Research is a crucial aspect of driving decision-making and shaping policies. However, traditional research methods have often overlooked the voices and perspectives of marginalised groups, including people with disabilities. To ensure that research findings and recommendations have a meaningful impact, it is crucial to adopt an equity-based approach that involves co-producing research with people who have lived experience of disability.
Here are some guidelines, checklists and examples to facilitate inclusive research practices and promote co-ownership of research with people with disability. See also How to do Inclusive Research.
Inclusive research requires an ethic of respect for the lives, views and experiences of people with intellectual disabilities, and for the knowledge they hold and can add to the research process. – A Chalachanová, et al., Building Relationships in Inclusive Research in Diverse Contexts, Scandinavian Journal of Disability Research, 2020
Guidelines, Checklists and Examples
- Doing research and projects with people with an intellectual disability, Inclusion Australia, 2023
A 6 page form for researchers who want to work with people with an intellectual disability.
- Working with people with an intellectual disability: A guide for researchers, Inclusion Australia, 2023
A 4 page Easy Read Guide about why accessible research is important.
- Getting Involved in Research and Training Projects: A Guide for Persons with Disabilities, A National Gateway to Self-Determination, 2011
A 15 page guide to help persons with disabilities get involved in research and training activities.
- Inclusive Research Practice Guides and Checklists for Autism Research, Cooperative Research Centre for Living with Autism, 2016
17 pages with 9 Research practice guides and 8 checklists.
- Doing Research Inclusively: Guidelines for Co-Producing Research with People with Disability, Disability Innovation Institute UNSW Sydney, 2020
These guidelines, 17 pages, have been developed for academic researchers, people with lived experience of disability, disability organisations, and other stakeholders who understand and appreciate the importance of co-producing research together with people who have lived experience of disability.
- Why am I always being researched? A guidebook for community organizations, researchers, and funders to help us get from insufficient understanding to more authentic truth, Chicago Beyond, 2019
This publication, 112 pages, outlines how to begin to level the playing field and reckon with unintended bias when it comes to research. Chicago Beyond created this guidebook to help shift the power dynamic and the way community organizations, researchers, and funders uncover knowledge together. It is an equity-based approach to research that offers one way in which we can restore communities as authors and owners.
- Research for All: Making Research Inclusive of People with Disabilities: Providing tools and resources for practitioners, researchers and policymakers to ensure best-practice in disability-inclusive development, Research for Development Impact Network, 2020
An in depth guide, 150 pages, providing tools and resources for practitioners, researchers and policymakers to ensure best-practice in disability-inclusive development
- Inclusive Practice for Research with Children with Disability: A Guide, Deakin University, 2015
56 pages includes tips and tools for communicating with children.
Inclusive Research in Action
- Co-researcher training with young people with intellectual disability – An inclusive approach to research
A partnership in Sydney with two young people with intellectual disability to learn about participatory research methods to support a PhD researcher. Together Matt, Maya and Laurel are testing out different research methods to decide which methods will best enable children with intellectual disability in hospital to express what is a good experience of hospital care.
- #WithNotFor: The Importance of Inclusivity in Research
The Special Olympics is undertaking research that is developed and conducted with a team that includes individuals with Intellectual and Developmental Disability.
- The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation research
- Promoting disability inclusion in sexual and reproductive health research and programming: Experiences from W-DARE (Women with Disability taking Action on Reproductive and sexual health), 2018
- Empowerment and Well-Being Through Participatory Action Research and Accessible Gaming: A Case Study With Adults With Intellectual Disability
- Diverse faces of inclusive research: reflecting on three research studies, Scandinavian Journal of Disability Research, 2016
Inclusive Research Examples from Organisations
People With Disability Australia PWDA is committed to research that is community led and preferably driven by people with disability. We support Inclusive Research frameworks and strongly advocate for genuine co-creation of research with people with disability that is fully recognised. – PWDA
- Research Protocols and Ethics, People With Disability Australia PWDA
- Design principles – A community-directed research methodology, First Peoples Disability Network Australia
- Accessibility in Research: From Design to Dissemination, Royal Roads University, 2022
- How We Work: The Inclusive Research Network’s way of doing projects, Ireland, 2018
Working with Data
The disability data advocacy toolkit was created by CBM Global Disability Inclusion in response to increasing interest and requests from persons with disabilities and their representative organizations from all over the world. The aim of this toolkit is to contribute to the growing global dialogue on the importance of data on persons with disabilities, specifically to provide some basic knowledge on data collection, analysis, and use of data for evidence-based advocacy to influence policy and decision-makers.
- Disability Data Advocacy Toolkit in English
- How to get and use data to make life better for people with disabilities
- An abridged version of the Disability Data Advocacy Toolkit in International Sign
- Disability Data Advocacy Toolkit in Easy Read – How to get and use data to make life better for people with disabilities
- Disability Data Advocacy Toolkit – Launch webinar
- Disability Data Advocacy Working Group
Looking for researchers or people to participate in research projects?
- Inclusion Australia
Inclusion Australia has an Easy Read monthly bulletin to help people with an intellectual disability to find out about new projects.
- Inclusive Research Network, Centre for Disability Studies CDS, University of Sydney
The Inclusive Research Network (IRN) at CDS is a group of people with and without intellectual disability who do research together.
- Accessibility: Introduction to Thinking about Events and Engagement
- Digital Accessibility: Making Online Spaces Accessible
- Accessible Online Meetings
- Making Advocacy Accessible Collection in the Commons Library
- Research & Archiving
- Justice, Diversity & Inclusion