Online Symposium Sydney

Dr Ellen Fraser-Barbour, Dr Michelle Tso, Professor Karen Fisher and Professor Sally Robinson.
Introduction by Professor Jackie Leach Scully. 

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Acknowledgement of Country

We would like to acknowledge that we are hosting this symposium from the lands of the Bedegal People (the UNSW Kensington campus). 

We also acknowledge the Traditional Custodians of the various lands on which we all meet today and pay respects to Elders past and present and celebrate the diversity of Aboriginal peoples and their ongoing cultures and connections to the lands and waters of NSW.
 

Format 

• A video message from Disability Matters Project Lead, Dan Goodley
• Introduction by DIIU Director, Professor Jackie Leach Scully  
• Our speakers: 

1. Dr Ellen Fraser-Barbour 
2. Dr Michelle Tso 
3. Professor Karen Fisher and Professor Sally Robinson 

• 5 minute comfort break
• Questions from the audience
• Close and thank you

Housekeeping

• Having cameras on is completely optional
• If you wish to access English live captioning, you can turn this on by clicking the Live Transcription option in the meeting toolbar below
• The symposium will be recorded and made available on the Disability Matters website 
• All papers and speaker materials and will be made available on the website, a copy of this PowerPoint will be available after the event as well 
• Please direct questions to the Q&A box in the toolbar below, these will then be read out loud later on
• If you feel you need to leave the session at any point for any reason you are free to do so

A video message from Disability Matters Lead, Dan Goodley

Speaker: Dan Goodley

Disability Matters is a major six year pan national program with disability health and science research, and it's funded by a Wellcome Trust discretionary award. I'm Dan Goodley, I'm the principal investigator and I work in the iHuman Research Institute at the University of Sheffield. Now, a key ambition of Disability Matters is to make disability the driving subject of research and scholarship. And one element of our program promotes scholarship that demonstrates the contribution of disability studies to a host of fields and disciplines. So we're running a number of short and accessible online symposia hosted in Canada, the UK, India, Singapore and Australia, over the next five years. This one, held in the University of New South Wales is a welcome addition to our Symposia Series. So thanks to all the speakers, the participants and organisers. And of course, a big thank you to our Co-investigator Professor Jackie Leach Scully.
 

Welcome and introduction by Professor Jackie Leach Scully, Director of the Disability Innovation Institute UNSW Sydney

About Professor Jackie Leach Scully: 

Jackie’s research interests include several topics across bioethics, but her work is particularly known for a focus on ‘disability bioethics’, specifically looking at selective reproductive technologies, genomics, prostheses and assistive devices, people with disabilities in disaster and humanitarian response, and concepts of vulnerability and justice. In addition, she has a strong focus in feminist bioethics and is currently Editor in Chief of the International Journal of Feminist Approaches to Bioethics. She is a Fellow of the Academy of Social Sciences and of the Royal Society of Arts of the UK, holds an honorary professorship at Newcastle University, Professor of Social Ethics and Bioethics at UNSW and has been an activist for disability rights for over 30 years.

About the DIIU

The UNSW Disability Innovation Institute is a world first initiative, focusing on disability research, education and knowledge exchange. Its team members take pride in undertaking work that's radically inclusive, and that crosses disciplinary boundaries. The Institute's approach is to see disability not as a problem to be solved, but an integral part of the human condition to be encountered and engaged with rather than feared. 

We are proud to be a part of such an important project, thank you so much for joining us online. 

It is with great pleasure that we introduce our speakers for today’s symposium.

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Presentation One: Dr Ellen Fraser-Barbour 

Biography: Dr. Ellen Fraser-Barbour, Policy and Research Leader - I bring an embodied approach to knowledge given my combination of lived, academic and professional experience. I am passionate about work to do with preventing and confronting discrimination and harm against people with disability.  Research can be a valuable social justice tool, offering ways for disabled people to be critical thinkers and heard and listened to.  

Lived experience knowledge honoured in inclusive research 

[Slide: Acknowledgement]

I would like to begin by acknowledging the traditional custodians of the land on which I am on today, which is the lands of the Kaurna people in Adelaide – South Australia. 

I’d like to take a reflective approach in my talk today and leave you with a call to action for you to consider in your own quest to ‘do’ inclusive research well and meaningfully. 

