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 ( 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 round We 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 Disabled People Leading Change