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.
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.
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.
Laurence is 24 years old and lives with athetoid Cerebral Palsy. He lives in the Adelaide Hills with his parents, his sister Ella and his dog Tye. Laurence attends university on a limited basis through a mentoring partnership. Ingrid, Laurence’s mother says that Laurence is part of the ‘Up The Hill’ project, which means he has a mentor to take him to one topic a semester, and he can stay in the program for three years. He’ll get a certificate at the end of it. It’s called an ‘audited topic’, and so it’s optional to put in written work for assessment. He’s able to take part in tutorials, seminars and attend lectures. When asked about his experience of the program, Laurence says, “It is good. I meet people.”
I was born in Adelaide in the Queen Victoria Hospital. I was born premature and I had a universal brain haemorrhage at birth and a blockage during birth. All those things came together and is why I believe I have Cerebal Palsy (CP). When I was 15 months old I was in hospital for 8 weeks and had problems feeding because I was premature. It took my mum an hour to feed me. So it would basically take the whole day to feed me because of my poor sucking reflex. I wasn’t sleeping and there were several signs over 14 – 15 months that I had CP.
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.
I love my life and I try my hardest to live as normal a life as I can. I have been in hospital many times for chest infections which I get because my muscles are weak, but I always get better. When I get sad, my Mum plays my ukulele to me which cheers me up and makes me happy again.
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.
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.
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.
On Eagle’s Wings I was adopted at birth into a loving home and later diagnosed with osteopetrosis, also known as marble bone disease. My adopted mother was told I would never have a 'normal' life, go to school or play with other kids as there was a high risk of me breaking bones. You may be reading thinking "everyone breaks bones in their life, its no big deal" but for me there are so many complications because my bones do not heal by themselves and are extremely difficult to operate on. When I need to have surgery to fix my bones there is a high risk of infection and because of the thickening of my bone cavity. I also have little bone marrow capacity which leads to chronic anaemia.
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.
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 a 38 year old woman who was born with Cerebral Palsy (CP). I have lived independently since I was 21 years old. I have a small dog named Jess who was rescued by the RSPCA. She has a lovely nature and is my best friend and companion. Jess is great to have around when I fall. She will sit with me until someone comes. She is also good entertainment. When my carers cook my dinner, Jess starts barking at us to say "Well I'm here too. Where is my food?”
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.
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.
I’ve had MS since 1990. I’ve now got secondary progressive MS. I'm separated and have two adult children - a 27 year old daughter and a 24 year old son. My son lives at home with me. I live at Hope Valley and in many ways the house I live in is not really the best place for me now and it won’t be in the next couple of years. We will be selling it.
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.
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.
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.
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.
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 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!
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.
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.
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 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.
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.
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.”
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?
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.
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).
I have high functioning autism. It’s a developmental disability, on the scale of being mild to moderate, and I was first diagnosed at age 3. There’s been a lot of obstacles and barriers I have had to overcome or navigate over throughout my life, but it’s affected me the most during my adolescence, when I had to be socialising and forming friendships. I’ve had a lot of hits and misses over the years and there’s been a lot of inconvenience—like distance—and the challenge of trying to keep the lines of communication open, because with the way I talk it’s hard for some people to understand what I’m actually saying. When I was younger it hurt a lot, but I know that’s what it’s like for a lot of people, with their personalities and their egos, and you can’t overcome that.
I live in Adelaide with my partner and two cats. I have lived alongside MS for 20 years. I have a part-time job in the disability sector as a research officer. Mine is no extraordinary story. I think I have done what many people do; that is, go after the desire to live a good life.
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.
This story is told respectfully from my viewpoint as a mother; it is Warren who lives his life, walking a road with obstacles, barriers and often with many frustrations. I am so proud of him for his cheerful outlook on life and for what he has achieved. I am constantly learning from him. In his mid-thirties, Warren has a good sense of humour and a strong sense of justice. He is caring, a music lover, has a sensitive spirit and loves his church fellowship; he also loves to socialise and drink cappuccinos. His passion is his interest in the police and their work.
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.
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.
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.
My name is Kate Swaffer, I have a younger onset frontal temporal dementia, and I am here to tell you my deeply personal story.
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.
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 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.
Max is a seven year old boy who lives with severe dystonic Cerebral Palsy. Max uses non-verbal communication, specifically his eyes as pointers and facial cues, and uses a wheelchair for mobility. Max lives with his parents B-J and Tim, and his baby brother, Quin. He is happy and interactive and clearly a valued member of the family. He has been attending a mainstream school for two years, where he is very involved in student life.
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.
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.
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.
Tracey was the second born of our three children. She was about six months old when we found out that she had been born with a mild intellectual disability. Living in a farming community as we do, that was not easy for me or my husband to hear. We just did the best we could and took the advice of the professionals at first. She went regularly to physio and to the occupational therapist for exercises with her hands. We'd just keep putting one foot in front of the other; we didn't really know what to do.
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 went to work as usual one Saturday morning and by noon I had triple vision, a sonic screeching noise in my ears and I couldn't stand up straight without losing my balance. By that evening I was slurring my words as though I was drunk and was nearly unable to walk or use my arms and hands. I was taken to a GP who sent me to the emergency department of the local hospital. They told me they thought I’d had a stroke or possibly had a brain tumour and did the relevant tests. They found nothing. I was sent to a hospital in the city where more tests where done and it was found that I had Multiple Sclerosis (MS). I had just turned 19 years old three days before.
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.
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:
In a beat of Wolf’s heart, our lives were changed forever Yes Wolf’s life, but also the lives of our 5 children… and my life! It’s easy to discount the beat that occurred in our own hearts…that very beat that coincided with Wolf’s…That specific split second in our lives, where change and loss occurred for us all Our lives would never be the same