Nothing About Us Without Us: Equity-Based Principles for Inclusive Disability Research

In 1998, disability rights activist James Charlton described the disability community’s demand for “recognition of their human rights and their central role in determining those rights” (p. ix). Carlton titled his path-paving book, Nothing about us without us: Disability oppression and empowerment, popularizing a phrase disability activists used in South Africa and Eastern Europe.

Twenty-five years later, nothing about us without us remains an empowering mantra of the disability community, expressing the conviction of people with disabilities that they know what is best for them, whether it be programs, policy, or research. Although researchers have worked to represent people with disabilities through such approaches as human-centered and participatory research designs (Koontz et al., 2022), research still remains without us. 

In this blog, we describe three equity-based principles informed by our work on equity centered research for a community historically excluded from and overlooked in research: representation, engagement, and leveraging assets. These principles are a starting place for beginning researchers and a building block for experienced researchers who want to include and centralize the decision-making of people with disabilities.

Represent the unique experiences of people with disabilities in research

People with disabilities are typically excluded as a focal population of study from mainstream research. For example, when RTI International examined the experiences of students with disabilities who are survivors of sexual assault, we were confronted with a lack of evidence and lack of representation of these students in the empirical literature. We reviewed the Campus Climate Survey, the main data collection instrument that examines post-secondary students nationally who are survivors of sexual assault (Krebs et al., 2016), but the survey did not ask students about their disability status. Consequently, students with disabilities were not represented in the research base, requiring RTI to collect primary data to understand their experiences. This specific example is representative of the field, which includes few studies or large-scale survey datasets in which students with disabilities are represented well or at all (Leake, 2015; Madaus et al., 2018). 

This principle of representation is vital for conducting effective research and building knowledge, particularly on marginalized communities that have often been excluded from the research process (Brooks, 2007; Drawson et al., 2017). People with disabilities are too often overlooked in research, and as researchers we need to identify ways to include their unique needs and experiences in the questions we ask and the steps we recommend.

For researchers, this means we can do the following:

• Reflect on one own's conscious or unconscious bias about people with disabilities before and during the research process.
• Actively engage with the topic from the worldview of people with disabilities, asking “Whose worldview is this research reflecting?,” and “In what ways does this topic affect—positively or negatively—people with disabilities? 
• Review literature—research, white papers, gray literature—that offers insight into the experiences of people with disabilities, especially for the social condition being examined.

Engage people with disabilities as researchers

People with disabilities are also excluded from engaging in a research process. Most often research is done on people with disabilities, not with them. Considered a path-paving book for engagement, Walmsley and Johnson (2003) use the term “inclusive research”; other researchers use terms such as participatory (Brush et al., 2022), emancipatory, or action research, but the goal is communication among those who participate and among researchers across fields. Just a few years later, the United Nations Convention on the Rights of Persons with Disabilities called for engaging people with disabilities in decision-making about programs and policies that affect them (Henricks, 2007). Johnson (2009) reflected the call in an 18-month project in Ireland, “No Longer Researching Us without Us.” Individuals with intellectual disabilities engaged in the research process, resulting in stronger self-advocacy and actions on issues that affect them. More recently, Walmsley, Johnson, and colleagues (Garratt et al., 2022) shared lessons learned from 30 years of inclusive research in breaking down barriers and social change, adding that much work remains to be done.

The principle of engagement within the research process is our responsibility as researchers as part of disrupting this historical exclusion of people with disabilities. To that end, we need to engage people with disabilities and their communities in intentional and authentic partnerships. Starting places for engagement can be found in Walmsley et al.’s (2018) review of 52 articles that included people with disabilities and in Bigby, Frawley, and Ramcharan’s (2014) strategies for research engagement. For example, individuals who advise on research methodology, choose issues that are important for them to conduct inquiry about those issues, and collaborate with individuals who share similar interests to develop accessible research questions.

Research can create the knowledge necessary to improve conditions or issues participants most care about. Including people with disabilities as active participants (“initiators, doers, writers, and disseminators of research; Johnson & Walmsley, 2003, p. 9) benefits those most affected by the conditions being researched. This cannot happen unless those who are most affected have a voice in the process.

For researchers, this means 

• Partnering with members of the disability community, as fellow researchers or as “cultural translators” (Kien, 2007);
• Creating inclusive spaces for people with disabilities to provide feedback on the research, and using inclusive facilitation methods;
• Asking research participants about their experiences with discrimination or oppression within the social condition being studied; and
• Creating advisory panels that include people with disabilities, and giving the panel the power to shape the research.

Leverage the assets of people with disabilities in research designs

Finally, when people with disabilities are actually a focus of a research experience, too often that experience is framed as a deficit. Deficit framing attributes conditions to individual deficiencies or deviations from the norm, seeing disability as an inability or a limitation, a thing to overcome, or a “risk factor to being a valuable human resource” (Lundberg, 2024, p. 1725; Soffer & Chew, 2014).  

