‘Not wanted here’ – the bleak marginalised reality of how evidence informs employment policy for people with a learning disability in England and Wales

Kim Dearing

This blog post is part of a series linked to the Evidence & Policy Special Issue (Volume 17, Issue 2): The many faces of disability in evidence for policy and practice. Guest Edited by Carol Rivas, Ikuko Tomomatsu and David Gough. This post is based on the Special Issue article, ‘Exploring a non-universal understanding of waged work and its consequences: sketching out employment activation for people with an intellectual disability‘.

Less than 6% of working aged adults with a learning disability, who receive social care, are in any form of employment – yet studies show that 65% of this population would like to have paid work. Drawing on empirical data, collected predominantly through ethnographic work, the research presented here offers a critical assessment of the mismatch between current policy and available evidence. What this research shows is that the majority of people within this demographic are underserved or excluded from targeted work preparation support in England and Wales. As a consequence, such dismal employment rates are highly unlikely to increase, regardless of government rhetoric.

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Is equality worth measuring?

Mark Priestley and Stefanos Grammenos

This blog post is part of a series linked to the Evidence & Policy Special Issue (Volume 17, Issue 2): The many faces of disability in evidence for policy and practice. Guest Edited by Carol Rivas, Ikuko Tomomatsu and David Gough. This post is based on the Special Issue article, ‘How useful are equality indicators? The expressive function of ‘stat imperfecta’ in disability rights advocacy‘.

Measuring equality can be difficult, especially when there is a lack of suitable data available, but it makes a difference. If a thing is worth measuring then it is worth measuring well – but even approximate indications of inequality can be useful in drawing public attention to injustices, making marginalised groups more visible and challenging policy assumptions. In a newly published article in Evidence & Policy, we argue that public investments in measuring inequalities have a social value that can’t be measured by technical perfection alone. Imperfect statistics sometimes have strong policy effects!

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Listen to people with disabilities when gathering evidence for policy

Carol Rivas

This blog post is part of a series linked to the Evidence & Policy Special Issue (Volume 17, Issue 2): The many faces of disability in evidence for policy and practice. Guest Edited by Carol Rivas, Ikuko Tomomatsu and David Gough. This post is based on the Special Issue Editorial, ‘The many faces of disability in evidence for policy and practice: embracing complexity’.

Everyone’s a patient’ is a refrain occasionally heard from professional health policy actors dismissive of health service user evidence; they argue that their own lived experience of a visit to the doctor’s gives them sufficient authority.  The fallacy of this is suggested by an eminent psychiatrist’s astonishment at his treatment when hospitalised with a complex leg fracture. A fleeting association with primary care does not equate with the expertise developed by those with conditions with no quick fix – chronic conditions and disabilities. The much-discussed PACE trial shows how political tensions can arise from a disconnect between researchers who make flawed assumptions and those they seek to help. 

So how can we ensure the ‘technical precision and expressive function’ of evidence meet the diverse needs, theoretical and ideological assumptions and priorities of the range of policy actors? How can we prevent procedural values-based decisions driven by political contingencies, drawing selectively on evidence, or the lack of representation or partial representation of disability diversity within evidence and policy?

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Opening the doors of the Machine Room

This blog post is the forth in a series of posts linked to the Evidence & Policy special issue (Volume 16, Issue 2) on Opening up evidence-based policy: exploring citizen and service user expertise. Guest Edited by Ellen Stewart, Jennifer Smith-Merry, and Marc Geddes.

Sarah Carr

Seventeen years ago, Diana Rose wrote that in mental health, user involvement was becoming ‘a technology of legitimation’[1] for reinforcing established powers. Seventeen years later, in examining some of the circuits and processors, Mazanderani and colleagues reveal how complex this ‘technology’ or machinery has become, and is still becoming. As though opening the doors of the machine room, the authors offer us a wealth of important insights and ideas. I’d like to share some thoughts on just a couple of them here.

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Decision-makers should listen to youth and new research shows how this can work

This blog post is the third in a series of posts linked to the Evidence & Policy special issue (Volume 16, Issue 2) on Opening up evidence-based policy: exploring citizen and service user expertise. Guest Edited by Ellen Stewart, Jennifer Smith-Merry, and Marc Geddes.

Scott Warren

I am the co-founder and chief executive officer of Generation Citizen, a non-governmental organization in the United States of America that seeks to empower young people to become engaged and effective citizens, and the author of the 2019 book Generation Citizen: The Power of Youth in Our Politics. At Generation Citizen, we are deeply committed to closing the civic engagement gap.  We offer school-based action civics programming, which provides young people with the opportunity to learn how to affect policy change and work together to take action on a local community issue.  Thousands of Generation Citizen classes have completed these action projects since our founding over a decade ago, and so I have witnessed firsthand the importance and influence of citizen and service user knowledge– in this case, youth knowledge– in informing policy and school decision-making. When students work together to generate relevant evidence and offer evidence-informed ideas of possible solutions, decision-makers should listen.  Sometimes students’ lived experiences can uncover outdated regulations that need updating, or work to better support their most marginalized classmates and their families. Yet, too few decision-makers are listening to youth, especially youth from marginalized backgrounds, and we must do more to facilitate incorporating lived experiences into policy. This is one of the reasons why Generation Citizen has worked to support efforts around the USA to lower the voting age to 16, to create an additional incentive for political leaders to listen to youth.  

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Changing knowledge of citizens and practitioners in times of crisis: the aftermath of Fukushima

This blog is the second of a series of blogs linked to the Evidence & Policy special issue (Volume 16, Issue 2) on Opening up evidence-based policy: exploring citizen and service user expertise. Guest Edited by Ellen Stewart, Jennifer Smith-Merry, and Marc Geddes.

Tazuko Arai

Dear friends,

            How are you doing? You told me how you could not stop binging on COVID-19 news. So, I am sending you something different: “Risk, uncertainty and medical practice: changes in the medical professions following disaster” by Sudeepa Abeysinghe et al. I can see you wince, complaining that a paper written about a nuclear disaster that happened 9 years earlier has nothing to do with what we are undergoing now (note: this piece was written in March-April 2020). Well, I would argue that the paper is quite relevant today because it gives us perspective on how the medical professionals stretched their roles/responsibilities in times of crisis. You told me of your deep respect for these professionals, and I believe this paper will increase your understanding of their challenges and even deepen your appreciation.

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Evidence, medicine and art – lived experience completing the picture

This blog is the first of a series of blogs linked to the Evidence & Policy special issue (Volume 16, Issue 2) on Opening up evidence-based policy: exploring citizen and service user expertise. Guest Edited by Ellen Stewart, Jennifer Smith-Merry, and Marc Geddes.

Laila Hallam

Recently I came upon this photo in a post in Twitter[1].  I have seen it before.  It’s a powerful image by Sir Luke Fields.  The child and doctor at the centre, in the glow of the lamp.   The child ill and exhausted.  The doctor earnestly observing.  Watching.  Sitting.  Waiting.  Thinking.  Previously, and again this time, I absorb this painting as a statement on the medical profession.  A reminder of the solemness of their work.  The gravity of life and death.  The role of the family in the background, secondary and in the dark.

But then I was challenged to really look at the image.  The Dad wasn’t simply in the background, he was standing in the shadows, he was stoic, he was purposefully and intently studying the doctor for signals.  Only after considerable prodding, did I notice Dad’s hand comforting his distraught wife.  The Mum collapsed in prayer, or distress, or both.  Dad’s hand gently on her shoulder, reassuring her, or maybe channelling his energy into her prayer.  Her faith.  Their hope.

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