Professor of Disability and Community Inclusion Sally Robinson (Flinders University, Australia) and Professor Karen Fisher (Social Policy Research Centre, UNSW) are inviting contributions to a forthcoming Elgar Handbook on Disability Policy.
This handbook considers the impact on policy of understanding disability through a human rights framework. It argues that the current language, law and concepts about human rights are changing the way that policies are framed and implemented. It seeks to understand when policies are consistent with a rights approach; and how welfare, medical and economic approaches are incorporating a human rights understanding of disability. Parts 1-4 focus on four complementary or competing approaches to policy: human rights, welfare, medical and economic. Each part includes a conceptual chapter and topical issues. The Handbook will thus provide a thorough overview of both fundamental and new directions of knowledge on this policy topic. It will be aimed primarily at policy makers, researchers, professionals in relevant fields, disabled persons organisations and disability services as well as academic and postgraduate audiences.
Authors are invited to propose chapters that consider policy about the rights of people with disability from various disciplinary perspectives, including disability studies, sociology of disability, geographies, legal studies, health sciences (critical perspectives), science and technology studies, broader humanities and cultural studies and interdisciplinary approaches. We particularly welcome contributions from researchers whose research practices position people with disability at the centre of projects, working with them, and ensuring that their views are sought, understood and conveyed to a wider audience. Contributors to each part will be invited to participate in an online forum to present and discuss their work during the writing process.
If you are interested in contributing to this Handbook, please send a 300-word abstract together with a 100-word biography for each author by 17 October 2020. If the abstract is accepted (with revisions where necessary), the full paper will be required by 30 April 2021 for peer review and editing. Acceptance of the abstract at the proposal stage does not mean an automatic acceptance of the chapter that is eventually submitted, even after the review process.
The book has an introduction, conclusion and four parts. The introduction describes the diverse conceptual approaches to disability policy, which sometimes operate in conflict or to exclude others. It makes the argument for critiquing disability policy through the lens of human rights.
Parts 1-4 focus on the four complementary or competing approaches to policy: human rights, welfare, medical and economic. Each part includes a conceptual chapter and topical issues. The range of international authors will consider policy process, outcomes and impact; global south/north context; contemporary issues including globalisation, climate change and technology.
Personal narratives from people with disability about their policy experiences will be included in each part in the form of short essays, photos and illustrations. These will be integrated into the more traditional chapters. These seek to make visible the effects of policy in the lives of people with disability.
It is anticipated that the Handbook will contain 25-30 chapters that, together, address the policy topics listed above. When considering which contributions to accept, a balance will be sought between adequately representing the four key policy topic areas, the inclusion of diverse authors, addressing a wide range of policy issues encountered by people with disability, and the conceptual and methodological range.
Chapters are to be a maximum of 8000 words each, including references. Suggested key words for the index should also be listed. There will be no footnotes, but endnotes can be accommodated. Illustrations, figures, tables and notes can be accommodated but should be minimised. No copyrighted material can be included.
The narratives from people with disability will be interspersed among the chapters. It is expected that authors will engage with the narratives in the development of their papers (at the least, providing reflective note at the end of the chapter) to weave them into the dialogue of the book.
Human rights is a useful lens to critique disability policy because it encompasses both conceptual and governmental understandings of the relationship between citizens and states. Sociological and philosophical concepts of human rights view rights as universal, common to all persons. From these disciplines, a person’s human rights are understood as interdependent with those of others, within the social context of their society. These concepts of rights interleave with related social frames of justice and distribution.
Equally, from a policy or legal perspective the concepts and language of human rights speaks to the obligations of the state and the responsibilities of citizens – when is the state obliged to intervene to promote or protect the rights of some citizens disadvantaged by the actions of others. Both the conceptual and legal application of a human rights frame can be understood as consistent with social perspectives, social models and social relations of disability, when read with this contemporary frame of interdependence and within a social context.
Policy that affects people with disability can be informed by a critique through the lens of human rights, irrespective of simultaneous welfare, medical and economics policy drivers.
All three welfare, medical and economic frames resonate with historical and current policy drivers in the Global South and Global North. The immediate focus on physical and material survival of people with disability has often trumped other rights, sometimes necessarily. However, human rights even in these extreme circumstances, whether driven by austerity or disaster, can inform competing policy drivers. Is policy justifiable that a child injured and seemly orphaned in a disaster be institutionalised; or that policy condone that a homeless young woman with cognitive impairment subject to repeated sexual assault be sterilized? With a human rights framing, the value base for disability policy that focuses on the person within their social context is clear.
