The Personal is Political – And Then What? Ideology, Representation, and Legitimacy in a Swedish Disability Organisation

Abstract

Background: Who can or cannot claim to represent other members within the disability rights movement has been discussed for decades, mainly concerning being disabled as an eligibility prerequisite. Aim(s): The aim is to analyse arguments concerning representational claims within a Swedish disability rights organisation (DHR, Disability Human Rights). Method: Every member of DHR was given the opportunity to answer three open-ended questions. Answers were subjected to a qualitative content analysis. Results: Two main dimensions of arguments were found. The ideological dimension legitimises representation through lived experience or a human rights approach. The pragmatic dimension legitimises representation through relational claims or organisational necessities. Further analysis revealed a paradox: When a representative is required to have a body with certain characteristics, other knowledge-related aspects risk devaluation. Conclusion(s): Paradoxically, the organisation has a goal of rendering impairment irrelevant in society, while rendering impairment a main issue when electing representatives.