[Slide: Lived experience as central to inclusive research]

Inclusive research methodologies are fundamentally about centering the lived experiences of people with disabilities, not just as participants but as key thinkers, analysts, and communicators in the research process. Lived experience-led research is essential to social justice movements because it disrupts the status quo by shifting the focus to those who have direct, personal insight. Inclusive research methodologies will often include words like co-research, co-design, or co-production.  

Inclusive research is fundamentally concerned with the idea that people with lived experience are not merely collaborators or contributors supporting the ideas that able bodied researchers and politicians have – but instead, have actual authority and leadership in the framing, questioning and analysis.

[Slide: Why Lived Experience Leadership Matters in Academia]

I am always questioning how we make sure inclusive research is led by people with lived experience.  How do we make sure that those most affected by injustice, are in control of the narratives, the framing, our understanding of words and how we communicate this to people who can effect change? 

People with lived experience have an understanding of social issues, grounded in the lived realities that go beyond what can be gleaned from books or allyship. For lived experience researchers - the personal is indeed political. 

Inclusive research is not a single method – but rather a heap of different methodologies. Often it means co-research, co-design, or co-production. But I struggle with the idea of ‘co’ doing research when it is abled bodied researchers setting the agenda and bringing lived experience in second.  Power inequities persist.   

For me, good knowledge requires that we are not just collaborators or contributors to non-disabled peoples ways of thinking about the issues that affect our community.  

[Slide: Academia: Oppression and Social Progress]

We must acknowledge that academia has roots in colonialism and has historically been a site of violence and oppression against marginalized communities. Much like how men historically produced research about women, disability research is still often conducted by those without lived experience. This has caused significant harm, and we must recognize this history as we navigate our work today.

Conversely, academia also has the potential to be a space for social justice, progression, and learning. There are extraordinary scholars who deeply consider how to move toward a future where marginalized communities can live free from oppression and harm. Connecting with such scholars has been crucial in sustaining my own academic journey, and it reinforces the idea that academia can indeed be a force for good.

[Slide: Whose Viewpoints Are Heard in Disability Research?]

As researchers, whether we have lived experience or not, we operate within a hierarchical system that often positions us as outsiders looking in—gathering, theorizing, and reporting on the experiences of others. But for those of us with lived experience, we are both the observer and the observed. We are often the people who are ‘mined’ for information and we often willingly provide – because we desperately want change and social progress.  But there is also the risk of feeling that our input feels tokenistic or dismissed   

While we can’t wave our magic wands and eradicate oppression or discrimination tomorrow – I think we can as researchers, can be mindful of power and privilege.  

[Slide: Tensions for lived experience researchers working in inclusive research spaces]

If we truly want to support lived experience leadership in inclusive research, we need to be aware of some of the tensions that exist for our colleagues who have lived experience:

1. Exploitation: There is a real risk that the work of lived experience researchers is used to advance the agendas of those who do not fully understand or appreciate the complexities of disability. This exploitation is often tied to power inequities within institutions.
2. Privileging Voices: Historically, research has pathologized human diversity, using deficit-based language that views differences as problems to be fixed. Although our understanding of ethical research has evolved, harmful stereotypes and stigmas persist, often in subtle ways. Lived experience researchers are on the front lines, constantly working to counteract these entrenched biases.
3. Emotional Labor: The demands of emotional labor are significant for lived experience researchers. We constantly navigate microaggressions, inaccessible environments, and the pressure to conform to ableist norms. This work is not just emotionally taxing; it can lead to burnout, as we are unable to disengage from the issues we study and advocate for.

Burnout in this context goes beyond fatigue—it’s the overwhelming sense of hopelessness that comes from constantly battling microaggressions and ableist structures. The personal is political for lived experience researchers, and this means we cannot simply step away from the issues we face.

[Slide: Solidarity, and allyship in inclusive research methods:]

Stella Young, a brilliant disability Australian advocate, once said, “Smiling at a flight of stairs never made them disappear.” This quote encapsulates the tension we face: the exhaustion of confronting ableism, but also the determination to keep building relationships and pushing for change. 

