A great zest for life
Down Syndrome Research Program assistants paving the way for future generations
Mia Johnston, Alana Pettigrew, Rebecca Flanagan and Michael Cox have high aspirations and a great zest for life.
They’re living the kinds of lives a UQ research project found is more than possible for people with Down syndrome.
The group travelled around the country to interview 26 people aged between 18 to 30, to gather information that will inform national and international policy and practice.
The team, led by Associate Professor Rhonda Faragher and Dr Janette Lloyd from UQ’s School of Education, conducted interviews and focus groups, exploring the quality of life of Gen Zs with Down syndrome.
It’s part of the Down Syndrome Research Program (DSRP) which has been running for nearly 45 years and is believed to be the most complete and longest running study of its kind in the world.
Down syndrome is the most commonly occurring chromosomal condition, affecting around one in 1100 babies born in Australia.
Alana Pettigrew, Associate Professor Rhonda Faragher, Mia Johnston, Dr Jan Lloyd and Rebecca Flanagan.
Alana Pettigrew, Associate Professor Rhonda Faragher, Mia Johnston, Dr Jan Lloyd and Rebecca Flanagan.
When the chance to work on the project came up, Ms Pettigrew jumped at the opportunity.
“My Mum and my sister used to be research assistants, and I wanted to follow in their footsteps,” Ms Pettigrew said.
“They inspire me for everything.”
Alana Pettigrew
Ms Pettigrew has worked in a variety of jobs and serves on a Down Syndrome Queensland committee.
In her spare time, she sings in a choir, writes newsletters, and makes beautiful crochet dolls for her online business, Alana’s Creations.
Ms Flanagan works 3 days a week in a grocery store, but her passion is exploring paranormal activity and horror movies.
Rebecca Flanagan
“The first [horror] movie I saw when I was 10… I was under the covers for the night,” she said.
“I like the fear factor, the shock factor.
“My favourite is the Amityville Horror franchise.”
Ms Johnston works in administration at the Queensland Children’s Hospital, and a childcare centre.
Mia Johnston
When off duty, she spends her time doing acting and dancing classes.
“I love off-Broadway musicals and improv,” Ms Johnston said.
The Gen Z project was a unique experience for everyone and encouraged the trio to move outside their comfort zones.
“I wasn't sure what to expect and wondered what it would involve, but I’m here and enjoyed it,” Ms Flanagan said.
“I've been able to travel and see different places around the country.
“I actually learned how to use a ride-sharing app for the first time, so I learned lots,” she said.
While the research assistants picked up new skills, it was a two-way street according to Dr Faragher.
“They were invaluable because they helped us see things in a different way, like choosing words and pictures to make the information more easily understood by the study participants,” Dr Faragher said.
“We were learning as much from them as they were from us!”
Communicating with the study’s participants was the key to its success, and the research assistants made all the difference.
Ms Pettigrew was able to use her signing skills to communicate with one of the study participants who had difficulty speaking.
“I used my hands to help him say what he wanted to tell us about his life,” Ms Pettigrew said.
Ms Johnston discovered she had an eye for detail, which was particularly useful for checking research transcripts.
She has also embraced new technology.
“I’ve got 3 devices and use Google Maps to look up the train timetables,” Ms Johnston said.
Just like most people since the pandemic began, they’ve now mastered Zoom calls.
“I never knew how to do a Zoom call before, but I’m competent now,” Ms Flanagan said.
Alana Pettigrew
Alana Pettigrew
Rebecca Flanagan
Rebecca Flanagan
Mia Johnston
Mia Johnston
Michael Cox, Mia Johnston, Alana Pettigrew, Rebecca Flanagan and Dr Jan Lloyd at a showcase event at UQ in July, where the research assistants presented their findings.
Michael Cox, Mia Johnston, Alana Pettigrew, Rebecca Flanagan and Dr Jan Lloyd at a showcase event at UQ in July, where the research assistants presented their findings.
It’s reflective of what the Gen Z research uncovered.
“The study found this generation are engaged with technology in really quite clever ways, even people who had limited communication were using their devices to find things that interested them online, as well as text and FaceTime,” Dr Faragher said.
The study also found people with Down syndrome were acutely aware of their limitations and disliked being treated differently.
Dr Faragher said young people with Down syndrome expect to be treated with respect and dignity, but the study findings suggest low expectations and perceptions of incompetence persist.
It’s something everyone on the team had experienced or witnessed.
Associate Professor Rhonda Faragher and Dr Jan Lloyd.
Associate Professor Rhonda Faragher and Dr Jan Lloyd.
Professor Faragher cited a recent example in a café when research assistant and coffee aficionado Michael Cox ordered a cup of ristretto.
His explanations about how to make the coffee were ignored, and he was instead served a flat white.
“It was the most extraordinary rudeness and discrimination,” Professor Faragher said.
“It makes me feel incredibly angry because it gives you an insight into the way people are treated on a routine basis”.
But the team doesn’t want to focus on the negatives, they’re too busy shattering the myths about Down syndrome by pursuing their hopes and dreams and finding joy and satisfaction in their relationships with family and friends.
They are also paving the way for future generations around the world with their research which was presented to the United Nations in New York earlier this year, as part of the World Down Syndrome Day Conference.
The research, Stepping out in the world: the new adulthood for Gen Zs with Down syndrome, was funded by the National Disability Research Partnership (NDRP) hosted by the University of Melbourne and funded by the Department of Social Services.
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