Lived Experiences: Bridging the Gap Between Descriptive and Substantive Representation

On 15th July 2021 two disabled local councillors were told that they couldn’t participate in a debate regarding accessibility in a UK city because they were disabled and would therefore be biased. Although the decision to bar the two councillors from participating in the debate was eventually overturned, the incident raises questions both about how the link between lived experience and representation should be understood and/or valued, but also more broadly about how disability and matters of ableism, disablism and accessibility are considered within deliberative and decision-making processes. These are themes which this paper explores through analysing whether, and how, disabled politicians seek to advance the interests of disabled people in the UK. By drawing on a wide range of sources, including interviews, analysis of parliamentary activity, and the memoirs and biographies of disabled politicians, we centre the activities and voices of disabled actors in the process of substantive representation. The research examines the link between descriptive and substantive representation, and finds that while not all disabled politicians choose to focus on disability policy, the concept of lived experience is important for many disability activists, politicians and organisers, who believe not only that it lends authenticity to policy debate but also ultimately enhances the potential for the development of better disability policy