For me, inclusive research methods holds at it’s heart two core basic elements. First, our opportunities for relationships between colleagues and researchers with and without disability who who have a shared goal for confronting discrimination.  Second, our willingness to intentionally listen, value and amplify knowledge by those with lived experience of the issue we are researching. 

[Slide: Solidarity and what this means in inclusive research:] 

We all share the desire of wanting a better world for disabled people right – and it can be easy to feel disillusioned, discouraged and criticised for not doing enough. 

With this in mind – I’d like to  put forward some of my ideas for what  makes inclusive research meaningful.

• We can’t eradicate ableism - but we can ask questions:
  Reflect on our own privileges, our backgrounds, our values, where our ideas about productivity and success come from.  I think about my own background and the fact that I am white, middle class, I come from a well educated family – and I know that this has allowed me to complete my PhD.  
  • We can all think about how easily we accessed this space today, how our voices are received, and how financial stability may shield us from some challenges. Recognizing privilege requires awkwardness and discomfort. 
     
• Nurture relationships with people who have lived experience:  
  • It’s easy to focus on the task and outcomes in research.   At times that can limit time and space to build relationships with people in community who have lived experience.   If we only talk to people with lived experience for the purpose of data collection – we are doing a great disservice. 
  • People with lived experience must be involved in grant writing, the thoughtful analysis of research (this is often where we frame our words and language and understanding on an issue too). We need long-term projects that allow for meaningful contributions from researchers with intellectual disabilities, for example, to challenge the notion that they cannot engage in higher-order thinking.
     
• Solidarity and support for disabled researchers:
  • Lived experience researchers draw strength and wisdom from their communities. These connections are crucial for articulating visions of social justice and for sustaining the emotional labor required in our work.
  • There will also be times though – when it is necessary to withdraw. Where rest is not a luxury—it’s a necessity for survival. We must support scholars to take their time, slow down, and acknowledge that our current productivity culture is inherently ableist.
  • Amplify Thought work by disabled people: Seek out and engage with creative works from the disability community. It’s our responsibility to be informed and to amplify these voices.

In closing, it’s up to all of us—able-bodied and embodied researchers alike—to challenge ableist norms in academia. By doing so, we can create a more inclusive, just, and vibrant research community.
 

References

Cambibatch, A Rest and resistance: sleeping as a revolutionary act | The Justice 

Hersey, T. (2022). Rest is Resistance: A Manifesto. Hachette UK. 

Hochschild, A. R. (2012). The managed heart : Commercialization of human feeling. University of California Press.

Kafai, S. (2021). Crip kinship: The disability justice and art activism of Sins Invalid. arsenal pulp press. 

Piepzna-Samarasinha, L L (2021)  "Still Dreaming Wild Disability Justice Dreams at the End of the World," Disability Visibility: First-Person Stories from the 21^st Century (Ed. Wong, A)  

Price, M. (2011). Mad at school: Rhetorics of mental disability and academic life. University of Michigan Press. 

 

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Presentation Two: Dr Michelle Tso 

Biography: Michelle Tso has a teaching background in high school education and recently completed her PhD thesis on the peer interactions of high school girls on the autism spectrum. She works as an Inclusive Research Development Officer at the Disability Innovation Institute and as a post-doc Research Associate with GeneEQUAL. Her research interests are in inclusive research and span education and health, particularly supporting the wellbeing of students and adults on the autism spectrum or with intellectual disability.  

I’m Michelle. I am an Australian born Chinese woman in my mid 30s. I have medium length black hair and I am wearing a white turtleneck. My preferred pronouns are she/her.   

Thank you so much for having me.  

I would also like to acknowledge the traditional custodians of the land that I currently reside on, the Darramurra-gal people and the traditional custodians of the land in the various places you are coming from. 

Today, I would like to share my experiences with inclusive research methodology as an early career researcher and through this explore the impact of this form of research and the contributions of disability studies to other fields. I will be sharing about two projects to highlight the similarities and differences in inclusive research projects and methodologies. The first project is my PhD research exploring the peer interaction experiences of high school girls on the autism spectrum in the field of education. The second project is work within the GeneEQUAL inclusive research program, specifically the New South Wales (NSW) Have a Say project which was about understanding the experiences and preferences of people with intellectual disability accessing genetic health services. For each, I will discuss the approach, process, and impact.  

