The radically integrated approach of Tōjisha-kenkyū / An autistic application of Tōjisha-kenkyū

Описание: In the Japanese language of the last 25 years, tōjisha (当事者) is a versatile word that refers to anyone who experiences discrimination in mainstream society, such as people with disabilities, neurodivergent people, victims of violence and abuse, or any other kind of disadvantaged minority – whereas kenkyū (研究) simply means research. Tōjisha-kenkyū (当事者研究) is a relatively new method and movement in which groups of tōjisha systematically discover, develop and take charge of a conceptual framework that describes their experiences, creating a solid base for peer support, advocacy and emancipation.
At the University of Tokyo's Tōjisha-kenkyū Kumagaya Laboratory, led by Prof. Shin-ichiro Kumagaya who is himself a tōjisha with cerebral palsy, the Tōjisha-kenkyū movement interfaces directly with mainstream science to develop a peer-reviewed evidence base for the experiences and concepts developed by this radical form of collaborative self-research.
In September 2024, Heta Pukki and Martijn Dekker were invited to Japan to speak at an international neurodiversity symposium organised out of this laboratory, and during that trip they were introduced to the fascinating idea and practice of Tōjisha-kenkyū. This presentation reports on what we learned and experienced, and discusses how these learnings may inspire the neurodiversity movement in the West.
Following on from Martijn's report, Ayaya's presentation will dives more deeply into the norm-breaking and concept-building potential of Tōjisha-kenkyū. A concrete example is presented in the form of an autistic-led Tōjisha-kenkyū self-help group called Otoemojite that ran at the University of Tokyo for a decade. Best practices derived from the experiences running this group are presented, such as rules of communication and behaviour that suit us, a script for moderators, key focal points, and specific peer research methods. This is followed by a discussion of the challenges faced during the COVID-19 pandemic as well as a discussion of new challenges and new directions in the present time. The presentation is in Japanese with English subtitles.

Martijn “McDutchie” Dekker is a 51 year old autistic parent of three and autism trainer. He was diagnosed in 1995 at age 21 and was actively present in online autistic space from then on, witnessing the neurodiversity movement in its infancy. In July 1996, he set up the first entirely self-hosted online autistic community on the internet: InLv (Independent Living on the Autistic Spectrum), which lived until 2012-ish. He served on the board of Autscape in various capacities, including chair, programme coordinator and technical manager, between 2006 and 2015 and from 2016 until now. In September 2024 he went to Japan with Heta Pukki and learned about the fascinating approach of Tōjisha-kenkyū, in which people with disabilities take charge of the conceptual framework in which they are discussed and researched.

Satsuki Ayaya, Ph.D., is an autistic researcher in Japan. From an early age, she has struggled with speech difficulties, unexplained physical weakness, and sensory experiences that differ from those of other people. While at university, she worked with Deaf students and learned sign language as a way of expressing herself. After being diagnosed as an adult, she has been running a Tōjisha-kenkyū group with neurodivergent peers.
Ayaya is also a project associate professor at the Research Centre for Advanced Science and Technology at the University of Tokyo, where she researches the history, philosophy and methods of Tojisha-Kenkyu. She is currently working on issues related to the protection of the human rights of autistic people and collaborative research between minorities and academia.
Publications (in Japanese) include: ‘Developmental Disorders Tōjisha-kenkyū’ (2008), ‘The Birth of Tōjisha-kenkyū’ (2023).

These are two presentations from Online Autscape 2025 “More Autistic Joy”, given on Sunday 9th February at 10.30 and 10.50 UTC/GMT. For other presentations from this autistic-led event, see:
https://www.autscape.org/2025/program...