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ORIGINAL ARTICLE: Being a member of a self-advocacy group: experiences of intellectually disabled people


  • Ann Gilmartin,

  • Eamonn Slevin


Accessible summary

  • • People with intellectual disabilities talked about how it felt to be a member of a self-advocacy group.
  • • They felt their lives had improved and were more fulfilled as a result of being part of their self-advocacy group.
  • • It is important that people know how self advocacy groups help people with intellectual disabilities.


A phenomenological methodology was used to explore the lived experiences of belonging to a self-advocacy group for people with intellectual disabilities. Thirteen persons with intellectual disabilities who attend three self-advocacy day centre based groups in a city in the west of Ireland were the sample identified for the study. Changes affected by self-advocacy group membership occurred in the day centres the self-advocating participants attended. In addition being a member of a self-advocate group was found to enhance the personal lives of the participants. Empowerment occurred for the participants’ both at an individual and collective basis. The evidence produced suggests that opportunities should be provided for adults with an intellectual disability who are not attending day services to join self-advocacy groups in a community setting as there were clear benefits identified in this study from group membership. A recognition that service providers need to take on board the value that can result from self-advocacy groups was apparent. The need to conduct larger scale studies over larger geographical areas and longitudinal research in this area is highlighted.