"My achievements at work fed into my sense of self and identity, which made me feel good about myself."
Kerry Telford
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’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.
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 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.
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 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 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 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 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’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.
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 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.
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 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 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.
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.
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.
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 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.
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 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.
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.
I am 23 years old and I have cerebral palsy. I use a wheelchair for mobility and live at home with my parents. I enjoy travelling and having new experiences. In spite of my physical dependence on people, I think it is very important and empowering to be able to run your own life by directing your own support and care the way you want and need it to be.
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.
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.
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).
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 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.
Hi, my name is Lee Ugle and I have Cerebral Palsy (CP). I was born in 1942, the second last of six children. My mother was told I would be lucky to see my thirteenth birthday. I am now 68 years old and the only sibling still alive.
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.
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 had a motorbike injury at the end of 2002. Now I’m a T10 complete paraplegic. I’m in a wheelchair all the time. I can’t move my legs or walk. I can’t feel anything from about my bellybutton down.
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.
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.
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 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 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.
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 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.
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.