Welcome to this exciting addition to the Disability Studies Collection. In the following chapters, you will read about lived experiences of disability together with their practical implications for future disability research and policy directions throughout Australia. We trust that you find these lived experiences of disability and related research and policy discussions to be engaging, educational and inspiring. This book is informed by authors with lived experience of disability as well as genuine disability allies who hold a common passion towards making positive and practical differences in the lives of people with disability across Australia and further afield. Please note that the first Editor will have more to say in relation to lived experience of disability in the chapter to follow where they delve deeply into this intriguing subject.

Why is the inclusion of lived experience of disability a central theme which binds the chapters of this book together? An appreciation and centring of the lived realities of any people’s experiences are now increasingly fundamental to arguments which are supportive of self-determination and human rights (Bennett et al., 2024). Historically, people with disability have had limited involvement in redressing the disability policy issues which are key to their well-being (Ndlovu & Woldegiorgis, 2023). This is still the case and this gap continues to impact the way people with disability are included in society. There is much evidence supporting the role of stigma and discrimination towards excluding people with mental disability from employment, education and healthcare opportunities (Cummings et al., 2013; Evans-Lacko et al., 2012; Langmead, 2018). Yet, regardless of harmful disability stereotypes rarely impacting on people without disability, it is these persons who are often empowered to implement policy actions and decisions on behalf of the aforementioned population (Olsen, 2020). In a progressive development, the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) embraced a core principal that people with disability hold a fundamental right to be involved in the policies and decisions which affect them (Löve et al., 2017; Stein & Lord, 2010). By embracing this principal, the UNCRPD challenged a previously unrestrained norm in terms of who is included in disability policymaking (Löve, 2023). Specifically, Article 4(3) of this Convention requires governments to actively include people with disability in the development and implementation of disability policy and legislation (Löve et al., 2017). The rights of people with disability to be actively included and respected in disability policymaking activities therefore needs to be consistently acknowledged and enacted upon within Australia and beyond.

Advocacy has played a central role in promoting the inclusion of people with disability in disability policymaking. A right to participate in disability policymaking stems from the demands of people with disability to be treated as citizens who hold capacity to inform policy decisions and directions which impact upon their lives (Gunnarsdóttir & Löve, 2024; Quinn, 2009). This has been denied to people with disability in the past. As noted above, people with disability can hold shared experience of various forms of exclusion in society and the relevance of such experience to disability policymaking should not be downplayed. It is this shared experience which holds potential to build connections among people with disability, to progress meaningful engagement through this collective voice and to impact policy (D’Cruz et al., 2020; Veitch, 2024). Shared experience can act to inform not only pressing disability policy issues in employment, education and healthcare but also the measures that are urgently needed to redress them. Potential therefore exists for disability policymaking to be improved through having more people with disability who are not only qualified as policy professionals, but also who are qualified in terms of holding various lived experiences of disability (Mellifont & Smith-Merry, 2016). People with disability therefore need greater representation in codeveloping the policies that impact upon their lives as policymakers, and also as stakeholders who are included in welcoming and accessible disability policy consultations.

We the Editors of this volume hold a strong and shared appreciation for the importance of evidence-based disability policy that is informed by researchers with lived experience of disability and their allies. In putting together this volume we were motivated to have an open platform for people to present their perspectives on the inclusion of lived experience in policy in order to redress the gaps in current scholarship and policy design. Despite people with disability experiencing worse health than those without disability, various areas of disability policy interest remain under-researched (e.g. disability services and healthcare) (Krahn et al., 2015; Slattery et al., 2023). This indicates a need for greater government investment in disability policies whose issues and measures are informed by research that is either led by people with disability or codesigned with people with disability. Where disability studies are conducted, the inclusion of researchers with disability can vary from tokenistic inclusion right through to genuine inclusion as respected members of the research team (Bowers et al., 2008; Mellifont, 2023; Simpson, 2013). Smith-Merry et al. (2024) warned that the inclusion of researchers with disability risks falling away in the critical writing up of findings stage. By including lived experience of disability throughout the research process, power inequities can be challenged while the knowledge and expertise of the cohort to be most influenced by research findings is recognised (Chapman et al., 2024; Series, 2019). Conversely, exclusion of researchers with disability in studies about disability contributes to unequal opportunities for these researchers to be a part of knowledge production (including the academic careers that this knowledge production also supports), research that is not generalisable and ultimately poor disability policy outcomes (Ouellette, 2019; Rios et al., 2016; Slattery et al., 2023). Studies conducted with researchers with disability can require adjustments and accommodations, including access to assistive devices and other technologies; these are often not supported (or included) as part of research funding applications, which means that the knowledge of people who require support is also excluded (Watharow & Wayland, 2022). Consequently, the representation of researchers with lived experience of disability remains low where such accommodations for researchers with disabilities are needed (Bennett et al., 2024; Mellifont et al., 2019). Unaccommodating disability research environments therefore need to be recognised and addressed as a disability policy priority.

We now provide a quick introduction to each of the following chapters. As mentioned above, in the upcoming chapter, the first Editor addresses the challenging question of who has lived experience of disability. Next, Jade McEwen critically discusses what ‘good’ disability policymaking codesign looks like. Bethany Easton and co-authors will then examine the pressing requirement to include lived experience perspectives in discourse concerning restrictive practices which confront people with disabilities. In their chapter, Cassandra Wright-Dole then draws on their lived experience of linguistic and information deprivation as well as scholarly evidence to call for recommendations to improve social and other outcomes for people with disability impacted by informational loss. Annmaree Watharow, Georgia Fagan and Moira Dunsmore discuss the importance of including the lived and living experiences of older persons with dual sensory impairment in disability policies and practices. Next, Scott Denton raises their policy observations, concerns and evidence-based ways forward regarding the pressing issue of experiences of Charcot-Marie-Tooth Disease in rural Australia. Jayne Garrod’s chapter highlights the importance of participatory, insider, and codesigned research in terms of understanding the lived experiences of neurodivergent people. Last, Paul Harpur and colleagues investigate the University of Queensland’s Champions of Change: Disability Inclusion Research and Innovation Plan in terms of its capacity to foster disability-inclusive research in higher education. Included among the chapters are suggested research topics which hold strong potential to inform evidence-based disability policy in Australia as well as other places. We conclude this text by offering learning objectives as well as a set of discussion questions for readers’ careful consideration and responses.

Before going any further and reflecting our shared passion for disability research and disability policymaking, we would like to take this opportunity to offer our sincere thanks to the wonderful authors for their insightful and valuable contributions to this book. It was an honour and a pleasure to work with each of you in bringing this volume together. We would also like to thank the Lived Places Publishing cofounder, Mr David Parker, for his enthusiasm and support for not only this project, but also for the Disability Studies Collection more widely which we have both been enthusiastic champions of since its launch. We sincerely hope that you enjoy your reading journey into the lived experiences of disability as shared throughout this volume together with their implications for future disability research and policy directions in Australia and beyond.

Book Editors:

Dr Damian Mellifont

Lived Experience Postdoctoral Fellow and Associate Lecturer

Centre for Disability Research and Policy

The University of Sydney

Professor Jennifer Smith-Merry

ARC Industry Laureate Fellow

Centre for Disability Research and Policy

The University of Sydney