All disabled people have the right to participate in cultural, social, and political life, including research, as affirmed by Articles 30 and 31 of the UN Convention on the Rights of Persons with Disabilities. This page centers disabled people's expertise and is informed by the principle of "Nothing About Us Without Us."
Research involving disabled people carries special ethical responsibilities. History shows that disabled people—especially those with intellectual, psychosocial, or cognitive disabilities—have often been exploited, excluded, or harmed by research that treated disability as pathology instead of social difference. Ethical, inclusive research must center dignity, accessibility, consent, community participation, and justice.
¶ Why Ethics and Inclusion Matter
Disabled people have been harmed by research that:
- Conducted experiments without meaningful consent
- Treated disability as a problem to be fixed or eliminated
- Produced knowledge that justified institutionalization and segregation
- Excluded disabled people from decisions about research affecting them
- Failed to share benefits with disabled communities
These harms continue to shape disabled people's reasonable skepticism toward researchers.
The CRPD establishes that:
- Disabled people have the right to participate in cultural, social, and political life, including research
- Data collection should enable policy formulation that benefits disabled people
- Research should be conducted with the full consent of disabled people involved
- Collected information should be accessible to disabled people
Excluding disabled people from research perpetuates invisibility and harms policy, access, and representation. Ethical research should serve disabled communities, not extract from them.
Involve disabled people throughout the research process:
- Design: Disabled people help shape research questions, methods, and priorities
- Data collection: Disabled people participate as researchers, not just subjects
- Analysis: Disabled people help interpret findings
- Dissemination: Findings are shared with disabled communities in accessible formats
Co-production—where disabled people are partners in research, not just participants—is the gold standard.
¶ Accessible Consent and Communication
Consent must be genuinely informed and freely given:
- Consent materials must accommodate communication, cognitive, sensory, and literacy differences
- Consent should be an ongoing process, not a one-time signature
- Supported decision-making should be available for people who need it
- People must be able to withdraw without penalty at any time
Never assume that difficulty communicating means inability to consent.
Research should be accountable to disabled communities:
- Work with Disabled People's Organizations (DPOs) and advisory boards
- Ensure community members have meaningful decision-making power
- Compensate community partners appropriately
- Plan for how research will benefit the community
¶ Respect for Autonomy and Rights
Uphold fundamental rights throughout:
- Privacy and confidentiality protections
- Dignity in all interactions
- Right to decline or withdraw
- Right to access findings about oneself
- Right to have concerns heard and addressed
Research should serve disabled communities:
- Address questions that matter to disabled people
- Share findings in ways communities can use
- Avoid research that could justify harmful policies
- Consider potential misuse of findings
¶ Transparency and Accountability
Be open about research practices:
- Share methods, limitations, and findings in accessible formats
- Include participatory feedback and consent for publication
- Acknowledge funders and potential conflicts of interest
- Be honest about what research can and cannot show
- Consult with disabled people and DPOs about whether the research is needed
- Include disabled people on the research team, not just as advisors
- Build relationships before asking for participation
- Ensure funding includes community compensation and accessibility costs
- Submit plans for ethical review, including disability-specific considerations
- Use accessible formats for all materials (plain language, braille, large print, audio, captioning)
- Offer accommodations proactively, not just on request
- Design with flexibility for varied needs and schedules
- Avoid defining disability as deficit—focus on social and environmental barriers
- Include multiple ways to participate
- Respect participants' expertise on their own lives
- Allow adequate time for communication and decision-making
- Check in regularly about consent and comfort
- Be prepared to adapt methods based on participant needs
- Document access barriers and how they were addressed
- Share findings with participants and community in accessible formats
- Seek community review before publication
- Credit community contributions appropriately
- Report on how findings will be used to benefit disabled communities
- Consider ongoing engagement, not just extraction
- Never assume inability to consent—provide support for decision-making
- Use accessible consent processes (Easy Read, visual supports, verbal explanation)
- Include self-advocates in research design and interpretation
- Be especially attentive to power dynamics
- Apply trauma-informed approaches
- Recognize expertise that comes from lived experience
- Be aware of potential impacts of participation on mental health
- Provide information about support resources
- Include both child assent and parent/guardian consent
- Use age-appropriate and accessible communication
- Consider children's views and experiences, not just adult perspectives
- Protect against additional vulnerability due to disability
- Be especially vigilant about consent when participants may face pressure
- Consider how institutional dynamics affect participation
- Work to include people in institutions without exploiting their situations
- Question whether research supports or challenges institutionalization
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Nind, M. (2014). What is Inclusive Research? London: Bloomsbury — Introduction to inclusive research methods
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Walmsley, J. & Johnson, K. (2003). Inclusive Research with People with Learning Disabilities — On meaningful participation in research
This page centers disabled people's expertise and is informed by the principle of "Nothing About Us Without Us." For questions or to suggest additions, see How to Contribute.