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Representing autism: Challenges of collective representation in German and Israeli associations for and of autistic people

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  • Raz, Aviad
  • Jongsma, Karin R.
  • Rimon-Zarfaty, Nitzan
  • Späth, Elisabeth
  • Bar-Nadav, Bosmat
  • Vaintropov, Ella
  • Schicktanz, Silke

Abstract

The important work done by various associations of and for people with disabilities is legitimated by their claim for collective representation. However, there is little empirical research that examines the organizational basis for such claims. We focus on patient/disability advocacy associations that illustrate a split of representation between organizations of and for autism. Drawing on documentary analysis and semi-structured interviews conducted in 2015–2017 with members and office-holders of autism associations in Germany and Israel, we highlight several common gaps and their relations to the organizational characteristics of the associations: Representing only part of the autism spectrum, and lack of efficient procedures for including the variety of members. We conclude by discussing the language and epistemology of „high-functioning”/”Aspies” vs. „low-functioning”/”Kanners” as politically and culturally embedded, highlighting the significance and difficulties of dialogue amidst autism-related epistemic communities.

Suggested Citation

  • Raz, Aviad & Jongsma, Karin R. & Rimon-Zarfaty, Nitzan & Späth, Elisabeth & Bar-Nadav, Bosmat & Vaintropov, Ella & Schicktanz, Silke, 2018. "Representing autism: Challenges of collective representation in German and Israeli associations for and of autistic people," Social Science & Medicine, Elsevier, vol. 200(C), pages 65-72.
    • Handle: RePEc:eee:socmed:v:200:y:2018:i:c:p:65-72
    DOI: 10.1016/j.socscimed.2018.01.024
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    References listed on IDEAS

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    1. Vololona Rabeharisoa, 2013. "Evidence-based activism: Patients’ organisations, users’ and activist’s groups in knowledge society," CSI Working Papers Series 033, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    2. Madeleine Akrich, 2010. "From Communities of Practice to Epistemic Communities: Health Mobilizations on the Internet," Sociological Research Online, , vol. 15(2), pages 116-132, May.
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    Cited by:

    1. Chamak, Brigitte, 2019. "Lobbying by association: The case of autism and the controversy over packing therapy in France," Social Science & Medicine, Elsevier, vol. 230(C), pages 256-263.
    2. Schneid, Iris & Raz, Aviad E., 2020. "The mask of autism: Social camouflaging and impression management as coping/normalization from the perspectives of autistic adults," Social Science & Medicine, Elsevier, vol. 248(C).

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