The frame positions people with disability alongside and relative to other citizens in relation to the state in their time and place. So in answer to the stark questions above, as other children in a disaster are placed in family based care, children with disability can be respected in the same way; and as other young women are protected from sexual assault, so too homeless young women with cognitive impairment have that right.
It is for these reasons that this book applies a human rights frame to understand the quality and implications of disability policies, whether intentionally or historically driven by human rights, welfare, medical or economic values. It seeks to understand when policies are consistent with a rights approach; and when welfare, medical and economic approaches incorporate a human rights understanding of disability. It focuses on contemporary empirical experiences of policy by people with disability. Its goal is to inform future policy, to ultimately bring the lessons of change to further the rights of people with disability in whatever their social context.
Part 1 Human rights
Conceptual chapter author: Professor Sophie Mitra, Fordham University
Despite the ratification of the United Nations Convention on the Rights of Persons with Disabilities in 161 countries, human rights are far from being realized for people with disabilities. Formal legal guarantees are by no means sufficient. The design and operationalization of appropriate policies is essential for the progressive realization of human rights.
Policies that affect people with disability can be developed, informed and assessed through the lens of human rights. Human rights are not limited to civil and political rights. Of fundamental importance are also economic and social rights such as the right to food, the right to education, the right to housing, the right to work, and the right to social security. In fact, economic and social rights are largely what disability policies tend to relate to. Public policies may neglect access to services for people with disabilities and fail to address discrimination that denies opportunities leading to grave shortcomings in rights fulfillment.
The chapters in the first part of the book will seek to understand when policies are consistent with a rights approach. They will present different ways to frame and operationalize a human rights approach to contemporary policies with a focus on how persons with disabilities in the Global North and South experience them.
Intersection of human rights and disability rights – and articulation in policy - global/national
Possible focus areas:
- Disability activism and rights activation
- Legal and policy rights intersections
- Tensions and limits in enacting human rights in non-signatory countries Abrasion of human rights through policy constructions
- Operationalizing human rights in a climate of austerity
- Embedded cultural cognitive worldviews: transnationalising disability policy from a Global South standpoint
- Employment, housing, education, health
- Safety and freedom from abuse
- Climate change
- Build environment accessibility
- Gender struggles
- Cultural and diversity
- Poverty and disability
Part 2: Welfare discourses
Conceptual chapter author: TBC
Historically, disability specific policy emerged out of welfare concepts, from a concern for people who were poor and destitute. The roots of this framing stemmed from charitable acts of the community, religious bodies, and eventually the state. It emphasised the dependence and passivity of people with disability, and the legacy of that history remains in much policy. More recent welfare approaches informed by human rights focus on the agency, interdependence and social context of people with disability.
Constructions of people with disability as clients/customers/users and resistance/alternatives
Possible focus areas:
- Resistance to dominant welfare discourses (empowerment, inclusion, citizenship models)
- Inclusive policy analysis
- Entanglements with disability services
- Partnership approaches with government/NGOs
- Authority of lived experience (eg Indigenous)
- Rise of third wave inclusive research
- Creative policy design/ implementation case studies
- Age (comparative or case study)
Part 3: Medical conceptualisations of disability and the international classification of functioning (ICF)
Conceptual chapter author: Jennifer Smith-Merry, Head of Discipline Behavioural and Social Sciences in Health Director of the Centre for Disability Research and Policy, University of Sydney
Historically medical paradigms and diagnostic criteria have dominated disability policy frameworks and their operation, but, paradoxically, neglect of the health needs of people with disability was and still is a common experience. Medical-focused frameworks are generally also individually focused and seek to identify, fix or prevent impairment or difference in people’s bodies. The impact of this frame is a resulting policy focus on disability being an essential and diagnosable state in an individual, with the onus then on providing mechanisms that assist the individual to adapt and accommodate to the majority environment.
Shifts to bring together a medical understanding of disability with the broader social models of disability and human rights have resulted in categorisations such as the ICF (International Classification of Functioning, Disability and Health), applied at the person and population level. The ICF focuses in on body functions, activities and participation, and the environment or context surrounding the individual. The ICF approach, or parts of the ICF model, remains the dominant framework for most Global South disability policy.
Rights surrounding health, wellbeing and access to health and other services, should be shared with all citizens, and not dependent on a medical understanding of disability.What can we take account of from the ICF model, which straddles multiple ways of thinking about disability, to acknowledge the complex reality of material bodies?
