16 C
Byron Shire
December 1, 2022

Study suggests Gen Z with Down syndrome have embraced new tech in lives full of meaning and purpose

Latest News

Roller skating, skateboarding and more for Lismore

The ‘Lismore Urban Sports Precinct’ will deliver skateboarding, roller skating, BMX, scootering and sport climbing infrastructure as well as associated recreational infrastructure. 

Other News

Amazing Grace

Oh, dearest Hannah! (Letters, Hannah Grace, Echo 9 Nov). I am so glad that my very, very good friend...

A festival for film BUFFs

Building upon last year’s electric event, the Byron Underground Film Festival (BUFF) returns to shake things up, expand the...

A treasured community asset

The Bowlo, a treasured community asset in Bangalow very popular with young families, is now destined to be part...

Rally against a waste incinerator for Casino

Residents Against the Richmond Valley Incinerator (RAVI) and community members have planned a rally for tomorrow to alert the community about the issues surrounding waste incinerators and the problems they bring.

What is the value of a DCP ask Kingscliff residents

Locals 'disappointed' after Tweed Shire Councillors approve the change of use development application for eight flats at the Paradiso tourist accommodation facility in Kingscliff from ‘tourist’ to ‘residential’ accommodation. 

So many strings to his bow

Andy Jans-Brown is a multidisciplinary artist, who works through the mediums of film, music, theatre and art. As a...

One of the most surprising parts of the recent research into Gen Zs with Down Syndrome was just how technologically adept they were.

Brought to you by Cosmos Magazine and The Echo

More research has come from a long running project in Queensland that reinforces the high quality of life people with Down syndrome are experiencing and can help block misinformation given to prospective parents.

The Down Syndrome Research Program is in its 40th year.  The team at the University of Queensland believe it’s the oldest, most complete study of its kind anywhere in the world.

And it’s often throwing up surprises.

Associate Professor Rhonda Faragher, the director of the research program, says one of the most surprising parts of her recent research into Gen Zs with Down Syndrome was just how technologically adept they were.

“The participants are so tech savvy. They’re right into it,” she told me.

“Our hypothesis is that this is a very socially included generation … they’re around people who engage in social media, who use technology in all sorts of ways. So, for them, it’s natural. It’s a part of how they are engaged in the world.”

This included Alana Pettigrew, one of the research assistants in the project who also has Down Syndrome, who joined Rhonda and I for a zoom interview.

Pettigrew told me about her experience working as a research assistant. After applying via a video, she was one of the four research assistants hired to help the team find and interview gen Zs with Down syndrome.

“I liked to talk with lots of different people in the room,” she says. “I like being myself.”

In particular, she was able to help the team communicate with a person who was less verbal by making two fists and directing the participant to point at either hand.

“I used my hands – one for yes and one for no.”

Down syndrome – also known as trisomy 21 – is a set of characteristics which occurs in people with an extra chromosome 21. Faragher points to the transition in our community about the quality of life people with Down Syndrome are experiencing.

Read more: Using games to probe attention deficits

“In the 1960s, for example, when they lived in institutions, there weren’t heart treatments like Alana had and there weren’t antibiotics to help people, but they were also deprived social environments. These children, they died in their teens – that was the life expectancy. Most didn’t talk, it was unheard of that they would read,” she says.

“Now it’s no longer the remarkable few who learn to read, it’s more unlikely that they won’t. We’ve just learned so much more about what we need to provide in the social environment that allows people to thrive.”

Faragher’s recent research has zoomed in on a particular group of people – Gen Z or ‘zoomers’.

The research, which has finished collecting data but has not yet been published in a peer-reviewed paper, interviewed 26 people from around Australia aged between 18 and 30. There were three main research questions: What common aspects typify life for Gen Zs with Down syndrome?  What do Gen Zs with Down syndrome value in their lives?  What factors affect their quality of life?

“What our data has confirmed is that our Gen Zs are having a really great life. Their quality of life – a life of meaning and purpose – is rich, and they’re really enjoying it,” says Faragher.

Unfortunately, despite the technological and societal advances, Faragher suggests that many people still see those with Down syndrome as having a lesser quality of life.

“There are people who feel pity for people with Down syndrome. They think that they can’t have a full life,” she says.

“I do think that the world is getting to be a better place for people with Down syndrome and we have seen that through our research. There’s still a way to go, of course.

“Advocacy and social inclusion are leading to these improvements.”

“People didn’t like being presumed incompetent. That really riles … there’s a presumption by some in the wider community that people shouldn’t be out without a support worker or family member.”

Faragher uses the example of someone trying to hire an Uber.

One participant communicated exclusively through his smart phone, either typing out messages or showing pictures, highlighting how important technology is for the zoomers in the study.

Despite this technological ability, Faragher told me that getting the new research assistants signed up to the payroll was one of the biggest struggles, because the University’s automated onboarding software was virtually inaccessible.

This research is particularly important due to the increase of prenatal testing and subsequent abortions if a foetus is diagnosed with Down syndrome.

In 2021, Down Syndrome Australia conducted a survey of 320 parents who had a child with Down syndrome. They found that 42 per cent of prospective parents were given misinformation about life with Down syndrome and 49 per cent felt pressure from health care providers to terminate their pregnancy.

Very rarely are new parents given contacts for people with Down syndrome, or organisations that could provide information. Instead, doctors and other health professionals are tasked with providing this in a very short space of time – potentially swaying the parents one way or the other.

“We know that they’re not getting the right information,” Faragher says.

“If doctors have an unconscious bias because they have never met a person with Down Syndrome and their memories are from when they did their training decades ago … parents are going to make a decision that might not be the decision they’d make if you had a view of what adulthood is like for people with Down Syndrome.

“And that’s a life that gives joy and pleasure to people around them.”


This article was originally published on Cosmos Magazine and was written by Jacinta Bowler. Jacinta Bowler is a science journalist at Cosmos. They have a undergraduate degree in genetics and journalism from the University of Queensland and have been published in the Best Australian Science Writing 2022.

Support The Echo

Keeping the community together and the community voice loud and clear is what The Echo is about. More than ever we need your help to keep this voice alive and thriving in the community.

Like all businesses we are struggling to keep food on the table of all our local and hard working journalists, artists, sales, delivery and drudges who keep the news coming out to you both in the newspaper and online. If you can spare a few dollars a week – or maybe more – we would appreciate all the support you are able to give to keep the voice of independent, local journalism alive.


Please enter your comment!
Please enter your name here

Firefighter injured battling large blaze in vehicle scrap yard

Fire fighters battled explosions and large blaze in a vehicle scrap yard at Trenayr, north of Grafton on Monday.

World AIDS Day – time to end transmission

Over 40 million people have died worldwide of AIDS over the last 41 years and ending the transmission of HIV is the aim of a specialist taskforce being set up by the Federal Government announced today on World AIDS Day 2022. 

Climate change a threat to local Gondwana rainforest mountain frogs

A new Southern Cross University study predicts that two species of mountain frogs located on the NSW/Queensland border are on track to be extinct by 2055.

Ballina council to kick-start waste reduction policies and projects

The Ballina Shire Council has voted unanimously to adopt a newly drafted policy aimed at waste reduction.