"I now believe that the criticism, made on behalf of children not then born, ignored some of the positive side of growing up with a parent living with disability."
Michael Taggart
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.
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.
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’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 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 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?”
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.
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 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.
It is 2:30am on Monday and Naracoorte greyhound trainer Ben Hughes rises to face what is going to be another busy day. Running a 10-acre greyhound property is no easy task, but today is going to be especially busy as he has a couple of greyhounds racing at Warrnambool. This is business-as-usual for your average greyhound trainer but Ben Hughes is no ordinary trainer. Ben uses a wheelchair for mobility and runs his property and trains his greyhounds on his own.
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.
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.
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 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 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 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.
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.
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.
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.
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.
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.”
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.
The story so far: In 1978, Toni was born. She was extraordinary; always smiling and playful and full of fun, excelling in all she did, chucking her dummy away at nine months, sitting in her highchair feeding herself at ten months, toilet training herself at 18 months - what a joyful and easy child, lucky for us because we lived interstate and had no family backup. As
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.
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.
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 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.
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.
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.
I am a simple person and yet complex at the same time. I have dreams, fears and I sometimes wonder where I will be in say ten years’ time. Currently I am trying to develop a number of businesses that will secure my future and provide an income to support these dreams and goals of mine. Actually I bought my first business when I was 15, some five years ago. A simple business that wasn’t that expensive, but was purchased due to the fact I was in Year 9 and basically wanted a part time job, as most of my peers were starting to get jobs. Never did I think at that stage this small business would be the start of what it has become today.
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.
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.
I am 21 years old. I love anything to do with Playstation and X-Box. I am an uncle to the two cutest boys in the world. I live with my very large extended family and enjoy my life. I completed my School Certificate in 2005 and then completed two years of Transition to Work and one Year of Community Participation with Lifestyle Solutions in Newcastle. In 2008, I was employed part time for six months by Compassion Australia, and I have participated in a number of activities facilitated by the Hunter Peer Support Group.
Alice is a 15 year old girl, who talks about her life journey. Despite the ineffective functioning of vocal cords she was able to work towards communicating effectively with people.
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.
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.
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 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 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’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.
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.
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).
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.
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.
I was born in 1951 in McLaren Vale in the family home. I grew up living at home with my family of three sisters and a brother. The family moved to Willunga when I was four, where we lived with my grandmother and grandfather who was the local doctor.
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.
David acquired brain injury while collecting stones for a friend's garden. A rock fell, hitting him on the head. Early in his recovery David and his mother Brenda identified that he would need a project to create some structure in his life. This realisation was a result of a community workshop that they attended. Brenda had the idea of building a mud brick house, and this soon became David’s passion. In 1992 David started building the house which would become his home.
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 have Cerebral Palsy (CP) and I am unable to walk, so I use an electric wheelchair to move around. I do not really see it as a burden because all people face challenges and experience moments of frustration, whether they live with a disability or not. I do my best to maintain an optimistic attitude and find the humour in every situation.
Wade is 30 years old and is one of three children. He’s the middle child. I was told the morning after he was born by the obstetrician that he was abnormal and I said, “What do you mean?” I was thinking something physical like kidneys or heart or whatever, but he said, “Down’s Syndrome”, and I said, “What’s that?” He said “Mongolism”, and I said, “What’s that?” That’s how naive I was.
Cameron is a 16-year old teenager—smart, intelligent, witty and unsophisticated. He lives with his parents Lorraine and Anthony and his six-year old brother Callum. He is studying in Year 9, at the local state secondary school accessing an inclusive education.
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.
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.
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?
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.
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 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).