Cate and husband Luke Sayers were living and working in Washington DC with their young daughter Claudia when Sayers fell pregnant with their second child. They decided to return home to Melbourne to beclose to family and give their children all the opportunities an Australian upbringing can afford.
When daughter number two arrived safely, in a textbook home birth, the couple were ecstatic and proudly introduced baby Alexandra to the midwife who came to check on her two days later. The ensuing conversation and events that followed are ones Sayers hopes other families will never have to endure.
“The midwife asked to talk to us upstairs, then delivered the news to us: Alle had Down syndrome,” Sayers recalls. “That was obviously met with a lot of distress and kind of disbelief, as you think these bolts of lightning don’t happen to you. We were young, in our 20s, and we didn’t know what it meant. We were just thinking the world was crashing around us. I remember driving to the hospital because Alle had jaundice and had to be put into a humidicrib, and we were so distressed we had to pull over …. [And] while you’re grappling with the emotions and the ‘why’ question, you’re also thrust into this medicalised world of opinions, supposedly superior knowledge, who are all imprinting on you their version of how this will unfold. And if you could rewrite the script it would look completely different.”
Little did Sayers know then the role she would play in doing just that: providing knowledge and support for families and opening up unique opportunities for young Australians with Down syndrome, the most common cause of intellectual disability in which babies are born with an extra chromosome 21.
The couple went on to have two more daughters, Bronte and Lucinda. “We always wanted a table full of pasta-eating babies,” says Sayers with a laugh. “And [after Alle was born] it was further ignited in us to give Alle siblings to be her champions when we were no longer here and to surround her with a circle of love.”
Like any parents, the Sayers wanted all their daughters to have the best start and opportunities they could. Happily, the girls enjoyed the same things: they took swimming lessons together, attended the same kindergarten and would go on to the same primary school, and looked forward to their weekly dance class together. But it was here Sayers began to realise not all opportunities were created equal.
“After three years I could see Alle wasn’t learning in the way I knew she could. She was on the fringe of the class, people weren’t sure how to include her … and she didn’t fit the mould. How can you tell your child: I know you want to continue and you love it, but you can’t belong to that group?”
Over the next six months Sayers searched for a dance school that could cater to Alexandra’s specific needs: a more visual style of teaching that also recognised people with Down syndrome often have lower muscle tone. There was nothing. She contacted Down Syndrome Victoria. Again, nothing. She rang specific instructors, begging them to teach her daughter, but the outcome was the same. Refusing to admit defeat, Sayers took matters into her own hands and decided to open a school herself. “We put the word out to other families, found an awesome dance teacher who importantly knew nothing of Down syndrome and rented a community hall. We started with six kids.”
The response was overwhelming. Within eight months, 40 families were coming from all over Melbourne, eager to take up the opportunity their children had previously been denied: a dance- and fitness-based class that was tailored to their learning needs that also proved highly motivational. An unintended but equally important side-effect was giving parents a network in which they could share experiences and ask questions. At year’s end they borrowed some costumes and staged a casual concert for a 100 family members and friends.
The memory of seeing the children bursting with pride, and the tears of joy on the parents’ faces, is something Sayers will never forget. “I thought: ‘We’ve really changed people’s thinking. Imagine if we could take this out to the community and open up more pathways for these kids, open up more minds, create more opportunities.’”
So she did just that. In 2009, Sayers co-founded e.motion21, a not-for-profit dance and fitness school for children and young adults with Down syndrome. Its motto? ‘Moving bodies, moving boundaries.’ Today, programs are run in nine locations in regional and metropolitan Victoria by three paid employees and 200 volunteers, including Sayers. At least 600 children and their families have benefited from the 40 weekly classes that range from tap to hip-hop, performance and Beat Fit, a class e.motion21 has trademarked that involves drumming on fit balls. The waitlist is long.
“We’d like to do a lot more, because there’s around 15,000 people in Australia living with Down syndrome, seven million globally; and we want to give them the same opportunities to not only be healthy and be able to express themselves but have that sense of success and confidence that’s built through this program,” Sayers says. “But we need to ensure it’s going to be sustainable.”
