Literature DB >> 29421473

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

Aviad Raz1, Karin R Jongsma2, Nitzan Rimon-Zarfaty2, Elisabeth Späth2, Bosmat Bar-Nadav3, Ella Vaintropov3, Silke Schicktanz2.   

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.
Copyright © 2018 Elsevier Ltd. All rights reserved.

Entities:  

Keywords:  Autism; Collective representation; Disability advocacy; Germany; Israel; Patient organizations

Mesh:

Year:  2018        PMID: 29421473     DOI: 10.1016/j.socscimed.2018.01.024

Source DB:  PubMed          Journal:  Soc Sci Med        ISSN: 0277-9536            Impact factor:   4.634


  1 in total

1.  Patient Representation and Advocacy for Alzheimer Disease in Germany and Israel.

Authors:  Silke Schicktanz; Nitzan Rimon-Zarfaty; Aviad Raz; Karin Jongsma
Journal:  J Bioeth Inq       Date:  2018-07-31       Impact factor: 1.352

  1 in total

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