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Dr 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.  

For the video recording of this presentation, please see the online symposia page.

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 in the field of education. The second project is work within the GeneEQUAL inclusive research program, specifically the 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 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:  

[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.   

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.   

Strnadová, I., Dowse, L., & Garcia-Lee, B. (2022). Doing Research Inclusively: Co-Production in Action. DIIU UNSW Sydney.  

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