University of Queensland hires assistants living with Down syndrome for Gen Z study
In an Australian first, four research assistants with Down syndrome are collecting data on how young adults living with disabilities are doing across the country.
- The new assistants will collect data for the Adulthood for Gen Zs with Down Syndrome project
- It is hoped that the study will have a lasting impact once it is completed
- Its leader says the assistants have ‘enriched the project in so many ways’
The project, Adulthood for Gen Zs with Down Syndrome, is led by the Down Syndrome Research Program (DSRP) at the University of Queensland.
Its director, Associate Professor Rhonda Faragher, is supervising Rebecca Flanagan, Alana Pettigrew, Mia Johnston and Michael Cox on the study.
For 40 years, DSRP has tracked all babies born with Down syndrome in the greater Brisbane area.
The globally recognized program began in 1978, during a decade when the routine institutionalization of babies with Down syndrome was disrupted.
The study followed the first generation of people with Down syndrome who were cared for by their families, educated in school and now live in the adult community.
Dr Faragher said she was “intrigued by Generation Z”.
“We wanted to know what adulthood was like for these young people who had an inclusive education, and we think it’s very different from those born 40 years ago,” she said.
“The program took care of the families and provided them with support when it was unavailable.
“[In the 1970s]if families chose to bring these babies home, and it was against the pressure to institutionalize them, they were told, ‘Well, it’s on your head.'”
Go to the UN
Ms Flanagan said she had traveled 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.
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 talked about what we were doing, what we were hoping for, what research [data] we received, 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 wider community was “wonderful”.
“Unfortunately, it is unique that we have employed people with Down syndrome with decent salaries as research assistants,” she said.
“In our community, we hear about it, but people have been quite fascinated and want to know more.
“It’s not about being nice or tokenistic – this employment strategy is absolutely because these people are doing work that we simply can’t do without their input.
“We need their expertise and working with this group of people has been just brilliant.
“The Wealth of Humanity”
Ms Flanagan, a former Brisbane Hilton employee, said being born with Down syndrome meant it was part of who she was.
“It’s how you were born and how you grew up,” 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,” said Dr Faragher.
“People with Down syndrome have an extra chromosome, but that’s only a small part of them.”
Down syndrome was first described in 1866 and has one of the longest documentation histories of any disability.
About one in 1,000 babies in Australia is born with Down syndrome.
The Gen Z study will wrap up in May, but Dr. Faragher said that won’t be the end of its impact.
His team plans to produce podcasts and lesson plans to distribute to health, education and legal professionals, including the police, to inform the community about how adults with Down syndrome live. the life.
“When my daughter was born 25 years ago, the information was very poor and [the predictions were] nothing to do with the adult she has become,” Dr Faragher said.