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. https://doi.org/10.1111/jar.12083 

Conceptualizing Inclusive Research with People with Intellectual Disability


“Walmsley (2001) coined the term ‘inclusive research’ to denote research involving people with intellectual disability as ‘more than just subjects or respondents’’

Other words to describe it include participatory, collaborative, and co-researching, action, and emancipatory. The words are not necessarily true, accurate, or applicable as participation of individuals with ID has not been exclusively restricted to qualitative research.

Inclusive Research

Raskoff, S. Z., Thurm, A., Miguel, H. O., Kim, S. Y. H., & Quezado, Z. M. N. (2023). Pain research and children and adolescents with severe intellectual disability: ethical challenges and imperatives. The Lancet. Child & adolescent health, 7(4), 288–296. https://doi.org/10.1016/S2352-4642(22)00346-7

Pain research and children and adolescents with severe intellectual disability: ethical challenges and imperatives

Children with Intellectual Disability are less likely than typically developing children to be included in clinical research, even though they are more likely to have painful comorbidities and medical interventions.

Involvement of Children with Intellectual Disability in Research

Fair participation selection protects vulnerable populations. The persons recruited for research should be selected based on the aims of the study and not vulnerability, privilege, or other unrelated factors. Those with severe intellectual and developmental disabilities should only be involved in research if relevant data cannot be collected without them.

Fair Participant Selection

Research, Culture and Psychology- disabilities Studies

Individuals with intellectual disabilities can serve as active members of research teams in both qualitative and quantitative studies, participating in the research process rather than merely serving as subjects.

Bridgewater College

Cedarville University

Google

The inclusion of individuals with disabilities in research is a debated topic lacking protocol. 

Disability Studies Research Ethics

To justify exposing participants to risks, there is an expectation that the results lead to an improvement in health, well-being, or an increase in knowledge. This requirement protects participants from being exposed to unjustified risks. It also ensures that funds are being used responsibly. 


Social/Scientific Value

The use of accepted scientific principles and methods to produce reliable and valid data

Scientific Validity

The minimization risks and enhancement of potential benefits. Research should only expose participants to risks (eg. psychological, physical, or economic burdens) that are necessary to obtain the relevant scientific data.

Favorable Risk–Benefit Ratio

A review by individuals unfamiliar with the research. Consists of reviewing the research trial design, the proposed participant selection, and it's risk-benefit ratio.

Independent Review Boards

This article explores the ethical issues of healthy individuals using pharmaceutical cognitive enhancers like modafinil to boost focus and performance. It raises concerns about fairness, social pressure, personal authenticity, and health risks, arguing that such use may deepen inequality and normalize drug use for non-medical purposes. The authors call for public education, regulation, and further research to address the societal and ethical challenges posed by cognitive enhancement.

Ethical Aspects of the Abuse of Pharmaceutical Enhancements by Healthy People in the Context of Improving Cognitive Functions

This article explores how nonmedical use of ADHD medications by healthy students is widely seen—especially by those with genuine ADHD diagnoses—as unethical and unfair. Students with ADHD express frustration that their necessary treatment is being misused as a performance enhancer by peers who often have greater social and economic privilege. This off-label use not only trivializes their medical needs but also reinforces inequality, creates stigma, and fuels suspicion from healthcare providers, making it harder for them to access proper care. 

"The White Version of Cheating?" Ethical and Social Equity Concerns of Cognitive Enhancing Drug Users in Higher Education.

The article reviews how individuals with ADHD experience public stigma, self-stigma, and courtesy stigma, with a particular focus on the harmful effects of internalizing negative societal attitudes. It explains that skepticism toward ADHD diagnoses and treatments—especially medication—can lead people with ADHD to hide their condition, reject support, and feel ashamed of their needs. This stigma, especially when internalized, negatively impacts self-esteem, treatment adherence, and overall quality of life.

Stigma in Attention Deficit Hyperactivity Disorder 

The article highlights how adolescents with ADHD navigate their sense of self within social and medical contexts that often frame neurodivergence as a deficit. While the diagnosis itself could serve as an important narrative for understanding their experiences, it was the visible symptoms of ADHD that tended to attract stigma. Medication also played a complicated role in identity, with some adolescents feeling pressured to use stimulants in order to meet social and academic norms, even at the cost of feeling “not themselves.” A recurring pattern was that adolescents downplayed their individual identity in order to preserve relationships and meet expectations, underscoring how ableist frameworks continue to shape what is considered acceptable behavior and belonging.

ADHD and Identity Formation: Adolescents' Experiences From the Healthcare System and Peer Relationships

The article emphasizes that justice in research must extend beyond equitable selection also to ensure that disabled participants benefit from the knowledge and interventions their involvement makes possible. Too often, disabled people contribute data and bear risks, yet structural barriers and ableist research priorities prevent them from accessing the outcomes. From this perspective, advancing justice requires participatory research models that elevate disabled voices, challenge “normalizing” assumptions, and work toward a fairer redistribution of research benefits.

Implementing Justice in Research: Beyond Equitable Selection 

Ashley Shew critiques how conversations about AI often reproduce ableist assumptions. Shew argues that mainstream visions of AI and robotics frequently frame disability as a problem to be solved through technological intervention, rather than recognizing disabled people as central voices in shaping technological futures. The concept of technoableism describes this tendency to privilege high-tech “fixes” and idealized notions of ability, while sidelining the lived experiences and innovations of disabled communities. Shew calls for shifting perspectives so that AI development does not reinforce narrow standards of normalcy or perpetuate exclusion, but instead includes disabled people’s expertise, values, and critiques in imagining more just technological futures.

Ableism, Technoableism, and Future AI

The article argues that bias against disabled people in AI systems often begins long before algorithms are trained—it starts with how “disability” itself is defined. Drawing on disability models like the medical and social frameworks, the authors show that these definitions shape data collection, system goals, and deployment, often embedding ableist assumptions. They emphasize that true fairness requires transparency about these definitions, participatory design with disabled people, and a structural lens that moves beyond abstract metrics to confront cultural and systemic ableism.

Definition Drives Design: Disability Models and Mechanisms of Bias in AI Technologies 

Shelley Tremain argues that disability should not be understood as a fixed biological condition or a stable identity, but as a product of historically specific relations of power and knowledge. Drawing on Foucault’s concepts of discourse and governmentality, she contends that disability is continually produced through social, political, and institutional practices that define what counts as normal, valuable, or functional. Tremain challenges liberal and bioethical approaches that assume disability merely needs to be accommodated, showing instead how such frameworks reinforce ableist norms by naturalizing them. Ultimately, she calls for a historicist and feminist genealogy of disability—one that exposes how philosophical and scientific traditions have governed disabled bodies and minds through the very act of defining them.

This Is What a Historicist and Relativist Feminist Philosophy of Disability Looks Like

In “A Naturalized Narrative,” Tremain argues that disability is not a fixed biological fact but a socially and politically produced category. She critiques how dominant narratives treat disability as “natural,” masking the ways that institutions, medical discourse, and power relations actually create and sustain it. Drawing on Foucault, Tremain shows that disability is an effect of biopower—a system that defines, regulates, and normalizes bodies in ways that uphold ableist norms.

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