What does it truly mean to live with disability, and how do policy gaps shape everyday experiences?

Lived Experience of Disability, edited by Damian Mellifont, brings together voices of people with lived experience and committed allies to explore critical issues in Australian disability policy.

Covering topics from restrictive practices and healthcare disparities to barriers in research participation and academic inclusion, this book examines how policy intentions often fall short of meeting real needs. With insights on linguistic deprivation, rural challenges, sensory impairments, and disability leadership, it not only critiques current systems but also points to evidence-based directions for reform.

This is more than an academic resource—it is a call for genuine inclusion, representation, and systemic change. Lived Experience of Disability is ideal for students, researchers, policymakers, and practitioners in disability studies and policy.

• Cover
• Half-Title Page
• Title Page
• Copyright Page
• Abstract
• Table of Contents
• Content warning
• Learning objectives
• Introduction
  • References
• 1 Who has lived experience of disability?
  • Introduction
  • Scholarly constructions of lived experience of disability, complexities and practical implications
  • Representations of lived experience of disability in disability research and disability policy spaces
  • Building an evidence-based case for including more people with lived experience of disability in disability research and policymaking
  • A summary of avenues for future research relating to the question of ‘who has lived experience of disability’?
  • Conclusion
  • References
• 2 What does ‘good’ disability policy look like?
  • Introduction
  • Common features of disability policy
  • Sense checking
  • Building coalition
  • Separating the part from the whole
  • Knowledge mobilisation
  • Evaluation
  • Conclusion
  • References
• 3 Seeing the person before the problem: Using lived experience perspectives to eliminate restrictive practices
  • Introduction
  • The policy issue – Few lived experience perspectives inform restrictive practice policy
  • Restrictive practice-related disability research and policy – Participation barriers and enablers for autistic people, people with an intellectual disability and people with complex communication needs
  • Restrictive practice-related disability research and policy – Participation barriers and enablers for children and young people with disabilities
  • Co-designed research challenges and opportunities to eliminate or reduce restrictive practices – A lived experience research agenda
  • Conclusion
  • References
• 4 Policies to address information deprivation for people with disability
  • Introduction
  • The global prevalence of literacy: Accessible information implications for social participation and inclusion
  • Linguicism and social exclusion
  • My lived experience of linguistic and information deprivation
  • The role of atypical linguicism in information deprivation
  • Critical discussion of three dominant types of accessible information in Australia
  • Plain Language
  • Easy Read
  • Easy English
  • Summary and recommendations for future policy and research directions
  • References
• 5 Epistemic gaps and policy absences: The plight of older people living with dual sensory impairment
  • Introduction
  • Definition, context and heterogeneity
    • Definition
  • Context – Defining the policy issues around DSI and older people
    • Data
    • Heterogeneity
    • Impacts of DSI
  • Policy shortfalls and absences to support older people with DSI
    • International
    • National
  • Epistemic justice, injustice and types of epistemic injustice
    • Epistemic justice
    • Epistemic injustice
  • Types of epistemic injustice
  • The rise and perpetuation of epistemic wrongs
  • Accessibility and epistemic insights
    • Accessibility and its role in epistemic justice
  • The importance of epistemic insights
  • The wasteland and what lies beyond
    • The hermeneutical wasteland
  • Leaving the wasteland
  • A policy and research guide to building hermeneutic resources and promoting epistemic and social justice for people with DSI
  • Conclusion
  • References
• 6 Charcot-Marie-Tooth disease in rural Australia: A retrospective analysis of research and policy observation
  • Introduction
  • Part 1: Research project on CMT
    • Programme description and objectives
    • What is Charcot-Marie-Tooth? Epidemiology
    • Research project initial roll-out
    • Focus groups
    • Genetic testing disparities by remoteness index
    • Diagnosis aversion
  • Part 2: Management of chronic disease and disability in rural Australia
    • The ‘bush telegraph’ and its role in research
    • Case study 1: Rural CMT farming family
    • The evolving recognition of CMT in Australia
    • Case study 2: a rural baker’s narrative
    • Building awareness as a solution to bridging gaps in disability research
    • Future research considerations
  • Part 3: Government policy on disability
    • Tree-change
    • The relationship between policy and legislative instruments in New South Wales
    • Local government’s role in disability research
    • Local council disability-led policy
    • Better policy on state and federal levels of government
  • Conclusion
  • References
• 7 The lived experience of neurodivergence in academic research studies: A neuro-affirming methodology
  • Introduction
  • The language of neurodiversity and its uses
  • Note on language and inclusion criteria
  • Neurodivergent mothers and birthing people
  • Attention-deficit/hyperactivity disorder
  • Autistic mothers and birthing people
  • Childbirth
  • Parenting
  • Insider research
  • Insider–outsider debate
  • Benefits
  • Drawbacks and challenges
  • Participatory research
  • Conclusion: The challenges of a PR PhD
  • References
• 8 Towards a comprehensive research agenda: Fostering disability inclusion in research and innovation at the University of Queensland
  • Introduction
  • The participatory dynamic
  • Status of disability research
  • Strategies as a response
  • The Plan as a response
    • Methodology
    • Data collection and collaboration
    • Survey
    • Focus groups
    • Data analysis
  • Creating the Plan
    • Results
  • Researchers and research culture
  • Research and innovation enabling capabilities
  • Research investment and cross-disciplinary collaboration
  • Research infrastructure, systems and precincts
  • Discussion and implications for research agenda.
  • Resulting actions from the Plan
    • Researchers and research culture
    • Research and innovation enabling capabilities
    • Research investment and cross-disciplinary collaboration
    • Research infrastructure, systems and precincts
    • Other innovations
  • Areas outside the remit of the Plan
  • Next steps
  • Wider applications
  • Conclusion
  • References
• Discussion questions
• Recommended further reading
• Index

Damian Mellifont is a researcher and educator at the University of Sydney whose work advances disability inclusion, policy, and neurodiverse education.

Open Access License

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