Inclusive research with people with disability means they are active actors and co-creators of knowledge in research (Strnadová & Walmlsey, 2018; Strnadová et al., 2020). This differentiates it from other research which may involve people with disability as participants. Inclusive research is characterised by a focus on the wellbeing and inclusion of people with disability, exploring issues of importance and relevance to them, acknowledgment of their lived experience expertise and research input, and the production of information for change and advocacy (Strnadová et al., 2022). People with disability can be involved in inclusive research to varying levels, ranging from more academic researcher driven to people with disability driven as seen in this adapted figure from den Houting (2021).  

The level of involvement people with disability had in my PhD is representative of the consulting level of inclusive research as my advisory group of four females on the autism spectrum and one family member provided feedback on the methodology of the research. The rationale for this level of inclusive research, was though I have personal experience of being a family member of a person on the autism spectrum and had experience working with children on the autism spectrum and their families, the PhD was my first experience in leading an inclusive research project. Additionally, the consulting level of inclusive research fits within the parameters of the PhD program, as greater involvement from people with disability may challenge the university’s requirement of a PhD being completed through independent thought and research.  

In comparison, the GeneEQUAL Have a Say project represents a co-produced level of involvement where academic researchers and people with disability have equal power and work in partnership from the start of the research. Julie Loblinzk OAM is a co-researcher with intellectual disability and investigator on the project from its inception. People with intellectual disability were also part of the project’s Advisory Committee of stakeholders as well as co-production workshops which were held with self-advocacy organisations. This level of inclusive research is enabled by the extensive research relationship between Julie Loblinzk and Professor Iva Strnadová on the team spanning over a decade and their long term relationship with grassroots self-advocacy organisations, as well as funding for the sustained engagement of people with disability for co-produced research.  

The practical processes of the inclusive research methodologies from my PhD and working on the GeneEQUAL team varied considerably due to the scales and contexts of the projects. These processes will be tightly summarised due to time. However, I would be remiss to not emphasise from the start that underlying these processes is considerable time and engagement spent ensuring that the inclusive research is conducted in an ethical manner to support the wellbeing and inclusion of people with disability including understanding their needs and preferences and developing accessible information.   

For my PhD, I met with the 5 advisors online on their preferred platforms as it took place primarily during the start of the Covid pandemic in 2020. I met with them all individually apart from one daughter-mother dyad who I met together, and the number of meetings was based on advisors’ availability and interest. I met advisors between 3-8 times over the course of the project. Advisors’ feedback was gathered and applied to ensure the methodology, particularly the arts-based methods and semi-structured interview protocol were appropriate and relevant for the intended participants of high school girls on the autism spectrum. All advisors’ feedback was accepted except where there were conflicting recommendations. In those cases, where possible a compromise was made, or the recommendation was which more appropriate for participants or more strongly preferred by advisors was applied.  

Though their feedback was comprehensive and detailed, I will just share one particularly memorable point which was about this question of “Have you ever felt lonely or excluded from a group?”. Though this interview protocol question is from an existing study and research has indicated this topic as being of concern for the population, advisors had very strong emotional responses to the question ranging from discomfort to being concerned that participants would have a panic attack. Their collective negative response to the question lead to it being replaced by this question “Have you had negative experiences at school?”. This question was developed through rounds of feedback and allowed participants greater choice in how to answer about a sensitive topic. Without advisors’ critical feedback, the research would have been less sensitive to the needs of high school girls on the autism spectrum causing a greater risk of distress and potential undermining of research rapport.   

I also met with advisors who were interested to look at accessible summaries of the study’s findings to hear their thoughts on participants’ experiences and their recommendations as to how it should be disseminated. Despite it being disheartening to hear how advisors’ and participants’ negative experiences of peer interactions and school life resonated with each other, the advisors appreciated hearing what came from the research, and it was a gratifying conclusion to the project in being able to share with advisors the culmination of our work together.  

