This week Insight hears from siblings carers, and how they deal with the many varied experiences of growing up with brothers and sisters with disabilities.
Around 1.4 million Australians have a profound or severe disability. Siblings play a vital role in their early lives, but little is known about their experience. How do they view their relationship? What role do they expect to play in their brother or sister’s adult life?
Jodie Chambers, 47, says she and her brother Andrew, 50, were “like twins” growing up. They were completely inseparable. Andrew was born with Down syndrome, and today also uses a wheelchair.
As children Jodie understood his way of talking better than her mum, and was his protector in the schoolyard.
“One kid, I broke his nose once because he was bullying Andrew so I just punched him in the face. I was six,” Jodie tells Jenny Brockie on this week’s episode of Insight.
Siblings of people with disabilities grow up with a complex mix of emotions – love, loyalty, care and compassion, but also shame, anger, guilt, resentment and grief.
Luke Thorne, 23, has a younger sister Olivia who has severe autism. He says she can be a beautiful person, adorable and super-cheeky. But in adolescence she could be violent and head-butt people unconscious, smash things and run off into the night.
The strain on some families can be intense. Luke’s parents divorced and he ran away from home when he was 16.
Some siblings take on caring responsibilities, willingly and otherwise.
Sarah McCarthy, 49, took over fulltime care of her sister Jo, 42, when their dad died in 2013. Jo was born with Arthrogryposis (joint contractures), epilepsy and brain damage.
Sarah and her husband were living in Canberra with their two children. They quit their jobs and sold their house to move into the family home in Sydney with Jo, who needs 24/7 care.
“It’s like having a child again, forever. We talk about retirement but it’s a bit of a pipe dream. I hate to say it but for us, it’s if she dies”, Sarah tells Insight.
At 13 Jessica Lim started caring for her older brother Jason who has Pelizaeus-Merzbacher Disease, an intellectual and physical disability.
She spent two hours before and after school feeding, bathing, dressing and helping him go to the toilet while her parents were busy running a restaurant.
“I developed an eating disorder. I was internalising everything and putting on this face to go to school, for my parents to think I was OK, so the only thing I could control was my eating,” says Jessica.
Tuesdays at 8.30pm on SBS.