Forty-seven year-old Jodie Chamber’s older brother Andrew, 50, has Down syndrome. Growing up, they were inseparable.
“We were like twins. We were together all the time. We had our own secret little language so mum would go, ‘What does he want?’ and I'd have to ask him and then tell her.” Jodie tells Jenny Brockie on of Insight.
As toddlers, Jodie and Andrew learnt to walk at the same time. As they grew older they went swimming and played cricket. In the schoolyard Jodie got into fights defending her brother.
“One kid, I broke his nose once because he was bullying Andrew so I just punched him in the face … I was 6,” says Jodie.
Jodie and Andrew, as children Source: Supplied
Today, Jodie lives with Andrew and their mum in one big house to help care for him, but says she is his sister first and foremost.
“Mum and I clash a lot with his care. Often she’ll say to me, ‘You’re never going to care for him the way I do,’ and I say, ‘Yes, I’m not because I’m his sister and I’m not going to care like you do.’”
I’m his sister and I’m not going to care like you do.
As Insight discovers this week, it can be a tricky balance negotiating a brotherly or sisterly relationship with a sibling with a disability, and any caring duties they might require from the family.
It’s an experience Sarah McCarthy, 49, is familiar with. Her younger sister Jo, 42, has Arthrogryposis, epilepsy and brain damage. As a teenager, she was expected to take Jo with her everywhere.
“So if I went to hang up at the shops on a Thursday night, and got up to things like smoking, we had to teach her not to tell mum and dad. She never, ever dobbed on any of us,” says Sarah.
Sarah took over fulltime care of Jo when their dad died in 2013. 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, a wheelchair user who needs 24/7 care.
“It’s hard. I know you’re not supposed to say that, I know that’s not the politically correct thing to say, but it’s a job and it’s a hard job to do sometimes. It’s like having a child again, forever.
“We talk about retirement, but for us it’s if she dies. It doesn’t stop us talking about it, doesn’t stop us dreaming about it,” says Sarah.
Like Sarah, Luke Thorne, 23, encountered this challenge at a young age with younger sister Olivia, now 21, who has severe autism. He says their childhood was "hectic".
“I didn’t sort of realise there was anything wrong with her when I was young, and then going to school you go, ‘Oh, this isn’t normal for everyone else!’. You’ve got to clean up your sister’s room because she’s smeared poo on the walls … and inviting friends over; you know she will run naked through the house.”
Luke’s mum Trudy knew some of his friends were awkward with Olivia, and gave him some advice to guide him through his younger years of being both brother and occasional carer . “I said to Luke, ‘The friends that visit and are comfortable and can accept Olivia, those are you friends. The ones who tease or ignore her, those are your acquaintances and you don’t need to bring them back any more,” Trudy tells Insight.
Luke says his sister has good days and bad. “She can be the most beautiful person you’ve ever met. She’s adorable, she has the most brilliant smile and she’ll give you a kiss and a hug, and she’s super cheeky. But when she’s bad, it’s a completely different thing.”
Through puberty Luke says his sister was violent to others and herself, biting her hands and hitting her head if she was upset or denied something she wanted.
“Sometimes you want to pull your hair out because you’re like, ‘What do you want?’ What am I doing wrong?’ It’s this constant balancing act trying to fit your needs with their needs.”
Luke’s sister Olivia now lives in residential care. “One of the things I made clear early on was that I wasn't going to be her carer. I've seen older people that care for their siblings and their life ends in a way.
“People are like, ‘How could you say that?’ And I say, ‘You can't possibly understand what that feeling is like and that exhaustion and that, that terror of being confined to this life forever,” says Luke.
You can't possibly understand what that feeling is like and that exhaustion and that, that terror of being confined to this life forever.
“I feel a weight off my shoulders in terms of responsibility. I now know that if I want to pursue something, I can do that knowing that she will still be looked after and care for.”
Yvonne Whittaker-Rush, 24, has also confronted some a difficult truths since the death of her older brother Ashleigh, who was had severe and multiple disabilities due to an oxygen restriction at birth. He couldn’t walk or talk, and as a child had a gastric tube inserted so he could be fed through his stomach.
“My parents were incredibly busy looking after my brother because he couldn’t do anything for himself. So as a child, I very much kept to myself a lot. My parents were so overwhelmed I didn’t want to add to what they were already suffering.”
Yvonne found it difficult to play and communicate with her brother, given the severity of his condition, further isolating her from the family. By the time she was 13, she had been diagnosed with depression after her mother discovered she had been self-harming. Through counselling with a psychologist, she was able to manage her mental illness before beginning university.
When Ashleigh passed away in 2014, Yvonne was halfway through a Law/Arts degree. No longer in a caring role, she had more time to study and her grades went from average to excellent.
“But it feels to me like my success has come at the expense of my brother dying and that feels horrible … he was holding me back in a way, and it feels like a terrible thing to say but the reality is that it’s true,” says Yvonne.
Yvonne and Ashleigh, as kids Source: Supplied
If this article has raised any issues for you, please contact Lifeline on 13 11 14, or on 1300 22 4636.
This week's Insight looks at what it's like to grow up with a sibling with a disability | - Tuesday 11 July, 8.30pm SBS
