In an Australian first, four research assistants with Down syndrome are gathering data on how young adults living with the disability are faring across the country.
The new assistants will collect data for the Adulthood for Gen Zs with Down Syndrome project
There are hopes the study will have a lasting impact once it concludes
Its leader says the assistants have "enriched the project in so many ways"
The project, Adulthood for Gen Zs with Down Syndrome, is run by the University of Queensland's Down Syndrome Research Program (DSRP). Its director, associate professor Rhonda Faragher, is supervising Rebecca Flanagan, Alana Pettigrew, Mia Johnston and Michael Cox as part of the study.
For 40 years, the DSRP has tracked all babies born with Down syndrome in the greater Brisbane region. The globally recognised program started in 1978, during a decade when the routine institutionalisation of Down syndrome babies was discontinued.
The study has tracked the first generation of people with Down syndrome to be cared for by their families, educated at school and who now live in the adult community.
"We wanted to know what adulthood was like for these young people who have been in inclusive education, and we suspect it's very different from those born 40 years ago," she said. "The program has nurtured families and provided support for them when it was not available. "[In the 1970s], if families chose to take those babies home, and it was against pressure to institutionalise them, they were told, 'Well, it's on your head.'"
Ms Flanagan said she had travelled to Tasmania as part of her new job.
"It's important to ask the right questions in the right way so people can understand what we want to know," she said.
Julia Hales hosts a documentary that raises questions about her very existence. Here's why Actor Julia Hales is the ABC's first TV host who has Down syndrome and in a documentary on ABC TV she explores the issue of prenatal testing. In February, Ms Flanagan recorded a speech with her team which was played at the United Nations in New York. "I taught myself how to do Zoom and we spoke about what we did, what we were hoping for, what research [data] we were getting, how they reacted to our interviews," she said. Ms Flanagan also told the UN how important it was to be employed. Dr Faragher said the reaction to the project from the UN and the broader community was "wonderful". "Unfortunately it's unique that we've employed people with Down syndrome on a proper wage as research assistants," she said.
"In our community we hear pockets of it, but people have been quite fascinated and want to know more. "It's not about being kind or in any way tokenistic — this employment strategy is absolutely because these individuals are doing work that we simply cannot do without their contribution. "We need their expertise and working with this group of people has been just brilliant.
Ms Flanagan, a former Brisbane Hilton employee, said being born with Down syndrome meant that was a part of who she was. "It's how you were born and raised," she said.
Her new boss, whose daughter was also born with Down syndrome and now works in childcare, agreed. "We bring our diversity to the richness of humanity," Dr Faragher said.
"People with Down syndrome have an extra chromosome, but that's only one small part of them." Down syndrome was first described in 1866 and has one of the longest histories of documentation of any disability. About one in 1,000 babies in Australia are born with Down syndrome. The Gen Z study will finish in May, but Dr Faragher said that would not be the end of its impact. Her team plans to produce podcasts and lesson plans to distribute to those in health, education and the legal profession, including to police, in order to inform the community on how Down syndrome adults are experiencing life.
"When my daughter was born 25 years ago, the information was very poor and [the predictions were] nothing like the adult she's grown into," Dr Faragher said. "People still hear, 'They won't go to school, they won't get a job' — so we need to get this information out."
The project is funded by the National Disability Research Partnership and Department of Social Services and hosted by the University of Melbourne.
To become involved or find more information, email firstname.lastname@example.org