnosed with it. But I suspect I’ve had it at least since 1991.