From “ineducability” to “rare disabilities”. Evolution and emergence of political categories involved in shaping the French medico-social sector

In France, a notion is currently the focus of a number of political debates, that of “rare disabilities”, a notion that does not seem to be used, or to a limited extent, in other countries. The aim of this article is to return to the history of this notion in France: when and why did it appear? What issue and what population does this category designate? To set the issues related to “rare disabilities” in the context of the French disability policy, the first section of the article traces the development of the medico-social sector at the end of the 1940s, on the basis of the notion of educability, superseding that of incurability on one hand, and the categorization of the populations of disabled persons in terms of impairments on the other hand. The second part shows how in this context, the issue of children with several impairments emerges and how, under the impetus of parents and health professionals, distinctions are formed within the category of multiple disabilities between “multihandicap”, “plurihandicap” and “polyhandicap”. The third section traces the appearance of the term “rare disabilites” in the context of a political decentralization in 1986, the construction of a new political and administrative category and the fluctuations of its definition, which currently falls short of the challenges raised by this complex form of disability. The fourth section shows how this new category became from 1998 on, a performative and pragmatic category leading to the creation of specific and original modes of care that challenge the traditional institutional approach of disability in a context of reform of the French disability policy. The article is based on an exploratory research that has consisted in an analysis of grey literature (legal texts, associations and working groups reports) concerning the notion of “rare disabilities”.     

Rethinking disability: Lessons from the past,questions for the future. Contributions and limits of the social model,the sociology of science and technology,and the ethics of care

In this article, I analyze one evolution in disability research over the past 30 years: the shift from an individual to a social approach to disability. While most disability research has currently “socialized” disability or at the least situates disabled people within a social context, not all do so in the same way nor based on the same assumptions. They lead to different concepts of the person and society and different concepts of disability and normalcy. I analyze this evolution by looking at three approaches to disability: the social model, the approach taken in the sociology of science and technology, and the ethics of care. I show how each, by renewing the analysis of disability, has brought about changes for disabled people and transformed ways of “living together” and “making society”. I also show the limits of these approaches and propose lines of thought for the continuation of our research, notably around the question of autonomy. I propose that we re-think autonomy from the standpoint of the notion of “recalcitrance”.     

Navigating the landscape of child disability measurement: A review of available data collection instruments

The United Nations Convention on the Rights of Persons with Disabilities adopted in 2006 holds States responsible to “…collect appropriate information, including statistical and research data, to enable them to formulate and implement policies…” This recognition has led to an increasing number of countries gathering data on disability at the population level; however, there are currently no gold standards for its measurement and different data collection tools have been used throughout the years to fulfil data needs. Understanding how these differences have influenced the measurement of disability globally is crucial to developing reliable and comparable measures. The purpose of this paper is to describe the varying scope and content of data collection instruments on child disability and to provide a historical snapshot of the rates of reported disability among children. A total of 716 data sources were identified, corresponding to 198 countries covering more than 95% of the world's children. The findings reveal a lack of consistent definitions and measures of disability, which contribute to major challenges in producing reliable and comparable statistics.     

Removing obstacles to equal recognition for persons with intellectual disability: Taking exception to the way things are

Article 12 of the Convention on the Rights of Persons with Disabilities challenges the misconception that persons with intellectual disability, among others, are not capable to take decisions for themselves. This paper first considers the right to equal recognition before the law within the light of the General Comment on Article 12 issued by the Committee on the Rights of Persons with Disabilities which emphasises the need to move away completely from substitute decision-making and to promote supported decision-making. The importance of Article 12 within the context of the Convention as a whole is also considered, together with the limited extent to which supported decision-making has been implemented. The paper argues that, with the exception of some jurisdictions, substitute decision-making is still seen as the best way to respond to the support needs of people with intellectual disability. While there are plenty of examples of supported decision-making practices being used in the daily lives of people with intellectual disability, these remain the exception. Crucially, decisions made in this way are not legally valid. What is needed therefore is a recognition that different people can take decisions using different methods, with or without support, and for these methods to become legally recognised.     

