PODCAST: The many faces of disability

This podcast is based on the special issue of Evidence & Policy ‘‘The many faces of disability in evidence for policy and practice: embracing complexity.

Carol Rivas and Ikuko Tomomatsu

In this episode of the Transforming Society Podcast, Jess Miles speaks with Carol Rivas and Ikuko Tomomatsu, two of the guest editors of a special issue of Evidence & PolicyThe many faces of disability in evidence for policy and practice: embracing complexity’.

They discuss the problems with current representations of disability, recent examples of policy that has failed disabled people and the changes that could be made so people with disabilities can be better supported and allowed to participate in policy making.

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Our common purpose for new policies and laws: biology is the gradient that unifies us

Cheryl J. Widman and Emily L. Casanova

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, ‘A sociological treatment exploring the medical model in relation to the neurodiversity movement with reference to policy and practice‘.

A couple of years ago my (Widman’s) son – who is autistic – was going to Sweden to visit family. My nephew, who is deaf, rejected getting together with my son because, after all, my son is not fluent in sign language. My nephew felt that he and my son would not have much in common nor a way to communicate – although as young kids, they were close and found a way to communicate anyway. This caused me to think about what has been going on within the disability community, or more correctly, ‘communities’, and how it got to be so siloed.

Nowhere is disability more dichotomised than within the autistic community. We have folks who celebrate neurodiversity while others eschew it. Some insist on identity-first language while others insist upon person-first. There are those who are hoping for a cure (medical model) while others embrace their autism (cultural model). Autistic culture has become less unifying than factional. If we can’t agree on how to refer to ourselves (‘autistic’ or ‘with autism’), how can we agree on anything else? The feuding is often caustic.

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The absence of culturally appropriate evidence can produce or exacerbate inequities

Rayanne de Sales Lima, Andréa Borghi Moreira Jacinto and Rodrigo Arthuso Arantes Faria

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, ‘Ignoring evidence, producing inequities: public policies, disability and the case of Kaiowá and Guarani Indigenous children with disabilities in Brazil‘.

The implementation of public policies is a process that is as complex as its formulation, especially when we set out to solve issues in communities whose codes and languages are not shared by policymakers.

For example, Brazil is a country of continental proportions. Its population and socio-political contexts are very diverse. In the 2010 census, 305 indigenous ethnicities were identified, ranging from peoples living under voluntary isolation to groups living in major cities, spread across the 27 Brazilian states. Such diversity engenders a multitude of viewpoints about socially relevant problems, which universal public policies cannot cover without proper adaptations.

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We can make better evidence for social policy by seeing participation differently

Sally Robinson, kylie valentine and Jan Idle

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, ‘Disability and family violence prevention: a case study on participation in evidence making‘.

Early intervention and prevention are ideas so sound in theory that no one would ever disagree with promoting them. Of course it is better to prevent a problem than wait until it occurs before doing something about it! Equally, better protection for women and children who are especially vulnerable to domestic and family violence is also unanimously supported. So why is violence prevention for women and children with disability so hard to achieve? Why, when it has been known for years that the risks of violence for this group are even higher than the (already high) risks for all women and children, and resources have been allocated in multiple strategies and programmes, are they still so likely to experience these harms?

One key explanation is that current ways to gather evidence for policy are too narrow and formal to capture the everyday practices, relationships and decisions that make policy and programmes work. If so, what is the alternative? Our Evidence & Policy article describes a violence prevention project that investigates the strengths and challenges of current efforts, using a case study approach and focusing on the perspectives and priorities of disabled adults and children, and of service providers.

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Why should market stewardship draw on lived experience evidence?

Ariella Meltzer, Helen Dickinson, Eleanor Malbon and Gemma Carey

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, ‘Why is lived experience important for market stewardship? A proposed framework for why and how lived experience should be included in stewarding disability markets‘.

Many countries are moving towards market-based provision of human services, with ‘quasi-markets’ in place. Quasi-markets are different to the conventional markets we are used to within our daily lives, as they require governments to play a role in helping to steer them to success. This is known as ‘market stewardship’. In our Evidence & Policy article, we explore the types of evidence that government uses to make decisions about how quasi-markets should run.

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‘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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