Disability research with people: participation and impact
A new era for disability research in Australia
By Rachel Taylor · Originally published 28 June 2017
Original article
I was probably a bit starry eyed when I started my PhD almost three years ago. I believed academics uncovered important knowledge and found the ‘answers’ that society was seeking – delving into the trickiest and most critical of problems, putting forward innovative solutions, moving society forward.
Focusing on social innovation in the Australian disability sector, I couldn’t wait to make a difference through my own efforts in academia.
However, after getting started on my PhD at the University of Tasmania, I quickly came to realise that a lot of research in the social sciences (particularly in the areas of organisational and management studies) lacks a tangible result. There’s a well-known doctrine in academia: “Publish or perish”. Researchers are driven to publish academic journal articles in order to climb the career ladder; and yet very few people beyond the corridors of universities are likely read or make use of their work.
For example, when I conducted background research for my PhD project, I read widely on topics such as non-profit management and social innovation. As I read article after article, I pondered: What was the ‘real world’ need that led to this research being conducted? How were stakeholders involved in the research process? And, how is this research useful? In my particular field, this last question could mean how can the research findings be used to create better management practices within disability service providers, or improve the design and delivery of disability services?
I’ve realised, and many others have too, that real world impact doesn’t seem to be a big priority for much academic research, and this has been the norm for decades.
However, there was a strong sign that change is on the horizon with the Australian Research Council (ARC), the government body that funds academic research in Australia, recently announcing that it will soon require researchers to report against a range of community engagement and impact indicators. The ARC’s aim is to shift researchers’ priorities to a greater focus on community needs ‘in a context of partnership and reciprocity’.
This is a timely shift, and I believe that with academics forced to start looking outward rather than inward, it presents an exciting opportunity for more ground-breaking research in the disability sector.
The disability sector is facing unprecedented change with the rapid emergence of a national disability marketplace under the NDIS. Whether we’re looking at the experiences and challenges faced by individual consumers, families, service providers or the broader community, a lot of important issues need to be better understood in order to improve service delivery. This is where collaboration between researchers and ‘real world’ people comes in.
Knowledge building is a shared process. In many respects, it can be as simple as a conversation between different people. However, these exchanges must be inclusive if it is to bring about real community impact. Research should involve individual consumers and disability service providers sharing their knowledge, perspectives and ideas. Equally, researchers should share their research findings directly with the sector, making them widely available and getting feedback on what it all means in real terms (with publishing journal articles a secondary concern).
How can we engage in this collaborative process? I don’t have a neat and tidy answer, but I do know that I am incredibly lucky and grateful to have worked closely with two organisations during my research project: Mosaic Support Services in Hobart and Arts Access Victoria in Melbourne. Each of these organisations hosted me full-time for approximately four weeks so I could conduct interviews with individuals and groups, and also observe firsthand their day to day internal operations and organisational culture. I learnt so much from speaking with their frontline staff, consumers, managers, and anyone and everyone who wanted to chat with me about their ideas and concepts on social innovation in the disability sector.
I’ve called what I did at those two organisations a ‘Researcher Residence’. I think this approach has lots to offer researchers in terms of revealing different perspectives and moments in time. It enables us to grapple with the complex realities of processes that don’t have easy answers, and that need open dialogue with lots of different people to help make sense of it all.
Moving away from the old, detached ways of ‘researching about’, and now learning how to ‘research with’ is a challenging but rewarding experience. I’m happy to say that I’m starry-eyed again, because I hope that more opportunities for collaborative research are just around the corner for those of us interested in creating knowledge together.
Lastly, because it is a two-way process, I invite anyone who has an interest in collaborating on new and exciting disability-related research projects to share your ideas below, or feel free to email me directly: [email protected].
Rachel Taylor
Rachel is a PhD candidate at the Australian Innovation Research Centre (AIRC) at the University of Tasmania in Hobart. Through her research, she is interested in finding out how non-profit organisations in the disability sector can operate in ways that make a significant and lasting impact.
Clickability editorial update: October 2026
Ask what taking part means before agreeing
Find out who is conducting the study, what information will be collected, how it will be used and what choices you have about participation. Request an accessible explanation of risks, time, costs and any payment. Check whether declining or withdrawing affects your services, and ask for clarification if the answer is unclear.
Ask how you will hear the findings and whether you can influence the research question. NHMRC’s human-research ethics guidance is a current reference for researchers and institutions. A useful conversation is not a substitute for informed consent.
Separate research participation from access to support
Do not invite people in a way that suggests they must cooperate to keep a service. Confirm applicable ethical review, privacy arrangements and how access requirements are met. Agree with researchers how findings will be returned in usable formats. ARC’s assessment history gives context for the original policy announcement, not proof that a particular study will improve your service.
Questions readers ask
Does a researcher residence automatically establish informed consent?
No. Appropriate ethics, information and consent processes still apply. Official guidance
Find providers who explain choices clearly
Compare Clickability providers and ask how they obtain consent and communicate service changes. Choose support that respects your privacy and preferences.