Turning disability experience into expertise in assessing building accessibility: A contribution to articulating disability epistemology

In this article, the authors elaborate on the issue of turning disability experience into expertise, and that of the development of disability epistemology. They do so by applying an approach transposed from the field of science and technology studies (STS). As a field and approach that departs from more traditional understandings of epistemology, STS could well serve the articulation of a proper disability epistemology, and as such it could inform the wider field of disability studies. To this end, the article focuses on a European city's Accessibility Advisory Committee (AAC), led by and (largely) composed of volunteering citizens living with an impairment. In order to influence the city's built environment, the AAC has to develop tools to translate its experience into something usable for the professionals (planners, architects, city council and city administrations) involved in the decision-making process. One tool the AAC uses is a move-through building assessment. The authors follow the devising and realization of such a move-through assessment organised by the AAC where people with different impairments together with nondisabled participants visit a recently finished building to assess its accessibility based on their proper experience. The empirical material comes from observations obtained through participant observation of the assessment, its preparation and the collective discussions afterwards. The analysis of the ethnographic material of this move-through assessment provides a rich understanding of how citizens with an impairment can impact their city's built environment and vice versa. Three strands are explored: How is the tool devised? How is it put into practice? How does it affect the participating actors?     

The convention on the rights of persons with disabilities and mental health law: A critical review

The Convention on the Rights of Persons with Disabilities is an international treatise about human rights that was adopted by the United Nations in 2006. Although it is a welcome articulation of the rights of persons with disabilities, a detailed review of the text detects some insufficiencies and challenges, especially when analyzed in light of people with mental illness. This paper aims at revising critically the text of the Convention in order to detect such troubles. It would allow us a better understanding of the text if we really want to protect and defend rights of persons with disabilities. Thus, in this paper the author will revise concepts used by the Committee and the Convention such as “disability”, “legal capacity” and “mental capacity”, “discrimination”. Moreover, according to the concept of “safeguards”, this paper will introduce psychiatric advance directives and shared decision-making as two tools in order to defend persons with mental illness. Both preserve the background of the Convention, such as respect for the dignity and autonomy, provide care without discrimination, and encourage rehabilitation, which implies a better quality of life.     

Two worlds,too apart to converge? A comparison of social regulation policies aimed at the employment of disabled people in Norway and India

The purpose of this article is to compare for the first time social regulation policies aimed to influence the employment of disabled people for Norway and India. This article situates the social regulation policy reforms and compare them to chart convergence within the policy goals and content for these two very different countries. The article relies on evidence from secondary sources, such as legislations, country reports and policy dossiers since early 1990s. The taxonomy of regulations, economic means and information strategies, popularly understood as “sticks, carrots and sermons” grounded in institutional theory, is employed to systematically analyse and present the similarities within social regulation policies. “The most instructive comparisons (…) are those that surprise” and through documentary analysis this article demonstrates that there is a surprisingly high degree of convergence concerning the social regulation policy goals and content for Norway and India. This article expands the boundaries of the still emerging field of comparative disability policy research and will help policy makers to understand the social regulation policy options in a cross-national perspective. The research findings reveal the need to uncover driving forces putting these countries on the path of policy convergence.     

Public perceptions of the rights of persons with disability: National surveys in the Republic of Ireland

Since 2006, three nationally representative surveys in Ireland have assessed public agreement to three rights inherent in the UNCRPD (United Nations Convention on the Rights of Persons with Disabilities): attendance at ordinary schools, to have sexual fulfilment and to have children. Three questions are posed in this paper: do the Irish public perceive people with different impairments as having the same rights? Are they more supportive of certain rights than others? How has public perceptions changed in 2017? The Irish public are more sympathetic to the rights of persons with physical and sensorial disabilities than to those with cognitive or emotional impairments. They are more supportive of people having sexual fulfilment than they are of school attendance. By 2017 they were more supportive of these rights and especially those of people with mental health difficulties. Monitoring public perceptions nationally would help to inform the advocacy and awareness raising efforts needed to make the public allies in achieving the Convention's aims.     

Core concepts of human rights and inclusion of vulnerable groups in the United Nations Convention on the rights of persons with disabilities

The Convention on the Rights of Persons with Disabilities (UN CRPD) was adopted by the United Nations General Assembly in 2006 and entered into force on May 3rd, 2008. The UN CRPD is the first legally binding international instrument with comprehensive protection of the rights of persons with disabilities, and sets out the legal obligations on States to promote and protect the rights of persons with disabilities worldwide. EquiFrame, a novel policy analysis framework, was used to evaluate the UN CRPD in relation to its commitment to 21 predefined core concepts of human rights and inclusion of 12 Vulnerable Groups. While a number of core concepts and vulnerable groups were found to be absent in the UN CRPD, and other core concepts mentioned only in a specified capacity, the overall quality rating for the UN CRPD when interpreted within the parameters of EquiFrame's summary indices was found to be high, placing it amongst the best policy instruments assessed using the EquiFrame methodology so far. Suggestions for how shortcomings can be addressed are made.     