Research conducted in conjunction with RMIT and Deakin University supports the evidence-based model e.motion21’s methods of teaching are based on. That research has now been presented twice globally, during the 2011 and 2015 triennial World Down Syndrome Congress in South Africa and India respectively. Students from e.motion21 attended and performed in India, affording them an opportunity their parents never thought they’d live to see. The trip was filmed as part of the documentary Raising the Bar and has been screened internationally.
There have been myriad other wins – e.motion21 has partnered with the Australian Ballet School, culminating in a collaborative performance, Breaking Down Barriers; they’ve performed at Parliament House in Canberra at the National Disability Awards; been supported by performers ranging from Jane Kennedy to Natalie Bassingthwaighte and Vanessa Amorosi, and are collaborating with the Melbourne Symphony Orchestra, integrating their Beat Fit program, resulting intours of schools in regional Victoria this October and culminating in a performance at the Sidney Myer Music Bowl in February 2019.
The achievements by Sayers and e.motion21 are profound. But it hasn’t been easy. “It has been incredibly difficult and it continues to be,because it’s a constant struggle,” says Sayers. The organisation receives no government funding, relying instead on the generosity of donors, corporate sponsorship and in-kind support. “There is so much more we’d love to be able to do [but] we’re conscious of keeping costs down, because parents do have a lot of additional financial burdens: increased care responsibilities, medical bills, speech and occupational therapy.”
Of course, it takes a village to raise a child, and Sayers is at pains to point out the incredible support of her family, in particular her other daughters. When the children were younger they were playing at a local park when a child came up and asked why their sister was different. There was confusion among the siblings; unsure to whom she was referring.
“They’ve never seen Alle as different, they just see her as Alle and they’re very proud of that,” Sayers says. “The strength of their relationship is now mirrored in our broader network of friends and their children; whether they’re teenaged boys or girls, they have the same love and respect and care.”
If only society responded the same way. Sayers says that while mainstream education is now open to children with disabilities, that’s where it stops. “They fall off a cliff post-secondary school. Providing dance and fitness programs is crucial to health and wellbeing and social connections, but it isn’t getting them jobs,” she says, pointing out a meagre five to 10 percent of young people with Down syndrome of working age are employed. “That leads to all sorts of mental health issues.”
Again, it has been a case of Sayers and her peers to the rescue. The next step is Impact21, a pioneering education and employment program for young people with intellectual disabilities, delivered in university settings throughout Australia. Employer-driven, the tertiary course will be individualised with a curriculum co-designed by employers, participants, parent and educators. A 2018 pilot program has already secured the support of corporate employers PwC (where husband Lukeis CEO), Dulux, Deakin University, Sodexo and Melbourne University.
“Alle certainly expects to go to uni: she hears her sisters talking about it, and why shouldn’t she?” asks Sayers. “We’re looking to fill the education gap that leads to meaningful employment.”
In Sayers’ grand plan for a changed world society would be a place where people with Down syndrome are included in every facet of life, including further education and employment. “If you could rewrite the script it would look completely different. Maybe it’s not the place you planned to go, but it’s equally beautiful and it’s actually enriching, because you’ve got another huge dimension to your world in your parenting, your friendships, your perspectives, your other children and their friends. And the ripple effect of having a person with Down syndrome in your life is something almost every parent would not change, given the choice. That’s the work we want to achieve through e.motion21: that for every new mum holding that baby it isn’t upsetting or distressing. Because it’s an acknowledgment of the potential this lifeform has, rather than fear and ignorance and lack of understanding.”
You need look no further than Alexandra herself, a child who has grown up with all the care and love and support and, most importantly, the opportunities her peers have had, to understand what Sayers is talking about. A gregarious, happy, confident 15-year-old who is on her local school’s basketball team, speaks Italian and weekly takes part in contemporary dance, hip-hop, jazz, tap, Beat Fit and performance classes, Alexandra’s dreams for the future are the same as anyone’s.
“When I grow up I would like to go to university and study Italian. I’d like to be a mother, and I’d like to work at e.motion21, helping with dancing,” Alexandra says. And why shouldn’t she?
This story originally appeared in the May 2018 issue of Vogue Australia “How Cate Sayers is building a brighter future for individuals with Down syndrome”