For the GeneEQUAL project, the inclusive research processes are particularly evident in the co-production workshops, Advisory Committee meetings and team meetings. For time, I will focus on the co-production workshops. Following interviews with 19 people with intellectual disability and 9 of their support people such as parents and partners, co-production workshops were held with self-advocacy organisations to design an educational toolkit for health professionals based on the interview recommendations. In total, there were 4 co-production workshops across metropolitan and regional NSW through the life of the project where people with intellectual disability contributed their feedback and made choices related to the production of videos and booklets for the educational toolkit. I will also share one memorable point from the inclusive research methodology process, which was feedback from people with intellectual disability who wanted to know how to complain if they had received poor health services. This led to the creation of these specific pages in the Easy Read booklet “Tips about genetic health care” outlining steps of how to complain about health services. This is a particularly meaningful addition to the resource considering the research evidence that people with intellectual disability experience discriminatory and inequitable health care (Ali et al., 2013).  

The impact of inclusive research methodologies on research are wide-ranging, however, I would like to draw attention to two different forms of impact – for the researcher and for people with disability involved in inclusive research. The impact of inclusive research in my PhD was felt on a very personal level. On one hand from the beginning of the project, I was cognizant of the value and advantages of inclusive research, of “nothing about us without us” (Aspis, 2000). However, I was and continue to be immensely grateful and moved by the honesty and vulnerability of people with disability sharing their often negative or traumatic life experiences through research to improve the lives of others. As an example, this slide has the body map produced by an advisor trialling an arts-based method capturing their high school experiences including their representations of self-harm. The value that advisors saw in the research topic and our mutual enthusiasm for improving the school experiences of high school girls on the autism spectrum also strengthened my resolve to complete the PhD.   

There can also be a mutual benefit for people with disability involved in inclusive research.  

I will share a short video now which presents the meaning and impact of co-production for academic researchers and people with intellectual disability themselves in reflections for the GeneEQUAL project. The co-produced nature of the research has also contributed to the impact of the toolkit itself. The GeneEQUAL website recorded almost 10,000 visits from visitors from 53 countries which is one fourth of the world. The videos in the toolkit have also received over 85 hours of watch time and the Easy Read booklets have been viewed over 3000 times.  

It is hoped that these accounts of my experiences with inclusive research methodology as an early career researcher has shown the diversity and potential of inclusive research methodologies, its impact, and the contribution of disability studies to the fields of education and health. The topics, scale, level of involvement and processes of inclusive research with people with disability can vary greatly. Nevertheless, the value of having people with disability as active actors and co-creators of knowledge in research which explores issue pertinent to them and provides impetus for change remains the same across inclusive research (Strnadová & Walmlsey, 2018; Strnadová et al., 2020; Strnadová et al., 2022). 

Video transcript without timestamps 

Link to video: https://geneequal.com/genetic-resources/our-co-production-videos/ 

[Start of video transcript]

Speaker: Professor Iva Strnadová

So the GeneEQUAL project is about improving the genetic healthcare for people with intellectual disabilities that is respectful, accessible and inclusive.

Speaker: Dr Elizabeth Emma Palmer  

Which means that we're working in partnership with people with intellectual disability to hear what they think should be changed about genetic healthcare.

Speaker: Manjekah Dunn

So today's workshop was a really wonderful opportunity to hear the voices and the feedback from people with intellectual disability on some of the co-design and co-produced Easy Read resources that we made and the videos,

Speaker: Professor Iva Strnadová  

and we got some absolutely amazing feedback and really just some new ideas about what we can do further.

Speaker: Workshop participant  

I think this is a very, very helpful guide to help people with intellectual disability access the right health service for them.

Speaker: Workshop participant  

It is very easy to read. 

Speaker: Julie Loblinzk OAM

It's very easy to read, yeah. 

Speaker: Workshop participant  

It has all the key information, but it's a guide to talk with them, their patient, to talk to them at, like, the same wavelength as them, in an easy to understand conversation.  

Speaker: Manjekah Dunn 

People really valued having both videos that doctors should see both videos together to model some alternatives and strategies that they could use to make healthcare better.

Speaker: Dr Elizabeth Emma Palmer  

Another one of the key things that came out was that the videos are quite beneficial as well for people with intellectual disability and their support workers, just to highlight what is better healthcare practice and what kind of care that they should be receiving, and to empower them to get that care.

Speaker: Workshop participant  

I didn't realize just how much I conformed to the first video, and once I saw that, things have started to change.

