“We just help them, be them really”

Building positive, included identities: engagement in self advocacy groups by adults with an intellectual disability

Sian Anderson (PhD candidate)

School of Social Work and Social Policy

Faculty of Health Sciences

LaTrobe University1

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Research project

Goals: To explore the experience of self advocacy in ‘independent’ self advocacy groups.

To examine the way those experiences have had an impact on the identity of self advocates in two different policy contexts – Australia and the UK.

To explore the implications of this knowledge about individual experiences in self advocacy for the future funding and support of independent self advocacy in Australia.

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Damaged social identities

Belonging to a devalued social group is inevitably damaging to the self concept of its members... (Tajfel, 1978, 1981; Turner et al, 1987)

Negative implications of ‘labelling’ for the self concept and social inclusion of people with intellectual disability (Bogdan & Taylor, 1994; Finlay & Lyons, 1998; Sinason, 1992)

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Problem of ongoing social exclusion of people with intellectual disabilities.

Variety of approaches with mixed or partial success including;

• Deinstitutionalisation

• Economic participation

• Access to information, the digital world

• Building social relationships

• Self authored spaces (Milner & Kelly, 2009)

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Self advocacy in the literatureSelf advocacy groups are created by and for people with

intellectual disabilities.

Self advocacy is about speaking up, developing skills in empowerment, competence and resilience (Atkinson, 2002; Barnes & Mercer, 2006; Chappell et al, 2002; Dybwad & Bersani, 1986)

Self advocacy provides the opportunity to see oneself in a new light, to ‘put your best foot forward’ (Gerber et al, 1996)

Independent groups are ‘ideal’.

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More about the research project

• Method

• Engaged with six self advocacy groups, 4 in the UK and 2 in Australia. Groups were ‘independent’ groups.

• Semi-structured interviews with a focus on identity with 25 self advocates and 10 supporters.

• Analysed the data and developed a model

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Characteristics of the six self advocacy groups in this study

Collegiality

Nobody calls me a mong here. They know my name, they use it properly. (Emma, self advocate, Purple Group)

People are listening, no interrupting when I have something to say. (Nella, self advocate, Blue Group)

We all get along together and work together, it’s good when that happens. (Liam, self advocate, Red Group)

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Characteristics of the six self advocacy groups in this study (2)Sense of ownership and control by members

This is our own group, we’re in charge of it. (Tony, Magenta Group)

We show everyone that we can run meetings, run the office, keep our place going. (Daniel, Red Group)

Supporters played a critical role in the groups.

Groups created opportunities for change in the lives of members through the broad range of activities and roles they offered.

Different places and activities

I used to go to a day centre. I didn't like it there. Woodwork and maxi packs and things, boring... I've moved on since the day centre. Done things I never would have done before, that’s right. (Henry, Green Group)

I can do different kinds of stuff I couldn’t do before. I can speak up for myself much more better than I could before and do many more things I couldn’t do before...talking on the phone, talk to new people, going out places. (Emma, Purple Group)

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Speaking out and being gobby

It helps me to speak up for myself, like it makes me speak up for myself and makes me feel more confident (John, self advocate, Green Group)

You couldn’t guess really now, [Audrey] can tell you this too, but before I wouldn’t say boo to a goose! (Darren, self advocate, Indigo Group)

Having fun and being happy

It makes me happy. I feel more confident I think I am. I can go to different places. It makes me so happy. (Ben, self advocate, Blue Group)

It’s good fun. (Nick, self advocate, Green Group)

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Relieving boredom

There’s always something going on here. Outside, at home there’s nothing to do. It’s really, really boring. (Frank, self advocate, Green Group)

I’m out. I’m busy. At home I just watch TV or do vacuum the floor and things like that. (Rita, self advocate, Red Group)

Having power and status in the group

I’ve done so many things in my role as president. (Yvonne, Magenta Group)

I’m in charge of the meeting, I tell people you be quiet if they go on talking and talking. (Nick, Green Group)

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Helping others

We help people to speak up for their own rights and help them to choose for themselves what they want to do...We try to help people as best we can. (Trish, Green Group)

And I help people. If they have problems they come and talk to me and that. (Rita, Red Group)

Being a friend and having friends

I come to meetings with my friend, with [Rita]. (Anne, Red Group)

The men’s group is friendly, just friends. (Nick, Green Group)

Two significant outcomes of engagement with the group

• Being confident

• Engaged with life

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New identities

Having a business-like identity

People in my group know they can rely on me to collect the mail and answer the phone properly, they trust me. (Henry, Green Group)

Being an independent person

“I have learned a lot from the courses and stuff I’ve done here. I speak up for myself. I told my mother I wanted to move out of home. She said no you can’t, but I said: I’m a 50 year old man I want to try it for myself, see if I can make it.” (Frank, Green Group)

New identities (2)

Being an expert

Self advocates can tell people in the community what its like to live your life with a learning disability. (Audrey, self advocate, Indigo Group)

They enjoy my speech, my training. They reckon it’s important. (Henry, self advocate, Green Group)

Being a self advocate

Just stand up and be counted. (Trish, self advocate, Green Group)

We are all just people. People speaking out for their rights. (Daniel, self advocate, Red Group)

Conclusion

“Change” - major theme from data.

Key features of self advocacy groups produce positive outcomes for members.

High quality support an important element.

Independent groups?

Policy and funding support needed to create opportunities for more people to engage with groups.

We just help them, be them really. (Darren, self advocate, Indigo Group)

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Sian Anderson

s7anderson@students.latrobe.edu.au