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Research
Evidence on self-advocacy groups

What difference do self-advocacy groups make to the those Functioning and satisfying needs
who take part in them? Liz Tilley, Jan Walmsley, Iva Strnadová, Building on personal aspects, organisations:
Offer connectedness with peers
Joanne Danker and Julie Loblinzk reviewed the literature ● Boost confidence to take control and
●
fight for their rights
● Increase competency through
elf-advocacy, an organised activity in circumstances; personal resources; involvement with others
which people with learning difficulties functioning and satisfying needs; ● Provide a safe space to try new things
Sparticipate in a structured group or and good feelings of happiness, joy out, including various social identities.
organisation, is commonly described as a and satisfaction.
space in which people “can develop not “That was one of my first national
only their confidence, skills and leadership External circumstances experiences... I guess that was one of the
capacity, but also a collective identity, Being involved in self-advocacy groups first times I realised that there are a lot
providing an essential foundation for opened up the outside world, providing: of people in this world with disabilities
grassroots activism” (Tilley, 2013: 470). ● The ability to make new friends and and a lot of us have the same stuff in
It emerged in Scandinavia, North America expand social networks common.” (Caldwell, 2011: 320)
and the UK in the 1980s in response to ● Opportunities for work, paid and unpaid
deinstitutionalisation (Buchanan and ● Access to information and resources Feelings of happiness, joy and satisfaction
Walmsley, 2006) and more recently again in ● Help to change external conditions (eg Groups boosted mood, making people:
response to inequalities, citizenship, abuse housing, relationships and work). ● Positive about being self-advocates
and economic austerity (Walmsley, 2020). ● Feel respected and valued
Subjective wellbeing – an individual’s “There’s always something going on ● Happy from doing things that mattered
feelings and perception of their life – is here. Outside, at home, there’s nothing to them.
increasingly being looked at when to do. It’s really, really boring.”
determining the progress of society and Anderson and Bigby (2017: 115) “Gosh, it really gave me a new way to
assessing overall quality of life (OECD, think about myself. I love myself. I am
2013). Not only is high subjective Individuals’ personal resources not saying I am perfect. Nobody is
wellbeing desirable, but also there are There were benefits for individuals. Groups: perfect. I really like the person I see in
associated benefits to health, income, ● Help increase self-esteem and people’s the mirror. I hope to convey that to
work productivity and social behaviour. confidence to speak up for themselves other self-advocates… It really did
However, researchers have rarely ● Allow people to gain skills and knowledge change my life.” Caldwell (2010: 1008)
looked at subjective wellbeing and ● Change how participants think about
participation in self-advocacy, which is themselves. Other themes: reflections and drawbacks
what our review sought to do. Sometimes, self-advocacy provided a safe
“Trish defined a self-advocate as a space for people to discuss and reflect on
Findings person who can ‘just stand up and experiences of bullying and victimisation,
Taking part in self-advocacy organisations be counted, that’s how I feel. I really enabling them to view their experiences
had positive impacts on all four aspects of can do that’.” Anderson and Bigby as part of a system of oppression.
the dynamic model of wellbeing: external (2017: 115) While self-advocacy was found to help
people in many ways, there were some
negative impacts. These included managing
The impact of self-advocacy organisations on the subjective others’ concerns because some people
wellbeing of people with intellectual disabilities: a systematic feared that an attempt to take more
review of the literature control over their lives might be met with
hostility by families or professionals.
Aims: The research question was: what difference does self-advocacy make to Self-advocacy can stir up memories and
self-advocates’ subjective sense of wellbeing? comparisons with the past, and feelings of
Methods: Articles were read to find out how self-advocacy organisations and groups anger can emerge as people become more
help people with learning difficulties to have a good life. We identified 16 articles in aware of social injustices. Some studies
a literature search which we read closely to discover what self-advocates had to say. identify a vulnerability that can come from
We used the New Economics Foundation’s dynamic model of wellbeing to organise forging a new identity via self-advocacy.
the findings and look at four main areas: personal resources; external conditions; It should also be noted that self-
good functioning and satisfaction of needs; and good feelings day to day and overall. advocacy is not always accessible to
Read the report: Tilley E, Strnadová I, Danker J, Walmsley J, Loblinkz J (2020) The people with substantial support needs.
impact of self-advocacy organizations on the subjective well-being of people with
intellectual disabilities: a systematic review of the literature. Journal of Applied Impact and implications
Research in Intellectual Disabilities. 2020; 00: 1–15. https://doi.org/10.1111/ Overall, our assessment concludes the
jar.12752; easy read version Self advocacy organisations improve people’s lives benefits of self-advocacy groups for the
can be read at: https://disabilityandmeonline.com/?page_id=9 wellbeing of people with learning
difficulties outweigh any disadvantages.

24 Vol 33 No 4 | Summer 2020 Community Living www.cl-initiatives.co.uk