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 tips and ideas to facilitate inclusive research practices and promote co-ownership of research. See also What is Inclusive Research?
Tips and Ideas
Here are some tips and ideas of ways to make your research more inclusive.
Overall, the central message is to plan to adapt research methods and offer alternative modes of asking and answering questions, customising the process to the preferred communication mode of the person with disability and providing the supports necessary to enable participation. – Inclusive Practice for Research with Children with Disability: A Guide, Deakin University, 2015
Making sure you have accessible information about your project is an important first step to engaging with people with an intellectual disability. – Inclusion Australia
Provide information about the research process, research tools, surveys, research reports and results, in ways and in formats that are accessible to people with different types of impairments. Options include:
- Easy Read format
- Audio and Podcasts
- Short videos
- Social media
Sharing your research – Where—in what forums—will the results of the research be most likely to reach each of these audiences? Does it make sense to host community discussions to share results? Post video on social media? Design a simple summary that articulates what was learned, and to what end? – 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, pg. 82
Here are examples of Easy Reads being used in research.
Easy Read uses clear, everyday language matched with images to make sure everyone understands.
Easy Read Guides
Doing Research Inclusively: Co-Production in Action – Easy Read, University of NSW
- Booklet 1: Starting research together
- Booklet 2: Planning research together
- Booklet 3: Doing research together
- Booklet 4: Understanding data together
- Booklet 5: Sharing what we learnt together
- Booklet 6: Talking about our research together
- Documents to Help Us Do Research Together
- Summary of the Booklets
Research Project Examples in Easy read
- Improving preventive healthcare project: Why are we doing this project, UNSW Sydney Project website
- Information about the Research Voices Project, Scottish Learning Disabilities Observatory Project website
- Pets for people with intellectual disability, Flinders University, 2021
Research Reports in Easy Read
- Remembering disability institutions, University of Technology Sydney, 2022
- Planning inclusive communities, University of Tasmania, 2023
- Raising the voices of people with intellectual disabilities and changing systems: How CID has helped make change, La Trobe University, 2018
- Research Report: A framework for supported decision-making Easy Read version, Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability, 2023 (PDF)
- How can self-advocacy influence well-being of people with intellectual disability: International program of research, Easy Read report, University New South Wales, Open University (PDF)
- Disability Research Agenda Summary Report, Centre for Intellectual Disability, 2021, (PDF) of this research project.
- A research report about Māori in state care from 1950 to 1999, People First New Zealand Ngā Tāngata Tuatahi, 2021 (PDF)
- UCL Research report Intellectual disabilities: raising awareness and combating stigma: A global review, University College London, 2019 (PDF)
Inclusivity and Consultation
Participant voices. Can you hear your participants in what you, the researchers, the funders, are disseminating about the research? How are images, stories, numbers resulting from the research effort putting participants at the center in how they are shared, versus treating them as objects of a study or as tokens to lend credibility? – 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, pg. 58
- If the research is about people with intellectual disabilities are people with intellectual disabilities involved?
- Are researchers with intellectual disabilities employed in the team?
- How will your project be good for people with intellectual disability?
Include the people that are affected. See:
- A Guide to Planning Inclusive Consultations by Inclusion Australia
- Talking about your consultation by Inclusion Australia
- Factsheet: Inclusive Consultations – Talking Accessibly About Your Project
Take the time that is needed. Time to:
- Build relationships and trust
For example, “Airine is a 12-year-old girl with physical and cognitive disabilities. We met Airine and her parents at their home and explained the research to them, answering their questions and gaining their consent. In all we visited five times, getting to know Airine and her family, often telling stories together as well as explaining the research further. We found that by visiting a number of times we were able to build a relationship with Airine who became more comfortable and open with us.” – Inclusive Practice for Research with Children with Disability: A Guide, Deakin University, 2015, pg11
- Do community testing and gather community input
- Reflect and adapt
Co-researchers, Co-design and Co-ownership
- Invite co-ownership of research, in your processes and legal agreements.
- Set up Research Advisory Groups including people with intellectual disabilities.
- Have research questions that have been developed by people with disability for people with disability.
- Invite co-ownership in how the research is shared.
- How can the research have a greater impact beyond the research project?
The Disability Movement famously argues ‘nothing about us without us.’ Wenn Lawson lives this creed as a world leading autistic advocate and researcher who has helped change how we understand autism and neurodivergence. He shares his journey, including how he shook the house of academia so it would listen to the lives of autistic people. He reflects on the power of co-produced research, identity and difference in how we build knowledge together.
Questions to consider:
- Who do you want to talk to?
- Why do you want to talk to them?
- What questions do you want to ask?
- When do you want to talk to them?
- Where will you talk? online, in person, in a survey?
- How will you make the talk accessible?
- Do you want to talk to people individually, or in groups?
- Do you want to talk once or many times?
Power and Equity
- How can the research lift the voices of people with disability?
Right or wrong, research can drive decisions. If we do not address the power dynamic in the creation of research, at best, we are driving decision-making from partial truths. At worst, we are generating inaccurate information that ultimately does more harm than good in our communities. This is why we must care about how research is created. – 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, pg 6
It’s more than that. It is how you are at the table. If you don’t decide what’s on the menu, if you are invited after the menu is set, you are still a guest. We as researchers get funded to be hosts. But in truth, the community should be the hosts, we are guests. – Angela Odoms-Young , 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, pg 16
- “What narratives have previously described the organization’s participants, its work in the community, or its type of work?
- How have these narratives served participants well?
- How have they harmed them, or reinforced inequities?
- With this understanding, how can this research be framed to take on unjust narratives? What cultural context is important to tell?” –
- Source: 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, pg 58
- Do you have consent?
- Do participants have a choice in how to participate? e.g such as individually or in a group, how they would like to be communicated with.
- Is there an an exit option?
- Have you considered how you can adapt the consent process? e.g Deakin University has suggested the following options: Easy Read, Video Information Statements, Online Survey Platforms and Supported Decision Making.
Examples of Consent Forms
- Deakin University Video Information Statement and Plain Language Statement with online survey
- Survey and Consent Form for researchers to give to interview participants, University of New South Wales (Word document)
Privacy and Confidentiality
- Ensure the right to privacy for participants and confidentiality of information.
- Is your project about anything that might be upsetting for people?
- What support will you give people to feel safe if they speak with you?
- Is the research discrimination and trauma informed?
How do awareness of trauma and the research study’s potential to trigger memories and emotions shape the work? A study can be an emotional trigger for program participants, and for staff who were themselves researched or interrogated in other ways in their childhood. Trauma expertise can inform study outreach and study design to minimize that effect. For example, trauma awareness can shape how staff participate in the research (and change whether their stress is transmitting fear to participants). If this is not an area in which your team is experienced, seek out expertise so you are equipped to answer these questions. – 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, pg 73
- Does your research respectfully remunerate people with disability and their representative organisations?
- Help identify and mitigate risks.
- Own your mistakes.
- Does your research comply with the relevant standards?
Some standards to consider:
- The Australian Code for the Responsible Conduct of Research (2018)
- The National Statement on Ethical Conduct in Human Research (2007)—Updated 2018
- Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders
- AIATSIS Code of Ethics for Aboriginal and Torres Strait Islander Research (the AIATSIS Code)
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.
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- Accessible Online Meetings
- Making Advocacy Accessible Collection in the Commons Library
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