Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation

Am J Bioeth. 2020 May;20(4):13-24. doi: 10.1080/15265161.2020.1730482.

Abstract

Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that role entails. We attempt to answer these questions by defending a set of evaluative criteria that can be used to assess the legitimacy of advocacy organizations and other nonelectoral representatives. With these criteria in hand, we identify a form of misrepresentation common but not unique to autism advocacy, which we refer to as partial representation. Partial representation occurs when an actor claims to represent a particular group of people but appropriately engages with only a subset of that group. After highlighting symbolic and substantive harms associated with partial representation, we propose several strategies for overcoming it.

Keywords: ASD; Autism; disability; representation.

MeSH terms

  • Autism Spectrum Disorder / prevention & control*
  • Health Policy / legislation & jurisprudence
  • Humans
  • Organizations / ethics*
  • Parents*
  • Patient Advocacy / ethics*
  • Patient Advocacy / standards*
  • Politics
  • Social Responsibility
  • Stakeholder Participation
  • United States