How inclusive research is forging stronger policies to protect young Australians with disabilities
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Meet the UQ researcher determined to create a safer, more inclusive society via research for the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.
Researching for better rights for young Australians with a disability is a cause close to Dr Kathy Ellem’s heart.
She has raised a young man who lives with a disability, and she knows firsthand the challenges that he has faced on his journey from boy to young adult.
Challenges that, with the right policies in place, could be avoided.
The Senior Lecturer at UQ’s School of Nursing, Midwifery and Social Work is seeking to address the institutional barriers that impede on the lives of young Australians with disability, spanning across a range of essential services.
This is no small task, but one that Dr Ellem is determined to face head-on together with Associate Professor Paul Harpur from the TC Beirne School of Law, and her team of co-researchers who have a lived experience of disability.
Young adulthood is a time of intense growth – involving finishing high school, seeking out jobs or further education and training, finding independence, and for some, moving out of home and away from family support.
But according to Dr Ellem, young Australians with a cognitive and/or intellectual disability find that these challenges are magnified.
"When you have a cognitive disability, there are a whole heap of things that you need to traverse that aren't as straightforward as it is for other young people to do," Dr Ellem said.
"There are young people with very complex needs, who perhaps aren't able to verbally articulate their needs or wants. And when they leave school – for example if they've been in special school – it becomes a very stressful time for themselves and for their family."
Dr Ellem's project explores the issues affecting young Australians with a disability, and her research will be included as part of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.
Her research includes the interactions between people with cognitive disability and criminal justice systems (e.g. police), education, health services, independent living and self-advocacy.
The research also explores the experiences of young people with cognitive disability who are LGBTQI+, from culturally and linguistically diverse populations and First Nations communities.
"What are the preventative strategies we can do around abuse and neglect? And what can young people teach us about that? What are their experiences of this across different fields?
"I’ve looked at previous recommendations from other government papers around abuse, and then what young people are experiencing, and what practitioners are saying about all those things. Our findings will help inform the final report and recommendations of the Royal Commission."
For Dr Ellem, the journey matters just as much as the destination, and inclusive, respectful and collaborative research is integral to her approach.
“I have a particular interest in inclusive research methodologies. This means research which allows, as far as possible, people with cognitive disability or impairment to be directly involved in telling their own story,” she said.
In what she calls ‘life story interviews’, Dr Ellem engages with participants according to their communication style and the sensitivities of the issues being discussed.
"This study includes a group of co-researchers with cognitive disability and a First Nations man with a physical disability.
"We meet for workshops where they give their insights, and they are paid for their work as part of the research team."
Illustration credit: Aleks / Adobe Stock
Dr Ellem hopes that the co-researcher participants will not only have the opportunity to share their experiences, but also gain a unique skill set that will allow them to continue to explore the issues that matter to them.
"A lot of our participants haven't done research before. I get to teach them how to research and how to analyse data," Dr Ellem said.
"This is done with the goal of building participants’ research skills so that they can present themselves as researchers in their own right. I hope they will go on to research other things that are important to them as well."
The findings from Dr Ellem’s research were presented to the Royal Commission in late 2021, and will help bring inclusivity to the forefront of government policy.
"To me, it's about valuing people's lived experience, and their lived expertise. Because typically, many people with cognitive disabilities aren't seen as experts in their lives. But they are experts,” she said.
“People with disabilities matter, people with cognitive disabilities matter. And they have something to say. And as researchers, we need to be able to get people's voices because they represent the majority of people with a disability.
“But it's also people with cognitive disability who often have the least voice in the sector and in research, and it's about time they join the academy, and we learn from their lived expertise.”
For Dr Ellem, this project stemmed from wanting to ensure that young people with a disability, like her son, had their voices heard in this commission.
“The thing that has come across in the data is these young people’s ability to survive, and to have the courage to tell their story because they want to make a difference and they don't want other young people experiencing the same things that they have had.
“I'm a parent myself of a young man who would fit the study. He's in the age bracket and he's had experiences of abuse. But obviously, I can't interview him.
“And so as a parent, I want a better outcome for my son. As he grows up, I hope that this research will lead to positive change, so that he can have all of the same opportunities as anyone else.”
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