Lived Experience of Disability : Disability Research and Australian Disability Policy.

Format:

Book

Author/Creator:

Mellifont, Damian.

Contributor:

PhD, Dr Damian Mellifont

PhD, Dr Jennifer Smith-Merry

Series:

Disability Studies

Language:

English

Subjects (All):

People with disabilities--Australia.

People with disabilities.

Disability studies.

Physical Description:

1 online resource (283 pages)

Edition:

1st ed.

Place of Publication:

New York : Lived Places Publishing, 2026.

Summary:

Centering lived experience to expose systemic barriers and reimagine disability inclusion.

Contents:

FrontCover

Half-Title

Title Page

Copyright Information

Abstract

Table of Contents

Content warning

Learning objectives

Introduction

References

1 Who has lived experience of disability?

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

2 What does 'good' disability policy look like?

Common features of disability policy

Sense checking

Building coalition

Separating the part from the whole

Knowledge mobilisation

Evaluation

3 Seeing the person before the problem: Using lived experience perspectives to eliminate restrictive practices

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

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

5 Epistemic gaps and policy absences: The plight of older people living with dual sensory impairment

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

6 Charcot-Marie-Tooth disease in rural Australia: A retrospective analysis of research and policy observation

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

7 The lived experience of neurodivergence in academic research studies: A neuro-affirming methodology

Nothing about us without us

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

8 Towards a comprehensive research agenda: Fostering disability inclusion in research and innovation at the University of Queensland

The participatory dynamic

Status of disability research

Strategies as a response

The Plan as a response

Methodology

Data collection and collaboration

Survey

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

Research infrastructure, systems and precincts

Other innovations

Areas outside the remit of the Plan

Next steps

Wider applications

Discussion questions

Recommended further reading

Index.

Notes:

Description based on publisher supplied metadata and other sources.

Part of the metadata in this record was created by AI, based on the text of the resource.

ISBN:

1-918026-04-1

1-918026-05-X

9781918026047

OCLC:

1569915095