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Disabled People Creating Our Own Knowledge
The UK and the global context
Disabled people leading change • Disability Rights UK – wording for equal participation for all
• Majority of trustees, staff and volunteers have lived experience of disability or health conditions
• All information and advice designed by and for disabled people. Website reaches 1.5 million people each year
Disabled People Leading Change
Disabled people leading projects
Disabled People Leading Change
Disabled people creating knowledge
• Through history – the importance of communities defining our own reality
• Challenging what is viewed as ‘natural’ or inevitable
• ‘Poverty is not an accident. Like slavery and Apartheid, it is man-made and can be removed by the actions of human beings’ (Nelson Mandela)
• ‘We’re not mad we’re angry’
• ‘We are disabled by society’
Disabled People Leading Change
Disabled people creating knowledge
• Tom Shakespeare noted that research led by disabled people provided the evidence of discrimination, which persuaded UK government to introduce 1995 disability discrimination law
• And to introduce personalised support for independent living (1996 - direct payments)
• DRILL (Disability Research into Independent Living and Learning) is £5 million programme of research co-led by disabled people, to generate evidence for solutions in a new era
Disabled People Leading Change
Launch of DRILL 2015
Disabled People Leading Change
Disabled people creating knowledge
Led by 4 organisations (Inclusion Scotland, DR UK, Disability Wales, Disability Action N. Ireland)
Roadshows to find diverse disabled people’s priorities
Themes: participation in social, economic and public life
Projects co-produced by disabled people and researchers
Every level of decision making led by disabled people, with researchers and policy experts
Disabled People Leading Change
Learning from first roundWe are reaching disabled people who do not always have a voice eg those with learning difficulties, mental health issues
Disabled people ask different research questions to those often asked by academics and professionals eg:
•not what ‘interventions’ work but how and with what wider infrastructure does mutual, peer support improve life outcomes
•not how to prevent or cure dementia, but what facilitates living a good life with dementia
•and different themes – eg autonomy; supported rather than substitute decision-making
Disabled People Leading Change
Changing the narrative Our 4 organisations will conduct research on how best to change public and policy narratives
Understanding what disabled people most want to communicate AND how those receiving messages frame and receive these messages
Avoiding contradictory or ineffective campaigns eg: have we moved the concept of disabled people from ‘victims of impairment’ to ‘victims of discrimination’? Have we in a time of austerity pushed for social protection at the expense of equal participation?
Seeking effective narratives of equal participation
Conclusion
In DRILL we are hugely keen to learn globally on:
• Research led or co-led by disabled people
• Programmes that aim to change the narrative on disabled people in society
www.disabilityrightsuk.org
www.drilluk.org.uk
Disabled People Leading Change
