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.
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.
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.
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.
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 & Policyarticle, we explore the types of evidence that government uses to make decisions about how quasi-markets should run.
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!
‘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?
This special issue examines the relationship between disability, evidence, and policy. It considers the extent to which the demand for, production, and use of evidence in policy and practice takes account of disability perspectives. For example, disabled populations, already vulnerable, have been made more so throughout the COVID-19 pandemic, which highlights their disenfranchisement and marginalisation in relevant policy decisions. This outcome has sparked calls to action by disability advocacy groups and coalitions in the Global North and the Global South. These current events and responses provide a window of opportunity to reassess and change some of the entrenched systems that consistently exclude vulnerable groups such as disabled populations.