A deficit perspective often offers a “person-centered” explanation for outcomes that relies on “motivational or cognitive deficits” of the individual (Valencia, 1995). When we as researchers apply a deficit perspective, or framework, to our research on people with disabilities, we perpetuate their stigmatization. 

Instead, the principle of asset or strength framing acknowledges the strengths of people with disabilities and shifts the research focus to structural systems that support or impede success. This includes acknowledging not only the historical foundation for the inequity, but also the current social and political systems that keep those inequities in place (Andrews et al., 2019). Keeping the focus on why inequities exist represents a shift away from identifying interventions or solutions that fix some aspects of the individual “deficiencies” to fixing the causes of inequities that would lead to improved outcomes (Irons, 2019).

For example, we know that students with disabilities are intelligent, capable, ready, and eager to learn. They are attending institutions of higher education at increasing rates. Rather than examine why students with disabilities have among the lowest rates of proficiency and success in K–12 school outcomes, an asset-based framework would focus on how students with disabilities in universities persist to earn their degrees despite challenges entering higher education, stereotypes, academic underpreparedness, or other barriers.

For researchers, this means 

• Acknowledging the aspirations and the strengths within this community;
• Educating ourselves on the history of ableism and ways to dismantle it, considering what historical policies and practices shaped the current system of ableism for people with disabilities;
• Identifying the current policies and practices that maintain barriers for people with disabilities in community participation; and
• Examining root causes of barriers to employment or education. 

Conclusion: Creating Inclusive Research for People with Disabilities

Nothing about us without us is not a narrow motto. The U.S. State Department (2021) calls for “full participation in society,” and the United Nations (2010) describes this participation as “genuine” and “meaningful.” People with disabilities are forced to navigate a world that is quite different from that of their non-disabled peers, needing to ask for accommodations simply because the world was not designed with accessibility in mind. Research is no exception. As researchers, we are part of a historical system that has excluded people with disabilities from our profession. It is up to us to make an active effort to remove those barriers, representing people with disabilities in research, focusing on their assets, and rightfully including them as co-owners of the research process. 

References

• Bigby, C., Frawley, P., & Ramcharan, P. (2014). Conceptualizing inclusive research with people with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 27(1), 3–12.
• Brush, B. L., Mentz, G., Jensen, M., Jacobs, B., Saylor, K. M., Rowe, Z., Israel, B. A., & Lachance, L. (2020). Success in long-standing community-based participatory research (CBPR) partnerships: A scoping literature review. Health Education & Behavior, 47(4), 556–568. 
• Charlton, J. I. (1998). Nothing about us without us. In J. Carlton (Ed.), Nothing about us without us. Oakland, CA: University of California Press.
• Garratt, D., Johnson, K., Millear, A., Picken, S., Slattery, J., & Walmsley, J. (2022). Celebrating thirty years of inclusive research. Social Sciences, 11, 385.
• Hendriks, A. (2007). UN Convention on the Rights of Persons with Disabilities. European Journal of Health Law, 14(3), 273–298.
• Koontz, A., Duvall, J., Johnson, R., Reissman, T., & Smith, E. (2022). “Nothing about us without us:” engaging at users in at research. Assistive Technology, 34(5), 499–500.
• Leake, D. (2015). Problematic data on how many students in postsecondary education have a disability. Journal of Postsecondary Education and Disability, 28(1), 73–87.
• Lundberg, C. S. (2024). Striving to abolish a deficit approach to disability: frames applied by frontline workers and activist entrepreneurs in employment. Disability & Society, 39(7), 1725–1746.
• Johnson, K., & Walmsley, J. (2003). Inclusive research with people with learning disabilities: Past, present and futures. Philadelphia, PA: Jessica Kingsley Publishers.
• Kien, L. (2007). The importance of culture in evaluation: A practical guide for evaluators. Denver, CO: The Colorado Trust. 
• Krebs, C., Lindquist, C., Berzofsky, M., Shook-Sa, B., Peterson, K., Planty, M., Langton, L., & Stroop, J. (2016, January). Campus Climate Survey Validation Study Final Technical Report. Bureau of Justice Statistics Research and Development Series (R&DP-2015:04, NCJ 249545). Washington, DC: Bureau of Justice Statistics.
• Madaus, J. W., Gelbar, N. W., Dukes, III, L.L., Lalor, A. R., Lombardi, A., Kowitt, J., & Faggella-Luby, M. (2018). Literature on postsecondary disability services: A call for research guidelines. Journal of Diversity in Higher Education, 11(2), 133–145. 
• Soffer, M., & Chew, F. (2015). Framing disability among young adults with disabilities and non-disabled young adults: an exploratory study. Disability and Rehabilitation, 37(2), 171–178.
• Walmsley, J., Strnadová, I., & Johnson, K. (2018). The added value of inclusive research. Journal of Applied Research in Intellectual Disabilities, 31(5), 751–759.