Speaker: Workshop participant  

The doctor showed where to get support from, for when she wanted to meet somebody who has the same condition, and guided her and guided her and said, Oh, you can go to Facebook, and this is a website as well, and gave her information.

Speaker: Workshop participant  

And I appreciated that the doctor complimented Jess on a great question when it was asked. 

Speaker: Workshop participant  

It could be kind of like a compulsory training. 

Speaker: Dr Elizabeth Emma Palmer  

As a doctor, I realise now how little I was taught about how to be a respectful doctor and how to truly work in partnership and appreciate the lived experience of people with intellectual disability. So for me, personally, this project has been so eye opening, because it's shown how much needs to change about our healthcare, and the only way to change is to work together.

Speaker: Workshop participant  

I think it was great that we were all included in the process of the development of this book, because not only we gave out our advice on how we count the Easy Read, but it also benefited us too, in receiving that information about GeneEQUAL, it's about and how it can help us. 

Speaker: Workshop participant  

Just knowing we get the impact and how many people can help us today. 

Speaker: Workshop participant  

And this is what GeneEQUAL is about, just making things better you.

[End of video transcript] 
 

References  

Ali, A., Scior, K., Ratti, V., Strydom, A., King, M., & Hassiotis, A. (2013). Discrimination and other barriers to accessing health care: perspectives of patients with mild and moderate intellectual disability and their carers. PloS one, 8(8), e70855. https://doi.org/10.1371/journal.pone.0070855  

Aspis, S. (1999). A disabled woman with learning disabilities fights for her rights. In D. Atkinson, M. McCarthy, J. Walmsley, M. Cooper, S. Rolph, S. Aspis, P. Barette, M. Covenry & G. Ferris (Eds.), Good times, bad times: Women with learning difficulties telling their stories (pp. 73–86). BILD Publications. 

 den Houting, J. (2021). Participatory and inclusive autism research practice guides. Autism CRC. https://www.autismcrc.com.au/access/sites/default/files/resources/Participatory_and_Inclusive_Autism_Research_Practice_Guides.pdf  

GeneEQUAL. (2023). Have a say project. https://geneequal.com/geneequal/what-we-do/have-a-say-project/ 

GeneEQUAL. (2023). Videos: Our co-production videos. https://geneequal.com/genetic-resources/our-co-production-videos/  

 Strnadová, I., Dowse, L., & Watfern, C. (2020). Doing Research Inclusively: Guidelines for Co-Producing Research with People with Disability. DIIU UNSW Sydney. https://www.disabilityinnovation.unsw.edu.au/sites/default/files/documents/DIIU%20Doing%20Research%20Inclusively-Guidelines%20(17%20pages).pdf  

Strnadová, I., Dowse, L., & Garcia-Lee, B. (2022). Doing Research Inclusively: Co-Production in Action. DIIU UNSW Sydney. https://www.disabilityinnovation.unsw.edu.au/sites/default/files/documents/15661_UNSW_DIIU_CoProductionInAction_FA_Web.pdf 

Strnadová, I., & Walmsley, J. (2018). Peer‐reviewed articles on inclusive research: Do co‐researchers with intellectual disabilities have a voice? Journal of Applied Research in Intellectual Disabilities, 31(1), 132–141. https://doi.org/10.1111/jar.12378 

Tso, M., Strnadová, I., Danker, J., & O’Neill, S. (2023). Peer interactions of school-aged girls on the autism spectrum: A scoping review. Australasian Journal of Special and Inclusive Education, 47(1), 40–62.  https://doi.org/10.1017/jsi.2023.2 

 

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Presentation Three: Professor Karen Fisher and Professor Sally Robinson 

Biography: Karen Fisher is a Professor at the Social Policy Research Centre UNSW. She is a disability and mental health policy researcher in Australia and Asia.

Sally Robinson is Professor of Disability and Community Inclusion at Flinders University. She does research with children, young people and adults with disability about what helps them feel safe, well and happy at difficult times in their lives. Most of her work is done in teams that include people with disability as researchers as well as asking them for their views. She also works with governments and organisations about how to listen to the things that matter to disabled people. 