In search of European disability policy: Between national and global

This paper examines the development of disability policy at the European level, from the mid 1970s to the present day, based on documentary research. The development of European policy discourses in this period reflects dramatic changes of thinking about disability that are also evident in global policy debates driven by activism from the international disabled people's movement. Early policy, based on discourses care and rehabilitation, aimed to compensate for the presumed limitations of individual disabled people but policy today is more concerned with human rights, citizenship, full participation and the removal of structural barriers to inclusion. The analysis draws on theories of disability, Europeanization, policy transfer and globalisation to explain European Union (EU) policy development and its uneasy relationship with national and global policy regimes. This analysis suggests a characteristically “European” policy project, involving a socially-oriented but legalistic rights-based discourse. Europeanization is challenged on two fronts: by high levels of national subsidiarity in relevant policy domains and by the emergence of new global regimes of governance (including the United Nations Convention in 2007). The most significant policy catalysts are now at the global level while the most significant implementation constraints are at the national level. Yet, European actors remain important, providing strong support for implementation in member states and as policy entrepreneurs on the global stage.     

Scandinavian disability policy: From deinstitutionalisation to non-discrimination and beyond

This article discusses recent significant moves in disability policy in two Scandinavian countries, Norway and Sweden. The aim is to outline the Scandinavian twist on ongoing international developments. The analyses are limited to two major reforms: (i) the shift towards community living and full deinstitutionalisation in the 1990s, and (ii) the introduction of social regulation as part of the disability policy system in the first decade after 2000, particularly legislation on non-discrimination and accessibility. Changes during the reform years and beyond are discussed, and current challenges regarding the two significant moves are outlined.     

The United Nations Convention on the rights of persons with disabilities: Opportunities and tensions within the social inclusion and participation of persons with disabilities

The United Nations Convention on the Rights of Persons with disabilities opens up opportunities to drive forward inclusive policy for people with disability. It also may serve as a benchmark for the evaluation of policy aimed at improving the lives of people with disabilities. For this to occur, it is vital to fix priorities for evaluation using participatory research methods that place disabled people and especially those who are ‘hard to reach’ at the heart of the participatory process. Within this process, it will be vital to stress the commonality of disability since the goals of different organizations representing disabled people may be in tension. It is also crucial when evaluating policy to be clear of ones definitions and aims. There are also fundamental tensions within the concept of social inclusion. In particular, it is vital to take into account the potential tension between a social justice agenda founded on redistribution or recognition. This may be particularly well-illustrated through the case of cochlear implants and infantile screening for deafness. Nevertheless, it is also equally crucial to preserve a space for both dimensions within the policy agenda. This may partly be achieved through participatory parity where all participants within the deliberative process have the possibility of equal status and voice. Ultimately, both tensions associated with the participatory process and the principles underlying inclusion will be resolved through making choices that are necessary for action. It is preferable such choices are made by disabled people themselves. Such choices may be informed through participatory action research in which disabled people are involved.     

The employment policy and vocational activity support system for people with intellectual disabilities in Poland

This short report discusses issues related to the employment policy and vocational activity support system for people with intellectual disabilities in Poland. The analyses are based on data from a broader research project entitled Employment and Disability. The reconstruction of the Vocational Experience of Persons with Intellectual Disabilities in Poland. The project sought to explore the work-related situation of persons with intellectual disabilities regarding the employment policy, support practices in workplaces, and vocational experience of employees with intellectual disabilities, their job coaches and the coordinators of employment projects. The methodological framework combined the grounded theory set in social constructivism, as presented in Charmaz's works, with discourse analysis and the sociologically-oriented analysis of practices. The data were collected in 25 workplaces employing persons with disabilities in various parts of Poland, mainly by means of in-depth interviews, observation, and field notes. Although analyses discussing the specificity of Polish employment policy indicate that the vocational activity of persons with intellectual disabilities is promoted in Poland, in reality its implementation is difficult. The difficulties result from the poor quality law regulating vocational activity, lack of adequate legislative solutions, barriers on the part of employers, and the absence of sufficient financial support.     

Making ends meet on disability benefits: How well do programs decommodify?

Decommodification, or the ability to maintain a reasonable standard of living when one is unable to participate in the labor market, is the principal objective of disability benefit programs. Prior research, however, has yet to fully investigate how well programs achieve this goal in the real world. This paper provides historical background on disability benefit programs and describes reforms made to these programs cross-nationally in the post-industrial era. The paper next evaluates how well disability benefit programs decommodify by drawing on data that encompasses nine countries and two disability policy regimes from the Survey of Health, Ageing, and Retirement in Europe. It concludes by discussing policy mechanisms to improve the decommodification objective of disability benefit programs, while presenting an agenda for future research.     

