Authors

Daiva Bartušienė¹;  ¹ VYtautas Magnus university, Department of Sociology, Lithuania

Discussion

The core aim of this presentation is to initiate the discussion on how the culture of self-advocacy is changing the role of medical anthropologists. How is an undiagnosed anthropologist seen and assessed by autism community members? Does having a diagnosis, or being self-diagnosed make a medical anthropologist more eligible to represent a community? To what extent does the researcher persist autonomously in a field that is not part of his/her neuro-identity? The culture of self-advocacy refers to the ability of individuals to speak up for themselves with confidence, express their needs, make their “voice visible” and assert their rights to achieve their personal and professional goals. Self-advocates of neurodiversity want to make communities better places for everyone by building an inclusive society and providing adequate representation of community members. However, this raises new challenges for researchers like medical anthropologists and sociologists who are not neurodivergent, diagnosed, or self-diagnosed autistic, ADHD, or OCD people. The main slogan of the global autism community "Nothing about us without us“ not only represents the inclusive attitude towards neurodivergent people but also raises the question: does being on the spectrum and having a diagnosis make you more valuable as a researcher? The experience from my last fieldwork in the autism community “Lietaus vaikai” shows that recent leaders, activists, and self-advocates of neurodiversity have significant symbolic power in evaluating a researcher's eligibility to conduct research and become a representative of the community. One of the targets doing that is making focus on the proper representation and potential social change that is expected from a researcher. During my last ethnographic fieldwork among families with autistic children in 2021 I constantly was asked by my informants, community leaders, and self-advocates questions like this: "How can you understand us and represent properly, if you are not on the autism spectrum and your children are not neurodivergent ", „why are you in a field that doesn‘t give you any personal benefits“? Although the position of the researcher as the dominant agent has long been in considerations the need for discussion increasingly arises. Those queries provoked me to reconsider my own scientific identity and ask what my role as a medical anthropologist in giving a voice to “the others” that already are voiced. How anthropology as a discipline that flourished as a cultural advocate of the "other" is still relevant, despite becoming a hostage to itself in a culture of self-advocacy. Is being undiagnosed a sign of a researcher's weakness? Does being self-focused on a topic and having personal ties with it make you a better representative of the community? 

Keywords: autism anthropology, neurodiversity movement, self-advocacy culture, medical anthropology.