Everyday steps to prevent everyday harm

Preliminary findings from fieldwork with young people with intellectual disability and their support workers

Understanding everyday harm

• Consequence of interaction received as hurtful or harmful
• may cause people to feel insulted, degraded, excluded, rejected, threatened, silenced 
• intentional or unintentional 
• can have cumulative negative effect
• shaped and influenced by organisational policies, practices, rules, culture and wider social attitudes and norms 
   

Why use the term everyday harm?

• Accessible language for daily use 
• Reframes microaggression, emotional and psychological abuse to people who find the broader theories inaccessible
• Informed by recognition theory, focus on interpersonal harm and effect on quality of relationships, in organisational contexts 
• Opens opportunities for exploring repair and prevention of further harm in the relationship  

Preventing everyday harm

Young people and support workers: 

• Look at each other’s body language, listen carefully and notice if they or another person is upset or has become silent 
• Ask each other if they feel upset about something
• Work together to understand what has happened, what to do to make things better and how to prevent harm from happening again

Managers and organisations:

• Explain clear rules about good practice to prevent harm 
• Create an open culture that sets a good tone in the way people work together 
• Allow time and opportunities for young people and support workers to practise everyday steps
• Support young people and support workers to resolve harm they notice

Addressing everyday harm

Notice harm to self and others:

• Check in and observe: listen and pay attention to body language, ask how people feel, take time to build trust and communicate openly with each other 

Acknowledge that harm has occurred to yourself or someone else 

Address harm

• Talk openly about what happened 
• Encourage people in and out of the support relationship to work together to find ways to make things better
• Check during the process that the way of making things better is okay with people involved
• Check how organisational rules and culture might have caused harm. Can these be changed?

Making the future better 

• Addressing harm through the above steps also contributes to better practice for the future
• People learn to check in with each other, care, respect and appreciate each other

Organisational practice to prevent and address harm

Organisational practice is guided by:

• Rules of the organisation – policies, laws and guidelines 
• Culture of the organisation – informal expectations about how things are done and how people work together 

Good rules encourage and facilitate everyday steps

• When people understand the reasons for rules and see them as consistent with good culture, they are more likely to follow them
• Organisations check how rules impact people. They change rules that cause harm. 

Good culture encourages and facilitates everyday steps

• Everyone helps create good culture in different ways
• Good culture means being open to improving and doing things differently 
• Good culture encourages people to use everyday steps and speak up respectfully about poor practice

Next steps

Interviews with managers and board members

• How is everyday harm acknowledged in policy, gaps in practice
• What resources do they need to prevent and address everyday harm

Resources for everyday steps

• Academic and public summaries about everyday harm – understanding, preventing, addressing and organisational practice
• Guides and resources for everyday steps
   

Our team 

ARC Linkage Project LP210200536 

Flinders University: Sally Robinson, Jan Idle, Rachel High, Ruby Nankivell, Raffaella Cresciani, Eleanor Watson, Su Su Tun 

UNSW Sydney: Karen Fisher, Heikki Ikaheimo, Ciara Smyth, Anna Jones

Northcott Community Researchers: Hannah Ogden, Tyra Buteux, Emma Wood

Partner Organisations: NDIS Quality and Safeguards Commission, SA Department of Human Services, Northcott, Mable, Bedford, Novita, GenU, VACRO, Purple Orange, DANA.  
 

Information about the project

https://www.researchdci.flinders.edu.au/projects/everyday-steps-to-prevent-everyday-harms-of-people-with-disability  

https://www.unsw.edu.au/research/sprc/our-projects/everyday-steps-to-prevent-everyday-harm-of-people-with-disability  

Contact us by email: 

Sally.Robinson@flinders.edu.au 

Karen.Fisher@unsw.edu.au 

 

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Q&A Session 

Thank you to our speakers, we will now open up to the audience for questions. 
 

Close 

Thank you from the Disability Innovation Institute UNSW to our speakers and to everyone for attending today. 

A big thank you to Dan Goodley, Rhea Halsey and the Disability Matters Team for your excellent project oversight and assistance with organising this event. We are very proud to be a part of such an important international project. 

We welcome you to connect with us by email diiu@unsw.edu.au. You can learn more about our work on our website https://www.disabilityinnovation.unsw.edu.au/.