Over the past few weeks I have been writing course material on the subject of advocacy. Following discussion with colleagues, I began to think more carefully about terminology, and specifically whether self-advocacy groups are in any way distinct from other ‘user groups’ in health and social care. Self-advocacy was a term coined in the learning disability field, and describes the process of ‘speaking up for oneself’. Self-advocacy organisations are, in the main, independent voluntary groups, although many are reliant on state funding for survival. Self-advocacy groups provide a space where people come together to develop their skills in advocating for themselves. But they also provide a mechanism for social networks, the development of a collective identity, and a channel for participation in local (and sometimes national) decision-making processes about services. Some self-advocacy organisations (notably People First groups in learning disability) also claim to help people secure their rights, and affect social change.
In this, self-advocacy groups are not much different from the myriad of other user groups in health and social care. In all these groups, peer support is extremely important. In a blog entry on service users helping each other to produce personalised support, Clare Evans stated that hard to reach service users frequently benefit from direct contact with their ‘experienced peers’ (http://www.communitycare.co.uk/blogs/social-care-experts-blog/2009/07/service-users-help-each-other.html). However, self-advocacy groups for people with learning disabilities employ non-disabled staff to support this process. Rohhss Chapman wrote about the role of such non-disabled support workers in her PhD thesis, but the wider literature on self-advocacy groups (who often refer to themselves as ‘user-led’ organisations) is notably silent on the issue.
If a distinguishing feature of self-advocacy for people with learning disabilities within the wider context of user groups is the role of support workers who do not have the label of learning disability, is it not time that we looked more carefully at the nature of this support role in practice? I suspect there is reluctance in the advocacy community to do so, because the implication is that such a discussion shifts the focus away from self-advocates. Some may view this as a threat to people’s empowerment. However, with more local authorities drawing on self-advocacy organisations to provide a representative voice for the local population of people with learning difficulties, whilst the threat to self-advocacy funding becomes ever more acute, surely the question of how self-advocacy groups are run and indeed where power lies within these groups, becomes ever more pressing?