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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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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Walking the tightrope: expert legitimacy as a navigation between technocracy and politics

Justyna Bandola-Gill

What makes experts legitimate in the eyes of policymakers? Even though this is one of the foundational questions of the interdisciplinary scholarship on evidence and policy, the answer is neither straightforward nor simple. Expert legitimacy is driven by seeming contradictions – experts have to be responsive to policymakers’ needs but, at the same time, they cannot be too close to politics. They have to provide advice which is strongly grounded in science but if their advice is too complex it risks being ignored or being perceived too ‘detached’ and ‘academic’. Experts are legitimate when they are insiders and outsiders at the same time.  This dynamic has become particularly evident in the ongoing pandemic, where government advisors have had to represent (and at times defend) science whilst at the same time accounting for what policy directions are ‘doable’ – publicly and politically acceptable and economically feasible.

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How do policymakers perceive qualitative research?

Rebecca S. Natow

Qualitative research has the potential to be of great value in policymaking. By examining stakeholders’ lived experiences, providing rich detail about policy contexts, and offering nuanced insights about the processes through which programmes are implemented, qualitative research can supply useful information that is not easily, if at all, obtainable through surveys and other quantitative methods. However, policymakers consistently express a preference for quantitative research. This is particularly true for randomised controlled trials (RCTs), which have been called the ‘gold standard’ of evaluation methods.

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What I’ve learnt about participatory budgeting for research funding decisions since publishing

Cobi Calyx

I’ve learnt a few things in the few weeks since my Evidence & Policy debate article about using participatory budgeting for research funding decisions has been published. This article emerged from my PhD research about tradeoffs in deliberative public engagement with science. It argues that using participatory budgeting public engagement methods to make research funding decisions would further the international shift towards public participation in governance.

More controversially, my article argues that this would be a better way to reform research funding than lotteries, which others’ research indicates would be better than current norms. Norms are changing though – one of the things I’ve learnt more about since publishing this article is how the Health Research Council of New Zealand has been using a lottery to allocate some grants. They have been doing that for long enough to publish a peer-reviewed paper about it.

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Lessons from the field about how to ‘nudge plus’

Liz Richardson and Peter John

Behaviour change policies, known as nudges, have been used by governments across the world to get people to behave in pro-social ways, such as making healthier lifestyle choices or reducing their environmental footprints. Nudges use behavioural insights to steer people into doing the right thing, while also giving them the choice. Critics argue that traditional nudge policies are top-down, manipulative and un-transparent. Nudge policies seem to expect the worse in people, and are easy to caricature as a technocratic approaches to policy design.

However, a new kind of nudge – ‘nudge plus’ – has started to spring up. Nudge plus tackles the risks of paternalism in traditional approaches through the participation of those being nudged.  If nudges are going to be even more ‘bottom-up’, how can such behavioural public policies be developed?

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