The One Hundred Leaders Project

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Following your dream

Shiloh Moore

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.

Bryan Tingey

I was an art teacher whose first job was at Christ Church Grammar school, Perth. I then moved to Adelaide to be with my children and my wife. I managed to get a job at Marbury School, Aldgate. It was while I was here that I noticed that I was slurring some words.I went to the Doctor, who couldn’t give me an answer, so I went to a Hypnotherapist and a speech Pathologist but neither could help me. I was made redundant after one year at Marbury and a reason was never given or sought. I kept searching and was eventually diagnosed with Spastic Ataxia by a neurologist, who told me that as I aged my symptoms would worsen.

FaithThorley 2

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.

Kelly Vincent

I’m proud that I’m a talented writer. I’m proud that I’m a very loving person. I’m proud that I’m capable of seeing the world through eyes which aren’t yet tear-jaded, and that I’m capable of being as objective as possible about my view of the world. I’m proud that everything I do, even though people may or may not agree with me all the time, I do because deep down in my heart I believe that it’s the right thing to do. And I’m proud that I’m capable of following my own dreams and my own path, which is a lot harder to do than following someone else’s dreams for you. I’m proud that I’ve been in politics for a year, and haven’t gone totally mad yet. I guess I’m just proud to be me.

Jacy Arthur

I live with Cerebral Palsy (CP) and a hearing impairment but I am a very good lip reader. I have an 11 year old son, Luke, and a partner, Brad, who also has CP. Brad and I have been together for seven years. My son and I have been living independently in a ‘rental’ Unity House for eight years and Brad moved here from Sydney a year after we moved in. We would like to get a bigger house so my son can have his mates over without taking over the lounge room, as his bedroom is very small. I have put my name down with the Housing Trust and the waiting list is quite long but hopefully our turn will come in time.

Jala Burton

I am 24 years old and have lived with Cerebral Palsy (CP) since complications at birth. The form of Cerebral Palsy I live with, Spastic Quadriplegia, affects the muscle tone and motor coordination in all four of my limbs and core, along with my balance. These physical impairments have meant that navigating through a large majority of everyday living tasks does not come without complications.

Belle

I’m a mother of two 23-year old kids who live with me part-time. The decision to have children was very important to me. Some people were negative about the prospect of me having a baby which made me feel depressed and inadequate as a woman. I knew it would be very hard, but having a baby was a priority for my life.

Phil Herreen

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.

Grace Bowman

Grace grew up with her parents, David and Stephanie, and twin sisters in Moonta on the Yorke Peninsula. She started out as just another young country girl with a dream to have her own pony. Before and after school she would ride her bike to clean out the stables and ride and feed her horse. "All I wanted to do was ride," she says.

Tracy Vandepeer

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.

Simon Wong

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.

Nadia Moffat

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.

Tony Doyle

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.

Neil Ashman

I’m 50 years old and live with partial (also known as incomplete) quadriplegia. I had a boating accident in 1976 at Goolwa and broke my neck. It means I can’t do all the things I dreamed of when I was a kid. I lost the use of both my legs and I have only partial use of my arms. I wasn’t able to fulfill my dream of being a farmer on my parent’s farm at Kapinnie, 100 kilometres from Port Lincoln.

Trevor Harrison

I was born at Port Pirie in 1955. I was11 months old when I was diagnosed with Cerebral Palsy (CP). Before that, I was thought to be a “lazy baby”. My parents had no knowledge of CP, and found it hard to accept there was no cure. They were advised to “Put me into the Home for Incurables and forget about me”. Thank you Mum and Dad for not taking that advice! At different times they took me to a chiropractor, a hypnotherapist and a faith healer, but no miracles!

Jeremy Hawkes

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.

Belinda Owen

When I was a teenager, I was like pretty much every teenager trying to assert my independence. I was a little stubborn and I wanted to do everything my friends were doing. In my small school, music was a big thing, and with a bunch of my friends starting bands, lunch times were spent at practices and weekends at shows.

Sam Cawthorn

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.

Bonnie Millen

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.

John Hughes

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.

Shaun Gallagher

Shaun’s disability occurred due to a lack of oxygen at birth. He experienced some brain damage. Back then doctors and nurses did not describe it as an intellectual disability - they just advised me to put him into an institution. Of course I refused and took him home.

Deana

I live with 5 to 10 per cent vision, which means I see shadows but I don't see detail. I'm married to a supportive husband and we have three kids, the youngest is a girl and the elder two are boys. Our household is male dominated so I try to be a role model for my daughter to show her that females can do things too. I have always been a quietly determined person driven by perseverance and persistence.

Georgia Horgan

Hi, I am Georgia, I have Cerebral Palsy and Epilepsy. Due to this I use an electric wheelchair for my mobility as I can’t walk. I’m currently living with my parents and my sister. Living at home with my sister and parents is terrific. They’ve been an excellent support in everything I’ve decided to do, and everything I do, so it’s good to have them behind me.

Jim Stallard

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.

Flick Hunt

Flick (Felicity): I am a 29 year old woman living independently in the community. I share with a friend living with a disability. I live with cerebral palsy and use a communication device to assist her with communicating and a wheelchair for mobility.

Kiruna Stamell

I am a 33 year old actress living with dwarfism. I am married and live in Birmingham in the United Kingdom, but I was born and raised in Sydney.

Elizabeth Sobecki

My name is Elizabeth Sobecki and I have Relapsing Remitting Multiple Sclerosis (RRMS). I’m 19 years of age, still living at home and I live every moment to its absolute fullest.

Mike Duggan

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.

Elizabeth Neal

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).

Ariella Tairea

My name is Ariella and I am 29 years old. I live with my husband of 3 years and I have a rare form of dwarfism that I was born with called Ellis Van Creveled syndrome. This means I have short arms and legs but my torso is that of an average height person. My husband also has dwarfism but a different type called Achondroplasia.

Amanda Williams

My name is Amanda and I have been living with a disability for the last ten years. I am 46 years old, married and have two daughters. Back in 2001—the 10th of July to be exact—I was feeding two horses, one of which I owned and that is all I can remember of that day. I woke up in hospital four days later, after being on life support with my head heavily bandaged, and was told I had suffered a traumatic brain injury when I was kicked in the head by my own horse and had lost the sight in my right eye.

Michele Thredgold

Hi my name is Michele. I have been totally blind since birth. My condition is called Congenital Microphthalmia—which simply means ‘tiny, tiny eyes’. When I was forming in my mother's womb the eyes, and the motor-works that drive the seeing part of the brain didn't form properly. All those cells just died off and so, seeing is mentally—as well as physically—an alien concept to me.

Damien Conte

Damien loves to paint–he loves everything about it–the colours, the textures, using brushes, fingers, whatever, to create. He gets lost in his work while painting, his focus is dedicated to bringing the creativity from within to the canvas. He also enjoys music and using clay. So we began to seek out the artists that would mentor Damien to develop his skills as a painter and sculptor. Everyone we approached was really keen to facilitate Damien’s journey as an artist and all have shown an unwavering belief in Damien’s abilities.

Star (Anonymous)

Eight years ago I wrote the story of ‘Our Star’ who was then seven years old. As a result of medical mismanagement she had severe Cerebral Palsy but was even then a shining star. I wanted parents to believe in their children. Eight years on, what has changed?

Rachel High

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.