Two of the leaders of the Disability Research Network Professor Simon Darcy, from the UTS Business School, and Professor Bronwyn Hemsley, from the Faculty of Health discuss the Network and how it seeks to improve the lives of people with disability and their communities.
Professor Simon Darcy
Simon: The Disability Research Network kicked off in 2018 with discussions amongst like-minded people in different faculties and many of us have been working to promote disability research for a fair while and are very passionate about it for personal and professional reasons. Yet, at the same time, many of us often feel quite isolated so the Network has been a great way to break that isolation and lift us up and connect with others.
It really gathered momentum at the end of 2019 with support from the Centre for Social Justice and Inclusion, and together with the Design Innovation Research Centre we bought together people from across the University for a three-day workshop exploring the potential of establishing a research entity.
We’re part of the global movement around the International Convention of the Rights of People with Disabilities. Creating the network has also fitted in really well with the policy development around the NDIS and the recently launched 2021-2031 Australian Disability Strategy.
Professor Bronwyn Hemsley
Bronwyn: Our Network is important, as all disability research is collaborative. It has to be to be successful. And it’s always multidisciplinary. I can’t think of any of my work that has been just speech pathology.
Simon: I remember having a conversation with the University in 2015 about moving forward with a similar idea but being told that “disability is health”. But I looked at myself in the mirror and thought, no that’s not right. And it can’t be right because while health is incredibly important in all its aspects, we [people with disability] have the same dreams and desires as everyone else.
Whether that’s in the arts, construction, robotics, design, or information technology, it’s about whatever your passion is and what’s important to people with disability from a research and policy perspective.
Disability research is truly across all disciplines. If we’re exploring ‘wicked problems’, that’s a matter of complexity. Disability in its very being is complex.
Most people see someone like me who’s a power wheelchair user, and think that’s a disability. But it’s so much more than mobility – it’s communication, vision, hearing, mental health, or people with an intellectual disability. It’s also about how the type of disability and the support needs that the person with disability requires, so they can access all parts of society and be included.
Bronwyn: Once we got everyone interested in disability research together – and there’s a lot of people involved at UTS – we agreed on four connecting major themes in our work. These themes reflect the priorities of people with disability: inclusion and participation; social justice, diversity and equity; health and wellbeing; and enabling technologies.
We’re not an institute or research centre. We don’t sit by ourselves.
Disability has got to be embedded within every research centre at UTS, within every group doing research. We need to always think about including people with disability in our research.
- Professor Bronwyn Hemsley
We need to do this better and have research investigators with disability, not just participants. We need to have them on our teams and include capacity building in that to empower true inclusion within the University for the future.
Simon: Regardless of the faculty or discipline that our researchers are in, and they come from across UTS, we’re all focusing on improving aspects of society to make a real difference. We’re as interested in engagement with all sorts of stakeholders and bringing people into the university to make sure disability is also part of our teaching and learning across the University.
Bronwyn: With NDIS and other disability research funds coming along, we can respond to that in a genuine way. We’ve engaged, we collaborate with people with disability and can do this well.
We can go forward with funding applications and turn it into employment for people with disability in our research teams. Sometimes that has been the edge in grant success. It has been where we’re one of the few applicants saying we’re employing a person with disability within the research.
In the network people are so generous with knowledge and time. Always willing to help and give feedback or contribute as they can. There’s not talk about ’what about this faculty’, or where’s the funding going, it’s about what’s the strategy here and how can we help each other. I like that.
We need to translate what can sometimes be complex research concepts into very practical engaged policy outcomes or solutions for the real world. That involves understanding the different stakeholders, service organisations and government agencies.
- Professor Simon Darcy
Bronwyn: Members of the Disability Research Network recently worked with me on the Co-Creating Safe and Enjoyable Meals project, funded by NDIS Quality and Safeguards Commission that illustrates these points. It focussed on people with swallowing disability and we had input into NDIS legislation and safeguarding policies as we went along.
The Network’s collaboration with 10 external organisations had some fantastic outcomes. We’ve helped to make meal times safer for people with swallowing disability across Australia and build it into the legislation and standards.
That kind of collaboration takes time and relationships. It doesn’t come without trust so you need to build up relationships to get that.
Simon: In environmental science, there’s a thing called helicopter ecology where you can fly-in and fly-out as experts, not really making a difference. We’re sick of that in the disability sector, researchers who do their research but don’t given back to the community.
We’ve completed a NSW Government community development project about beach inclusion in several local government areas. It has made people across many disability types feel more comfortable on the beach or in the water – a place that’s been terribly exclusionary at times for people who don’t feel they have the perfect ‘look’ to be accepted at the beach.
Now you go for a wander around some of these precincts and people are openly engaging with anyone who even looks like they’ve got a disability. Some of it’s about infrastructure but most of it is about the attitude of others and being familiar in seeing and interacting with people with disabilities.
Bronwyn: Almost everywhere we look, people with communication and intellectual disability are excluded from participating in research. People who have trouble talking, listening, reading or writing, they won’t be in the research. It’s important to focus on their needs as they may need to have tailored and customised supports.
It’s important that everyone at UTS who’s running research think about their participants and if they really do represent the broad diversity of the Australian population. If they have trouble including those populations they can ask us because we’ve been doing it for a long time and can help.
Find out more about the UTS Disability Research Network:
Visit the website
Follow on twitter @UTSdisability
Email UTSdisability@uts.edu.au