Listen to people with disabilities when gathering evidence for policy
Author: Carol Rivas
This post was originally published by the Evidence & Policy blog on 2 June, 2021.
We have re-issued the article that has already been published by the Evidence & Policy blog. We would like to express gratitude to the kind offer of the editorial board of the Evidence & Policy blog.
Original article URL: https://bit.ly/35miTW6
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?
The Evidence & Policy special issue I guest edited explores these and related questions with topics ranging from welfare benefits for learning disabilities to the treatment of indigenous families in Brazil, explorations of different epistemological practices and considerations of the push and pull between policymakers and researchers within the evidence ecosystem.
Our editorial made several recommendations, including:
People with disabilities should participate as equals with other policy actors in evidence production and policy decision-making processes.
They should be recognised for their expertise as well as their experiences of disability, so their voices are not silenced or deprioritised by more powerful actors.
Their abilities and strengths should be harnessed across all types of policy, abandoning both disableism (viewing people with disabilities as deficient) and ableism (neglecting to consider them).
Policy actors – whether producers or users of evidence – must clearly acknowledge that there is no such thing as a perfect piece of evidence, adopting theoretical and epistemological variety for a holistic understanding of disability policy needs.
Policymakers should be wary of the medical model of disability, with its language of diagnoses and dysfunction, and embrace the social model mandated by laws and statutes. The medical model’s categorisations are administratively useful, but it has many failings. It cannot represent the lived experience of disability, and may be exploited as a political tool to justify, through flawed arguments, the disenfranchisement of people with disabilities. Some authors in the special issue advocate the combined application of different models rather than their tensioned juxtapositioning.
The WHO’s International Classification of Functioning, Disability and Health and the UK’s impairment data harmonisation standard are starting points to better survey data that moves its focus from clinical diagnoses to an emphasis on impairments that are made disabling through social and environmental barriers, as the social model posits.
Qualitative data collection, while invaluable for fine-grained understanding of these barriers, would benefit from more inclusive best practice to ensure representation of those with the quietest voices or who are least able to participate in research. Individuals could, for example, be offered a choice from a toolbox of innovative data collection methods, such as drawing, photography and storytelling.
Overall, our contributors support an eclectic approach, where multiple epistemologies, methods, actors and disability models are matched to policy issues, and where people with disabilities are subjects – and better, participants – rather than objects within policy processes. Only in this way can policy be developed that reflects and connects the everyday lived realities of disability with the social and political structures and settings within which policies must be embedded.
We have re-issued the article that has already been published by the Evidence & Policy blog. We would like to express gratitude to the kind offer of the editorial board of the Evidence & Policy blog.
Original article URL:https://bit.ly/35miTW6
Carol Rivas is an Associate Professor in Social Policy and Programme Evaluation at the UCL Social Research Institute. Her research uses innovative methods to understand, communicate, and reshape the experiences of vulnerable people, focusing on hidden chronic conditions and disabilities, with a special interest in intersections with race, ethnicity and migrant status.
You can read the original research in Evidence & Policy:
Rivas, C. Tomomatsu, I. and Gough, D. (2021). The many faces of disability in evidence for policy and practice: embracing complexity. Evidence & Policy, DOI: 10.1332/174426421X16147909420727.
Image credit: Author’s own.
If you enjoyed this blog post, you may also be interested to read:
Taking a policy process approach to illuminate the political nature of disability policymaking