Lived Experience of Disability

ISBN 9781918026030

Table of contents

  • 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