Employment opportunities for persons with different types of disability

The employment status of groups with different disabilities was analysed as were potentially important moderating factors (work ability, structural and individual factors). A secondary analysis was performed on 4359 respondents with disabilities from Statistics Sweden's Labour Market Investigation. The respondents were divided into six disability groups (communicative-hearing, communicative-speech-reading, communicative-vision, psychological disability, medical disability, physical disability). Logistic regression analyses showed that the probability of being employed was highest among respondents with hearing disabilities and respondents with psychological disabilities were least likely to be employed. Being a woman (very young or old) with only primary education and with partially or very impaired work ability, reduced employment opportunities. Higher education did not increase employment opportunities for respondents with impaired work ability. In summary, the type of disability is essential for employment opportunities, and differences between disability groups cannot be explained by differences in other variables. The moderating factors studied were found to be of equal importance in all groups.     

Active citizenship for persons with psychosocial disabilities in Sweden

As it is the case in many European countries, psychosocial disabilities have become an important concern in Sweden. Persons with psychosocial disabilities’ experiences of various societal domains such as school, work, family life, leisure activities and contact with welfare agencies need a complex analysis which takes into account both personal and contextual factors. This article draws on 15 interviews with informants with psychosocial disabilities and discusses their experiences and the difficulties that they met during their lives. These experiences are conceptualised with the framework of “active citizenship” developed by Hvinden et al. (2016), which distinguishes three core dimensions of active citizenship: security, influence and autonomy. The empirically grounded article discusses the opportunities and barriers that encourage or hamper persons with psychosocial disabilities to be active citizens in the Swedish welfare state and underlines some of the main challenges that stand in the way of their “full and effective participation in society” (CRPD, article 1).     

Accessibilité, politiques inclusives et droit à l’éducation : considérations conceptuelles et méthodologiques

The right to education promoted by the United Nations’ Convention on the Rights of Disabled Persons aims at fighting against discriminations persons with disabilities face in this matter. Identifying existing discriminations require however reliable data allowing for analyzing education systems’ ability to provide Special Educational Needs students with equal opportunities in terms of access, success, prospects and affiliation. This article describes the conceptual framework developed to identify indicators required to monitor the implementation of right to education in the European Union building upon an OECD research made on the transition to higher education and to employment of SEN students.     

Étapes et enjeux de la construction du handicap au sein des politiques sociales françaises : 1939–2005

Drawing on tools from the cognitive sociology of public action, such as frames of reference, the author analyses four pairs of concepts that seem to have been variably operational in France in the field of disability since the second world war: reeducation/maladjustment; integration/handicap; insertion/exclusion; inclusion/situation (of disability). Starting with childhood taken as an example, the author tries, for each pair, to specify the origins and the mediators, the stakes and the objectives, the criteria and the practical arrangements for action.     

Two factors,one direction towards social regulation policy convergence: Learning from policy experts in Norway and India

Two significantly different countries such as Norway and India have adopted similar social regulation policies aimed at the employment of disabled people since the 1990s. Countries can adopt social regulation policies, such as anti-discrimination provisions, owing to multiple factors. This article uncovers two common factors leading to policy convergence within social regulation reforms aimed at the employment of disabled people in Norway and India. An exploratory qualitative case study was conducted, wherein 25 policy experts (11 from Norway and 14 from India) were interviewed. Findings from expert interviews indicate that the observed policy convergence are connected to two trends that can be detected both in Norway and India. The first concerns the influence of international treaties; the second concerns grassroots mobilization of disabled people and their organizations. Findings point towards increasing internationalization of social regulation policies and these policy developments transcend the global North and global South divide.     

When Organ Donation from Living Donors Serves as the Main Source of Organ Procurement: A Critical Examination of the Ethical and Legal Challenges to Turkey's Recent Efforts to Overcome Organ Shortage

Despite the fact that Turkey has implemented a number of legislative and regulatory efforts to increase cadaveric donations, live donors still serve as the main source of organ procurement in this country. To address this problem, Turkey's regulatory authorities have sought to increase the number of brain death declarations. A new regulation issued in 2012 repeats the criteria for brain death that were first issued in 1993. This paper argues that these efforts are far from adequate owing to a number of complicated, ethical, and legal challenges that must be addressed to increase cadaveric organ donations. After examining these factors, which are completely neglected in current policies, we conclude that Turkey needs a realistic ethically justifiable organ procurement policy that must be supported by a framework of patient rights to implement the concept of patient autonomy and respect for human dignity in health care services as the primary goal.