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Am J Bioeth ; 20(4): 13-24, 2020 May.
Article in English | MEDLINE | ID: mdl-32208091

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.


Subject(s)
Autism Spectrum Disorder/prevention & control , Organizations/ethics , Parents , Patient Advocacy/ethics , Patient Advocacy/standards , Health Policy/legislation & jurisprudence , Humans , Politics , Social Responsibility , Stakeholder Participation , United States
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