Four years ago, Cate Sayers (above) founded and is now the CEO of e.motion21, a not-for-profit organisation providing dance and fitness programs specifically tailored for young people with Down syndrome.
The service is available only in Victoria at present. However, based on the success of the program there, the volume of email enquiries Cate gets from parents and carers around Australia, and the very real need to service what statistically amounts to a significantly large group of people Australia-wide, Cate would dearly love to see e.motion21 funded and resourced appropriately to “go National”.
According to global research, Down syndrome occurs once in approximately every 860 babies born throughout the world, male and female alike. It is one of the most common known causes of intellectual disability and is indiscriminate about who it affects.
In Australia one in 1100 babies are born with Down syndrome, which is 45 to 60 births a year in Victoria. Each of these babies has an extra copy of chromosome 21 inside each of the body's cells (hence the biological term, Trisomy 21).
Stats and facts aside, Cate’s view is: “The only thing people with Down syndrome share in common is that extra chromosome. They are much more like their families than they are each other.”
“My second eldest girl has Down syndrome,” says Cate, explaining that giving birth at a young age to a child with Down syndrome, while unexpected and challenging, has opened up her world and provided her with a sense of completeness and fulfillment she’d never ordinarily have attained.
“Ally is incredible. She inspires me on a daily level. I began e.motion21 when I realised she wasn’t learning at the local dance school where she was with her sisters in the way I knew she was capable of learning. I had to find another environment for her that supported her desire to dance and explored her creativity. Nothing existed.
“I believe every child deserves the same opportunities in life to learn and grow and feel special. Alexandra was at risk of losing confidence and self-esteem because she learned in a different way and I wanted to solve that.”
Verbal instructions and auditory processing can be difficult for people with Down syndrome. Understanding this communication block is important when finding effective methods for learning and communication. e.motion21, Cate points out, uses a lot of visual communication tools in its classes, such as coloured masking tape on the floor for choreographic placement, and sign language, which both support learning in a really seamless way.
Cate is also acutely aware that the wider inability of society to consider diversity of need also limits opportunity: “How much more do we all learn when exposed to experiences and opportunities and challenges we don’t consider or won’t face. I see how hard my daughter works every day to keep up in the classroom, sitting up straight for all those hours, joining in the games in the playground and with her friends. Then she comes home and practices her handwriting to be neat and legible like everybody else’s, but it takes her four times as long to do it. I admire her because she does it all so happily and willingly, and because she wants to be part of the team.
“She epitomizes for me what we want to achieve at e.motion21. We want the people who come to us to step up to the challenge to be their very best. We also want people in the organisation and the community to experience the challenges and opportunities and experiences we have to offer and be the best they can.”
From a handful of participants e.motion21 now engages on a weekly basis with more than 150 people aged between 4 and 35. It’s an age group Cate hopes to expand further. There are 120 “generous, committed” volunteers involved in the program’s delivery, of which Cate is one.
Volunteers undergo rigorous vetting procedures and receive intense training so they have the skills to properly deliver the “world class” program. The service model expects all those who work for it to “attend to their environment in the same way they would a paid environment”.
“We only moved off my kitchen bench a year ago and our feet are firmly planted in grass roots, but it’s not at the expense of professional service delivery,” explains Cate, who has steered the not-for-profit through its DGR requirements to Tier 1 philanthropy status and describes her own personal learning curve – running and building an organisation in an environment of pinched resources and with unsecured funding – as a “vertical trajectory”.
For Cate and e.motion21’s continuing development, it has also been important to establish a core staff, members of which are remunerated, to build a sustainable organisation.
The motivation behind all this work continues to be the simple and powerful outcomes for individuals – those who are part of the program and those in the wider community who experience it.
“What drives me everyday – that’s easy,” says Cate.
“I see the changes in people, the changes in families. I see young adults who historically suffered social isolation and depression as a result of their inability to communicate verbally with others – with no job, no purpose – arrive in the program and three years later they are radiant, taking risks in the supported environment, speaking more freely, making friends, participating as part of a team and with such a sense of self. I see family and extended family members and friends, some of whom are celebrating their child and Down syndrome for the first time, proud and part of something larger.”
Research indicates with improved health and education there have been tremendous changes in the life outlook for people with Down syndrome. Cate believes improved opportunities, whether they come through education or employment or opportunities like dance, will help realise the potential of these people in a way that hasn’t happened in the past.
Cate goes on to point out it's often not the disability that is the barrier to people reaching their potential; it is the reaction to the disability from society.
Society, she believes, benefits when every person is an active contributor whether that is through “meaningful employment, relationships, good health, volunteering, etc. A great many people living with Down syndrome have not reached their potential simply through inadequate support and lack of opportunities. They have similar hopes and dreams as the rest of us. They want to work, live independently and enjoy life in the same way we get to do that. We need to support them in this and see all society benefit.”
Dance and movement is the vehicle through which Cate’s organisation explores, supports and develops the potential of people living with Down syndrome. It is also the way e.motion21 showcases the talents of people with Down syndrome and achieves its wider aim to shift outdated ideas around the capabilities of people with disabilities.
“I've only been on this journey for 10 years,” says Cate, “but we’ve still got a long way to go as a society in terms of embracing all people and all abilities. It really comes down to people’s understanding to authentically accept and embrace diversity.”
For more information and to support, go to:
e.motion21 ‘Moving Bodies, Moving Boundaries’