Problematising the dominance of medical paradigms/diagnostics in disability policy frameworks (but also paradoxically the neglect of health)
Possible focus areas:
- Nexus between diagnosis, funding and policy
- Intersections between jurisdictional policy conflict and lived experience (boundary issues and lived disadvantage – e.g. swallowing support)
- Health disparities – access to services
- Preventable/premature death of people with intellectual or psychosocial disability
- Digital rights, technology and disability
- Intersection and valuing of health and legal rights
- Right to life, birth and death
- Chronic health conditions and disability
- Social determinants of health and disability
- Bodies, interventions, robotics
- Climate change environmental impacts for disability
Part 4: Economics of inclusion
Conceptual chapter author: Daniel Mont, Centre for Inclusive Policy and University College London
Economics is often at the heart of promoting and crafting inclusive policies. This section of the book will explore the economic implications of inclusion, but always keeping in mind the human rights framework. Economics provides essential information for developing, implementing, monitoring and evaluating policies but when divorced from a human rights perspective they can lead to unintended consequences that undermine the progression to a fully inclusive society.
Economics considerations comes into play when developing inclusive policies for several reasons. First, because of the economic impact that disability can have on families. Globally, data shows that disability is linked to lower earnings and poverty. It also has been shown to impose extra costs on families, both in terms of expenditures on disability specific items, such as assistive devices, and on general items for which they often have a higher need, such as medical care. Estimating those extra costs is challenging – especially since recent studies show how much they vary. The wide variance in the nature and scale of those costs also creates challenges for how to incorporate them into the design and delivery of social protection programs aimed at promoting participation.
Secondly, considerations arise because of the economic costs of exclusion on society in general, most clearly in the lost economic productivity of people with disabilities who face barriers to work and of family members who must often provide support needs because of the lack of accessible services. Inclusive policies must consider the costs of exclusion (and conversely the benefits of inclusion) and be careful not to enact policies that create disincentives to economic participation.
Finally, inclusive policies have budgetary implications, both in terms of the costs associated with implementing them and the benefits they may produce. This leads to the demand for cost-benefit analyses. Governments and international agencies often want evidence for the "business case" for inclusive development. This way of thinking about policy can be at odds with a human rights approach for a variety of reasons. First, how does one monetize things like dignity and sovereignty? Second, how does it square with universal human rights? If all children have the right to an education – as codified in the Convention the Rights of the Child and the Convention on the Rights of Persons with Disabilities – then how can movements toward inclusion be halted because they entail costs? Are other basic rights for sale, as well?
Practical challenges also exist with cost-benefit analyses. Following on the example of education, if the economic costs are short term but the benefits are long term will governments – who are often in power only in the short term – be willing to bear those costs? The economic benefits of inclusive education are dependent on the inclusivity of the labor market. In making long term projections of the economic benefits, then, how should we estimate the economic impact of possible educational reforms when we only have employment data from past policies? What if the budgetary costs of a policy are incurred by one ministry but the budgetary savings are enjoyed by a different ministry? Is the cost-benefit analysis done within a sector or across all sectors?
For this reason, a cost-effectiveness approach might be more appropriate. That is, accept that inclusion is a right and must be addressed – albeit in a progressive fashion consistent with available resources – but that it must be done in the most efficient way possible. Cost-benefit analysis leads to action only when the monetary return is bigger than the next best remunerative investment. Cost-efficiency take the goal as given but tries to maximize outcomes given the available resources. However, even here issues of human rights come into play. Quite often people espousing cost-efficiency focus on "low hanging fruit." While this may help many people with disabilities participate quickly in the short run with a low per capita expenditure (typically those with more moderate disabilities), it can then raise the cost (and especially the per-capita cost) of efforts to subsequently reach people with higher support needs, thus creating resistance to being fully inclusive.
An economic lens is important for zeroing in on policy levers that are fundamental to people’s economic well-being, and on evaluating the most cost-effective way of addressing exclusion, but that lens should be wide enough to incorporate the fundamental notion of human rights. The chapters in the section of the book will attempt to do that.
Economic outcomes and costs of inclusion and exclusion, labour market, consumption, other participation
Possible focus areas:
- Socioeconomic disadvantage
- Social protection policy
- Costs of exclusion and costs of living with a disability
- Universal design and the policy and regulatory tangle
- Global South – entrepreneurship
- Global North – austerity
- Digital divide
- Effects of material barriers to social inclusion, poverty, violence
- Inclusive education, mobility and poverty
- Disability employment policy and entrepreneurship
- Globalisation effect on disability
- International institutions and disability – WHO, UN, IMF