Nothing about Us without Us: Identifying Principles of Justice for Emancipatory Participatory Research in the Context of Neurodiversity

Amandine Catala (Université du Québec à Montreal)

The neurodiversity movement has long advocated for “Nothing about us without us” or the necessity of including Autistics in the production of public policies, social discourses, academic knowledge, and scientific research about autism. Similarly, the scientific and academic community is 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 the frameworks of design justice and epistemic injustice, 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 non-normative communication, of trust-building, and of accountability.