What difference do self-advocacy groups make to the those who take part in them? Liz Tilley, Jan Walmsley, Iva Strnadová, Joanne Danker and Julie Loblinzk reviewed the literature
Self-advocacy, an organised activity in which people with learning difficulties participate in a structured group or organisation, is commonly described as a space in which people “can develop not only their confidence, skills and leadership capacity, but also a collective identity, providing an essential foundation for grassroots activism” (Tilley, 2013: 470).
It emerged in Scandinavia, North America and the UK in the 1980s in response to deinstitutionalisation (Buchanan and Walmsley, 2006) and more recently again in response to inequalities, citizenship, abuse and economic austerity (Walmsley, 2020). Subjective wellbeing – an individual’s feelings and perception of their life – is increasingly being looked at when determining the progress of society and assessing overall quality of life (OECD, 2013). Not only is high subjective wellbeing desirable, but also there are associated benefits to health, income, work productivity and social behaviour.
However, researchers have rarely looked at subjective wellbeing and participation in self-advocacy, which is what our review sought to do.
Findings
Taking part in self-advocacy organisations had positive impacts on all four aspects of the dynamic model of wellbeing: external circumstances; personal resources; functioning and satisfying needs; and good feelings of happiness, joy and satisfaction.
External circumstances
Being involved in self-advocacy groups opened up the outside world, providing:
● The ability to make new friends and expand social networks
● Opportunities for work, paid and unpaid
● Access to information and resources
● Help to change external conditions (eg housing, relationships and work).
“There’s always something going on here. Outside, at home, there’s nothing to do. It’s really, really boring.” Anderson and Bigby (2017: 115)
Individuals’ personal resources
There were benefits for individuals. Groups:
● Help increase self-esteem and people’s confidence to speak up for themselves
● Allow people to gain skills and knowledge
● Change how participants think about themselves.
“Trish defined a self-advocate as a person who can ‘just stand up and be counted, that’s how I feel. I really can do that’.” Anderson and Bigby (2017: 115)
Functioning and satisfying needs
Building on personal aspects, organisations:
● Offer connectedness with peers
● Boost confidence to take control and fight for their rights
● Increase competency through involvement with others
● Provide a safe space to try new things out, including various social identities.
“That was one of my first national experiences… I guess that was one of the first times I realised that there are a lot of people in this world with disabilities and a lot of us have the same stuff in common.” (Caldwell, 2011: 320)
Feelings of happiness, joy and satisfaction
Groups boosted mood, making people:
● Positive about being self-advocates
● Feel respected and valued
● Happy from doing things that mattered to them.
“Gosh, it really gave me a new way to think about myself. I love myself. I am not saying I am perfect. Nobody is perfect. I really like the person I see in the mirror. I hope to convey that to other self-advocates… It really did change my life.” Caldwell (2010: 1008)
Other themes: reflections and drawbacks Sometimes, self-advocacy provided a safe space for people to discuss and reflect on experiences of bullying and victimisation, enabling them to view their experiences as part of a system of oppression. While self-advocacy was found to help people in many ways, there were some negative impacts. These included managing others’ concerns because some people feared that an attempt to take more control over their lives might be met with hostility by families or professionals. Self-advocacy can stir up memories and comparisons with the past, and feelings of anger can emerge as people become more aware of social injustices. Some studies identify a vulnerability that can come from forging a new identity via self-advocacy. It should also be noted that self-advocacy is not always accessible to people with substantial support needs.
Impact and implications
Overall, our assessment concludes the benefits of self-advocacy groups for the wellbeing of people with learning difficulties outweigh any disadvantages. This is important for commissioners, service providers and families to acknowledge especially as services recede and the progress of inclusion is slow (Power et al, 2016; 2018).
More studies are needed to better understand self-advocacy and its effects (especially from diverse perspectives) and about the impacts of different self-advocacy models.
Liz Tilley and Jan Walmsley are at the Open University; Iva Strnadová and Joanne Danker at the University of New South Wales; Julie Loblinzk is at the University of New South Wales and also a self-advocate at Self Advocacy Sydney
References
Anderson S, Bigby B (2017) Self-advocacy as a means to positive identities for people with intellectual disability: “We just help them, be them really”. Journal of Applied Research in Intellectual Disabilities; 30: 109-120.
Buchanan I, Walmsley J. 2006 Self Advocacy in Historical Perspective. British Journal of Learning Disabilities; 34(3):133-138
Caldwell J (2010) Leadership development of individuals with developmental disabilities in the self-advocacy movement. Journal of Intellectual Disability Research; 54: 1004-1014
Caldwell J (2011) Disability identity of leaders in the self-advocacy movement. Intellectual and Developmental Disabilities; 49(5): 315-326
OECD. How’s Life? Measuring Well-Being. 2013. Power A, Bartlett R, Hall E (2016) Peer advocacy in a personalized landscape: the role of peer support in a context of individualized support and austerity. Journal of Intellectual Disabilities; 20(2): 183-193
Power A, Bartlett R. 2018. “I shouldn’t be living there because I am a sponger”: negotiating everyday geographies by people with learning disabilities. Disability & Society; 33(4): 562-578.
Tilley E (2013) Management, leadership and user control in self-advocacy: an English case study. Intellectual and Developmental Disabilities; 51(6): 470–481.
Walmsley J (2020) From ‘nice to have’ to life saver. Community Living 33:2 2020: 23
