Nothing About Us Without Us: Identifying Principles of Justice For Emancipatory Participatory Research in the Context of Neurodiversity
This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.
About the autistic author markerCatala, A. (2024). Nothing About Us Without Us: Identifying Principles of Justice For Emancipatory Participatory Research in the Context of Neurodiversity. Kennedy Institute of Ethics Journal, 34(2), 311-331. https://doi.org/10.1353/ken.2024.a958997
- Journal or book title
- Kennedy Institute of Ethics journal
- Publisher
- Project MUSE
- Volume
- 34
- Issue
- 2
- Pages
- 311-331
This publication is integrated into AutiHub through:
Authors
Abstract
The neurodiversity movement has long advocated for "Nothing about us without us" or the necessity of including neurominoritized people, such as Autistics, in the production of public policies, social discourses, academic knowledge, and scientific research about neurominoritized profiles, including autism. Similarly, the scientific and academic communities are increasingly recognizing the importance for participatory research to be not only ethical but also emancipatory. Yet the call for "Nothing about us without us" is still too often ignored, inaccurately understood, or imperfectly applied, in ways that can be jarring and disrespectful at best, and violent and traumatic at worst. Drawing on my experience as an Autistic woman, academic, and self-advocate who has participated in studies on autism, I develop a proposal for how the principle of "Nothing about us without us," understood as reclaiming epistemic authority and agency, might best be implemented in emancipatory research with Autistic adults. Specifically, I turn to two frameworks that have so far been developed independently of each other, yet that prove to be particularly fruitful when used together in this context: namely, the frameworks of design justice and of epistemic injustice. Drawing on both frameworks, I identify four principles of justice so that participatory autism research can be conducted in both an ethical and an emancipatory manner that heeds the neurodiversity movement's call for "Nothing about us without us" - namely, the principles of thorough involvement, of nonnormative communication, of trust-building, and of accountability.
Bibliography cited by this reference
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Cited bibliography overview
These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 3 Oct 2026 01:00.
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- 12
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- 25
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Mylène Legault *Autistic author. Learn more… , Amandine Catala *Autistic author. Learn more… , Pierre Poirier (2024). Breaking the stigma around autism: moving away from neuronormativity using epistemic justice and 4E cognition . Synthese, 204(3). Springer Science and Business Media LLC.