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?”
In recent times I have been asked a lot about how I manage my care support at home. This, together with thinking about the NDIS National Disability Insurance Scheme) and how support can be much more individualised, spurred me to write about my experiences. I hope it will explain some of what I do and what I have learnt along the way to those of you who might be looking at self-directed supports at home.
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.
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 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.
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’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.
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.
I think sometimes people are pushed into leadership, because that is what happened to me. I was brought up in a small country town in South Australia and lived a fairly ordinary life until I was 14 when I was sent to the Somerton Crippled Children's Home in Adelaide for three months of intensive physio.
I am a 54 year old male who had 6 strokes in 3 days at the age of 40 and spent 6 months to a year in hospital and rehabilitation recovering after I had almost died. As a result I am now using an electric chair and can only use one hand and arm. I can walk a little aided by a quad stick but only a few feet.
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.
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.
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.
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 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.
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.”
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.
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 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.
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.
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.