Nic Edwards’ room, a granny flat at the back of his parents’ house, is immaculate. A packet of wet-wipes sits on his nightstand. His bed is made. Every visible object serves a direct and immediate purpose — nothing is just lying around.
He walks back and forth, from one end of his drum kit to the other, trying to place a white sheet over it so it won’t gather dust. He pulls on one side and the sheet lifts to reveal a cymbal on the other, so he steps around it, mumbling to himself, and pulls on the other side, exposing the edge of the bass drum.
When he finally gets it he whispers a triumphant “there we go” and steps back to admire his work.
Edwards is 24 years old. He is the drummer for a band he formed with his friends Mike, Noel, and John, called The Titans.
“We do all sorts of different songs,” he says. “We do a rock song, and then a quiet song; then rock, then quiet; rock, quiet.”
When he speaks, his voice is muffled and he has to fight to force certain words out. When he smiles, the sides of his eyes crinkle.
His inspiration for his music is as eclectic as the group’s genre, ranging from 1980s heavy metal band Icon to current chart-slaying hip hop artist Kanye West. On Fridays, Edwards studies music at TAFE in Fremantle, where he hopes to get the skills and knowledge he needs to take his passion even further.
“Connie is videoing the band to go on the laptop,” he says. “And then I think me and her are working at some point on some show thingy. She will put it on a screen or something like that— I think— to go in an art gallery.”
Who is Connie?
“Connie is my support worker,” Edwards says.
Edwards has Down syndrome.
Medical advancements have dramatically changed things for the 1 in 1,100 Australians born with a third copy of chromosome 21. Where a few decades ago most were not expected to live past the age of 30, many are now living into their 60s and beyond.
They are encouraged to strive for independence, defy expectations and aim high.
But individuals with Down syndrome, like everyone else, have unique needs, desires, and capabilities. The balance that must be struck between encouraging independence and providing assistance is not a universal one. It will vary for each person, based on whether they want to change the world or are challenged enough by the prospect of making their own lunch.
Under an outdoor patio in Swanbourne, Mike Buchanan and his 22-year-old Down syndrome daughter Sarah tell me about her many boyfriends. There is Thomas, but he has a girlfriend, so he’s out. There is Josh. And there is Daniel.
“Mum asked me when I was getting married to Daniel,” Sarah says. “But… I can’t get married. Cooking, washing, ironing, vacuum… It’s hard. I can’t do it.”
Just the mention of ironing makes her shake her head and moan, sinking her head on her crossed forearms on the table. Mike laughs.
“Long term, we would like [for her] to develop a degree of independence,” Mike says. “At some point she may well have to look after herself, with some support.
“I think Sarah has a lot more ability than she shows.”
One of the ways Sarah could develop independence is by taking public transport. Sarah’s mother Yvonne has to take her to and from Warehouse café where she waitresses every Friday. When Yvonne is away like she is right now, Mike has to take time off work to give Sarah a lift instead.
She could get there on public transport, but that would require training. Mike explains someone would need to do the trip with her at least half a dozen times, staying back enough to make sure she knows what to do. Where is the bus stop, Sarah? Which bus do you need to take? Now, get on the bus. Where do you need to get off, Sarah?
For the next few trips they would still be on the bus, but without Sarah’s knowledge, watching from a distance to make sure she is okay.
“That’s the biggest challenge,” Mike says. “That balance between [fostering] independence and making sure she doesn’t come to any harm.”
Down Syndrome Western Australia executive officer Julie Ireland says the assumption is always that people have capacity and they can learn to do things themselves. Support workers are encouraged to teach people with Down syndrome how to do things rather than do it for them.
“It might take longer for a person with Down syndrome to learn to do things; it doesn’t mean they can’t learn to do them,” Ireland says.
As the mother of a 24-year-old with the syndrome, this is an issue Jan Gothard, author of the book Greater Expectations: Living With Down Syndrome in the 21st Century, has had to deal with herself.
“That’s a really challenging one for parents,” she explains. “All the issues that are raised about encouraging your children to believe in their own ability, to believe that they’re capable of doing everything they want to do, are relevant.
“But the reality is that people with Down syndrome can be more vulnerable because they don’t have the same capacity to access resources.”
For her to independently travel to her workplace, to the 10 hours per week of volunteering at a childcare center, and to TAFE, Gothard’s daughter had to go through some transport training.
“We worry about her because she’s very small so she looks vulnerable,” Gothard says.
“We have to let her go, but it’s very hard for us to do that.”
On Tuesdays, Wednesdays, and Thursdays, Sarah is picked up by Simply More Possibilities, an alternatives to employment organisation for people with Down syndrome and other intellectual disabilities. They do such things as dancing, zumba, bowling, and cooking.
In the morning, Mike wakes Sarah up. She does everything else herself— gets herself up and dressed, has breakfast. “I still make your lunch,” Mike says, observing his daughter. “You should be making your own lunch, shouldn’t you? You know how to make a sandwich. You’re just lazy, aren’t you?”
“No way!” Sarah protests, a smile on her face as she crosses her arms over her black shirt.
Sarah is an adult and as far as society and the law are concerned quite capable of making her own decisions regarding work, dating, or marriage, for instance.
“But,” Mike says, “And this is where I struggle, one minute Sarah will be watching Play School on TV (Sarah chuckles) and then she’ll watch opera. Or she’ll be dancing to One Direction, and the next minute she’ll be watching a kid’s cartoon. So it’s not as simple as saying someone is 18 and they can make choices and decisions.”
He tells me about a lady on the board of the Down Syndrome Association whose Down syndrome daughter is learning to drive. “I couldn’t ever see Sarah, ever…” he pauses and turns to his daughter. “Would you like to drive a car?”
“Um, not really, no,” she says. She stares at the table in front of her, never lifts her eyes from it. “I’m a bit too young to drive.”
“Bit too young…” Mike echoes.
Maybe he should get her on a bus by herself first, he reflects.
Ireland stresses the individuality among people with Down syndrome. “They’ve all got strengths and weaknesses,” she says, “Things they’re really good at and things they’re not so good at.”
Kate*, 34, dreams of ending up like her Mum, who was a librarian.
She lives alone in a little home in Innaloo. On her days off from her work with Activ Foundation, a disability employment and services provider, a carer comes and helps her buy groceries, run errands and pay bills.
“I want to do things and be recognised for the things that I do,” Kate says.
She would also like to be able to breathe normally without needing a machine at night to help her do so.
Edwards just wants to play sport and perform music.
“I used to play footy,” he says. “I think I was dreaming about, if I could play footy and really get into it. I know that I dreamt about playing guitar and the drums and things like that, anyway.”
“Things like that, anyway” is Edwards’ catchphrase. He punctuates each sentence with it.
“I dreamt about, like, if I was in a band. And we did,” he says. He got there.
Sarah can’t think of any dreams she has for the future. She seems quite content watching opera in her room, so long as no one asks her to do the ironing.
Mike has hopes for his daughter, hopes that go beyond even her taking the bus on her own. “At the end of the day, though, it’s about trying to make sure Sarah’s life is worthwhile, that she is happy, that she gets something out of it.”
Would Sarah say she is happy?
“Yeah,” she replies simply, clearly, without hesitation.
If she truly means it, she is better off than many.
*Name has been changed