The reception of disability-related social rights (disabled adult benefit, disability compensation benefit) is marked by a paradox: although they are factors of autonomy, they are perceived negatively. This chapter explains this paradox by the link between rights consciousness and the administrative relationship. The effectiveness of benefits is diminished by the ways in which they are implemented and by users’ perceptions of this process. The experience – and expectation – of heavy supervision, conflicts over needs assessments and disability levels, interruptions in payments, and unmanageable delays create a lack of trust and predictability, as well as a perception of disrespect. Social rights then fail in their capacity to reduce uncertainty and to act on people’s perception of their social status by making them subjects of rights. Whether the eventual outcome is non-take-up, or distrustful or reluctant take-up, rights consciousness is therefore tenuous and unstable.
This concluding chapter sums up the main conclusions of the book that justify speaking of ‘fragile rights’: often imprecise from the moment they are legally enshrined, disability-related rights suffer from major shortcomings in terms of effectiveness in all the studied areas (education, employment, social policy, accessibility). Faced with these imperfectly realized rights, many individuals protest (at least in the interview situation) and take action, negotiate, tinker, adapt, to make their rights more concrete, and in the same movement, to assert themselves as subjects of rights. This everyday politics takes place at a distance from the collectives involved in the politicization of disability, whether they be associations or public officials, towards whom several people make a demand for descriptive representation.
The French version of this book was the winner of the 2022 Grand Prix de la Protection Sociale.
Over the years, many disability-related rights have been legally recognized, but how has this changed the everyday lives of people with disabilities?
Drawing on biographical interviews collected from individuals with either mobility or visual impairments in France, this book analyzes the reception of disability policies in the fields of education, employment, social rights and accessibility. It examines to what extent these policies contribute to the realization of the associated rights among disabled people. The book demonstrates that the rights associated with disability suffer from major implementation flaws, while shedding light on the very active role of disabled citizens in the realization of their rights.
In spite of some improvements, the built environment and public transportation are far from being fully accessible. Moreover, in 2014 the government has reneged on a legally enshrined right by postponing the accessibility mandate. This chapter analyses the reception of this partially implemented policy and the difficulties it creates for disabled people in their everyday lives. Through a policy feedback effect, the 2014 reform has produced discontent, fuelling a relative deprivation that, at this stage, is leading more to individual than collective actions. But public space is not only materially hostile to disabled people; it is also symbolically so, as one of the main places in which they experience stigmatization. Taking these various dimensions into account makes it possible to specify the social, and not only material, conditions of a real right to mobility.
This introductory chapter develops a theoretical framework combining policy analysis (with an approach in terms of policy reception) and the sociology of law (through the study of rights realization at the individual level) to address the main question raised by the book: to what extent and how does policy reception enable disability rights to become effective in people’s experience? It presents the French context of disability policy and rights, and the methods of the study, drawing on biographical interviews.
This chapter revisits the distinction between special and inclusive education by distinguishing type of schooling, accommodations available, and changes in teaching formats. This framework is then used to analyse the reception of the gradual shift towards a promotion of mainstream schooling in France. In terms of policy reception, the comparison between different generations reveals an objective effect of the promotion of mainstream schooling on educational trajectories (where one is schooled) and expectations (what one subjectively values). Yet the narratives also show the major obstacles to a full realization of the right to inclusion, and the very active role of students and families to overcome them.
In France as elsewhere, disabled people suffer from structural marginalization in the labour market. Employment-related disability rights crystallize the ambivalence of disability policies: between an assumed inability to work that entitles people to benefits and the promotion of workforce participation; and between sheltered employment, quotas, and anti-discrimination. Employment might therefore appear to be the area where disability rights are the most fragile. The chapter shows, on the contrary, how this coexistence of divergent orientations can be analysed as their strong point, potentially opening more opportunities for individuals. After a review of the history of disability policies in the field of employment, the chapter analyses how disabled people negotiate a marginal place in the labour market, in dynamics that combine structural inequalities and the reception of public policies. It then focuses on the effects and appropriations of the flagship measure in this domain, the quota scheme.
Drawing on qualitative interviews and focus groups with 35 community leaders, this article investigates how community leaders understand norms of care for older people in Zambia. I ask what leads older people in Zambia to receive good care from family. The findings show that across both rural and urban settings, respondents related profoundly powerful norms of reciprocity in both family and community care, with older people viewed as reaping what they have sown in terms of religious and economic contributions throughout their lives. The study raises challenging questions from a rights-based perspective as to who is deserving of care.
In this study of older migrants living in informal settlements in Harare, we seek to understand what care and caring means for older people ageing far from their place of origin in conditions of informality in a country with no formal care infrastructure. We find that care relations derive from histories of migration, community, kinship, aspiration, displacement and disenfranchisement, with the provision of security within insecure systems core to the very idea of care. Further action is needed at all levels to foreground how older migrants are living on Zimbabwean society’s margins and to facilitate their daily practices of care.
Compared with their peers, young carers are at a higher risk of being not in education, employment or training. Using Arksey and O’Malley’s framework, this review aims to map out the literature on young carers’ experiences of caring while attending school and their future career perceptions. The key themes that emerge from the literature include: the impact of the caring role on education and future aspirations; school awareness and multiagency support; and the positives gained from caring. Greater support in secondary school, along with multiagency collaboration, are highlighted as key influences on the likelihood of young carers maximising their career opportunities.