title: An exploration of the self-advocacy support role through collaborative research: 'there should never be a them and us'.
abstract: BACKGROUND
  The role of the support worker in self-advocacy groups for people with intellectual disability is pivotal in setting the scene for empowerment. However, despite the growing importance of the role, it has attracted very little scrutiny.
  
  
  METHODS
  The study developed an inclusive team approach working alongside researchers labelled with learning difficulties. Emphasis was placed on making all aspects of the research cycle accessible to the team. A variety of qualitative methods were used.
  
  
  RESULTS
  Despite supporters' allegiances to disability equality and their emphasis on reflexivity, many crucial aspects of organizational practice and support remained hidden. However, an emerging shared narrative about the potential of people first implied the possibility of increased collaboration. This was evidenced in some of the groups.
  
  
  CONCLUSIONS
  Where problematic practice was discussed, supporters were open to developing alternative approaches. Acknowledging members contributions alongside the work of their supporters helped nurture more collaborative relationships. A lot of accessible methods were used to find out what was happening. Much support work is hidden away and not listed by organisations. The supporter role is very complex where supporters are managed by members. Supporters may find ways to hold on to power even when they say they try not to. There were some good ways seen for members and supporters to work together fairly. The writer talks about working in a team with researchers with learning difficulties. The study concludes that we can all learn from each other.
authors: University of Manchester, Manchester, UK.
authors: Rohhss
authors: R
authors: Chapman
mesh_terms: D003299:Cooperative Behavior; D006233:Persons with Disabilities; D006801:Humans; D008607:Intellectual Disability; D007859:Learning Disabilities; D010344:Patient Advocacy; D011209:Power, Psychological; D036301:Qualitative Research; D012106:Research; D012108:Research Personnel / Q000458:organization & administration*
keywords: collaboration; learning difficulties; participatory; people first; self-advocacy; supporter