Nothing About Us Without Us: Identifying Principles of Justice For Emancipatory Participatory Research in the Context of Neurodiversity

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Catala, 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

Publication date: 1 Jun 2024 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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  1. Amandine Catala *

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.

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13
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Cited references with an identified autistic author
5 / 13 (38.5%)
Cited author occurrences identified as autistic
6 / 25 (24.0%)
Among occurrences linked to AutiHub author records: 6 / 17 (35.3%). Distinct cited authors identified as autistic: 4 / 21 (19.0%).
Cited author occurrences linked to AutiHub author records
17 / 25 (68.0%)
Distinct linked cited authors: 13 / 21 (61.9%)
Linked cited-author occurrences not identified as autistic
11 / 17 (64.7%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 11 / 25 (44.0%). Distinct linked cited authors not identified as autistic: 9 / 13 (69.2%).
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