Giving up your personal information to researchers

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Giving up your personal information to researchers

• Sally Robinson and Robert Strike
• Disability Studies and Research Institute

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Structure

• Underpinning concepts of participation
• Experience in participation the good, the bad
  and the ugly
• What supports good experiences of participation?

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Engagement

• Disability legislations aspirational principles
  set expectation of engagement
• Social policy research increasing emphasis on
  engaging with the subjects of research

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• Discord between agendas of government and agendas
  of people with disability regarding engagement in
  research

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Participation

• 1. Having the opportunity to learn the skills of
  participation - by practicing them
• 2. Others acting in a way that invites
  participation and providing the necessary or
  desired support to the participant (Yeatman,
  2000)

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• Where are people with disability situated in the
  research process?
• What drives research on disability issues
  conducted for government?

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Roberts experiences

• The good
• The bad
• The ugly

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What is most often happening?

• One off consultation
• Tightly controlled
• Closed forums, closed questions
• Opaque process lack of feedback
• No recognition of cost

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• Dominance of the Service Structure
• Accountability to service users
• Control by service providers
• Limited view of people as consumers
• Opportunity to give meaningful input
• Skills to give input and influence change
• Seeing people as more than service users

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What engages people?

• Participatory methodology
• Multiple layers of engagement
• Using accessible processes
• Demonstrated respect
• Gathering and use of information

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• Recognition of costs
• Minimisation of risk
• Recognition of citizenship
• Opportunities for skill sharing
• Skilled facilitation

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What do we need more of?

• Need for a range of strategies and tools
• Less reliance on the personal commitment of
  individuals
• Representativeness

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• For people to really participate, they need to
  learn how to have their say, there needs to be
  times and places to speak up, and there needs to
  be support if you want or need it
• Participation needs to drive research, not be an
  added extra

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• Sally Robinson
• DSaRI
• 02 6689 5207
• srobinson_at_dsari.org.au
• Robert Strike
• 0423 453 914