"I think I owe a lot to what I’ve learned through tertiary education, where I found support."
Jarad McLoughlin
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.
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.
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.
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.
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 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.
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?
My name is Kate Swaffer, I have a younger onset frontal temporal dementia, and I am here to tell you my deeply personal story.
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.
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.
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.
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 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.
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.
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.
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.
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.
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.”
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.
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.
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’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 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 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 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.
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 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 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.
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.
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.
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 live with cerebral palsy. There’s obviously been some physical challenges, but really it’s almost a part of life. I think it’s all about just giving things a go and either you overcome those challenges, or you realise the occasional limitation where you think, “Oh, I can’t quite do that.”
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.
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.
Sam wasn’t born with a disability; he had an acquired brain injury at the age of two. He was one of those extremely active children who never crawled - he walked at 10 or 11 months. He didn’t walk for very long; he sort of got up, walked a couple of steps, ran everywhere and climbed everything. We use to live on a property and when Sam was two years old, he climbed the farm gate, fell, and hit his head on a fence-post causing a small depressed fracture and bruising on the neck. Initially he was okay, he just had a very tiny cut, and then about half an hour later he started getting a bit groggy, so I took him to the local hospital.
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 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.
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.