At 18 years old, Brisbane’s Madeline Stuart is the world’s first professional model with Down syndrome. With help from her mum Rosanne, she’s converted her global social media following into a modelling career – and turning the notion of beauty on its head. Madeline’s Down syndrome (DS) was diagnosed at birth. Soon after, single parent Rosanne was told she had an 11 % chance of survival. But despite this, Madeline has gone on to become a sensitive and inspirational young woman who values her health and career. Her story begins with initiative. A passionate dancer, Madeline decided in March last year to lose weight and get fit for her dance performances. Then, the following August at Brisbane’s EKKA show, Madeline attempted to join a group of models on one of the stages, but was frustrated when Rosanne said she wasn’t allowed. To give her the experience, and as a reward for her fitness training, Rosanne paid for a professional model shoot of Madeline, which she posted into a closed-group website for parents of children with disabilities. The photos went viral, the job offers rolled in and the rest is history. Another person who has inspired a dramatic lifestyle change for people with DS is dance teacher Alison Cotterell from Street Jam Dance Studio in Bundall, Gold Coast. While Madeline is breaking DS stereotypes on a global level, Alison’s weekly dance classes for local people with DS are proving that these guys can, and will, overcome obstacles of their condition when given the opportunity. Alison, who was requested by the Gold Coast Down Syndrome Organisation coordinator to set up the children’s class four years ago, runs two classes of hip-hop and contemporary jazz: one for children and one for young adults. Since the beginning, Alison has noticed huge changes in her students – and herself. “We can tailor the specific classes to allow the students to flourish in their element. I give my students with DS the same boundaries as any other student, and their progress and growing confidence is incredible,” Alison says. “My perception of DS has completely changed. They’re capable of so much more than we think. Dance is a brain thing – rhythm, steps, memory – and not always easy. But they’re constantly exceeding expectations.” One of Alison’s 14-year-old students has recently transitioned from the DS class to the mainstream class to join the strongest of the studio’s dancers, which she sees happening for a number of other students in coming years. Similarly, Madeline Stuart’s story and love for dance prompted Brisbane’s InsideOutside Theatre Company to launch a new dance ensemble for young people with a disability who are working towards a career in the arts. Today, people with DS are enjoying the participation, goals and triumphs of ordinary people – but this hasn’t always been the case. What is Down syndrome? DS is the most common form of intellectual disorder that we know, with one in every 700-900 babies worldwide born with the condition. This number is lower in Australia, where there are approximately 13,000 people currently living with DS; a figure linked to our higher birth termination rates. While human DNA is made up of 46 chromosomes, DS results from the formation of 47 chromosomes. Diagnosed at conception, DS produces similar effects across all social and ethnic classes and presents no cure. People with DS have some characteristic physical features, development challenges, some level of intellectual disability and usually experience other health issues. These include: • Heart defects • Vision problems • Hearing loss • Blood disorders • Sleeping problems • Gum disease and dental problems • Hypothyroidism (underactive thyroid) • Spinal problems • Hypotonia (low muscle tone) Every person is unique, therefore the level of developmental delay is different and unpredictable in each person. While some people with DS go on to lead ordinary, fulfilling lives, others require life-long care and support. Nowadays parents, organisations, educators and researchers argue that DS is not the most important influence on the individual’s life; rather the social, cultural, environmental and family factors that shape who they become. Alison says that one of the few challenges for her dance students with DS is their level of health and accompanying health conditions. “Most of our students have had heart operations as babies. And in the early weeks, the adults grow tired faster or aren’t as fit because they’ve been excluded from physical activity and sport in the past,” she explains. “But they mature and grow stronger each lesson, and their memory is phenomenal. I am often asking them about last week’s dance steps that I’ve forgotten, because they remember so well!” Past health rates and experiences Observing Madeline’s sophisticated fashion sense and photographs, and the enthusiasm of Street Jam’s dancers, it’s hard to believe that some 60 years ago these bright, resolute individuals were considered much less capable than ordinary people. According to the Royal Australian College of General Practitioners (RACGP), the 1950s presented poor attitudes, low expectations and limited opportunities for people with DS.But while their health outcomes still rate much lower, the increase of life expectancy for people with DS from 15 to 60 years reflects the impact of research and shifting perceptions of the condition. Families, clinicians and associations have also, for the last 30 years, campaigned against institutionalisation and improved the access to health care, inclusion and education for people with DS. They now grow up in family environments and enjoy similar, if not equal, opportunity to education and employment. While they usually attend mainstream schools, children with DS have often been separated from their peers, which can further delay their social development. Exclusion from physical activity and sport has also led to inertia, and weakened muscles and bones among children with DS. Socialising and participating with their peers is now widely encouraged for children with DS, which assists a smooth transition into adulthood and encourages their self-expression. Socialising is the basis of Alison’s only rule for her classes at Street Jam. “We have one rule: students can hug each other before and after class, but not in between. Otherwise we don’t get any dancing done,” Alison laughs. “These students really love each other.” Madeline Stuart has just walked the runway of New York Fashion Week. Ellen DeGeneres has been in contact. She’s been nominated for the Young Australian of the Year award. Her eco-luxe handbag line is flying off shelves. She’s booked up for shoots. And despite three holes in her heart and a leaky valve, Madeline is feeling stronger than ever. pindaramagazine.com.au Pindara Magazine 23
Pindara Private Hospital Magazine - Issue Six
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