The double bind of social legitimacy: On disability, the sick role, and invisible work.

During the last few decades, the human rights paradigm has shifted the normative status of disabled people, providing, in principle, the right to full and equal participation. Particularly in neoliberal economies, however, participation in work life is a major constraint on social legitimacy, creating a predicament for people who cannot adhere to the ideal of the 'productive member of society'. In this article, I explore this predicament at the intersection of disability studies and the sociology of health and illness, reviewing literature and discussing key concepts. I argue that in neoliberal societies, two distinct and largely incompatible pathways to social legitimacy depend, respectively, on (a) a version of the classical sick role and (b) a more recently constituted able-disabled role. Of these, the first pathway has mainly been explored and critiqued in the sociology of health and illness, while the second features mainly in disability studies. However, both pathways can be understood (1) as ableist mechanisms for maintaining adherence to values of productivity and by (2) imposing on disabled people an unequal burden of invisible work-a key feature of ableism, driving inequality both within the group of disabled people and for the group as a whole.

Early-life impairments, chronic health conditions, and income mobility.

Individuals who have congenital conditions or become disabled early in life tend to have poorer educational and occupational outcomes than non-disabled individuals. Disability is known to be a complex entity with multiple causations, involving, inter alia, physiological, social, economic, and cultural factors. It is established that social factors can influence educational and occupational attainment for disabled people, and current disability policy in many countries, particularly in the Global North, stress the importance of equality of opportunity. However, there is a scarcity of research that explores the specific degrees to which advanced welfare states contribute to the equalization of life chances for individuals with early-life impairments and chronic health conditions. In this study, we use a Norwegian sample of high-quality register data on individuals with vision loss, hearing loss, physical impairment, type 1 diabetes, asthma, and Down syndrome diagnosed early in life and compare their intergenerational income mobility trajectories with a random sample drawn from the country's entire population. We find that individuals' early-life diagnoses are linked to significantly worse income outcomes in adulthood than what is observed among the general population. We conclude that even in one of the most advanced egalitarian welfare states, such as Norway, much remains to be done to equalize life chances for individuals with early-life impairments and chronic health conditions.

No evidence that social-democratic welfare states equalize valued outcomes for individuals with disabilities.

It is acknowledged that generous welfare states can provide better outcomes to their populations in terms of objective and subjective indicators of well-being, yet there is little comparative evidence of the role that the welfare state regime plays in lessening disability-based inequalities. Using a large comparative data set of most European societies, Tukey's honestly significant difference and generalized Hausman tests for six welfare state regimes, we examine the assumption that social-democratic countries perform better in mitigating disability-based inequalities than conservative, liberal, Southern, Eastern European, and the former Soviet Union welfare state regimes. We compare the valued outcomes for individuals with and without disabilities regarding their education, labour market participation, material well-being, and life satisfaction. The main finding of this study is that the most generous welfare states in Europe do not perform better, and in some cases, perform worse, than other less comprehensive welfare state regimes in closing the gap in valued outcomes between individuals with disabilities and the rest of the population. We discuss potential explanations of these inequalities such as the nature of expectations and changing characteristics of welfare state regimes, and difficulties related to measuring disabilities across European societies.

Rethinking long-term condition management: An actor-level framework.

To understand the complexities of managing long-term conditions and develop appropriate responses, micro-, meso- and macrolevels must be considered. However, these levels have not been combined in a single analytical framework of long-term condition management (LTCM). This article aims to describe a framework of LTCM practice and research that combines societal levels and key agents. The actor-level framework, based on the works of Abram De Swaan and Randall Collins, provides a broader understanding of LTCM as an interdisciplinary research field compared to previous contributions. The framework has three main advantages. First, it encourages knowledge production across levels and actors that address the complexity of long-term illness management. Second, it broadens the scope of LTCM as an interdisciplinary research field and practice field. Finally, it facilitates the integration of knowledge production from different disciplines and research traditions. The framework could stimulate interdisciplinary research collaboration to enhance knowledge of processes and interactions influencing the lives of individuals with long-term conditions.

Generating a Social Movement Online Community through an Online Discourse: The Case of Myalgic Encephalomyelitis.

Online communities, created and sustained by people sharing and discussing texts on the internet, play an increasingly important role in social health movements. In this essay, we explore a collective mobilization in miniature through an in-depth analysis of two satiric texts from an online community for people with myalgic encephalomyelitis (ME). By blending a sociological analysis with a rhetorical exploration of these texts, our aim is to grasp the discursive generation of a social movement online community set up by sufferers themselves to negotiate and contest the dominating biomedical perception of their condition.

The social meaning of disability: a reflection on categorisation, stigma and identity.

As disability becomes an ever more salient concept in international political and legal discourse, its social meaning must be better understood. Traditionally defined in medical terms and as an individual problem, it has for the last several decades increasingly become a socio-politically defined phenomenon. Disability pride has emerged as a social movement patterned after ethnic minority and sexual orientation movements. The one billion people who count as disabled nevertheless have illnesses and impairments that are largely understood as medical problems. Medicine continues to exert great influence on the social meaning of disability in general and the social valuation of various illnesses and impairments in particular. Whereas specific conditions may be socially valued, the overall category and label of disability connotes marginality and stigma. Under these conditions, disability policy, which ought to be a universal concern, risks being construed as a marginal and special-interest issue rather than a broadly relevant topic; this has potentially negative consequences for the majority of disabled people.

ILLNESS IS WORK: Revisiting the concept of illness careers and recognizing the identity work of patients with ME/CFS.

The concept of careers has an extensive history in the sociology of health and illness. Among other things, the notion of a career has been used to describe the changing identities of patients diagnosed with mental illness, to identify distinct stages in the progression of various illnesses, and to recognize the cooperative efforts of hospitalized patients. However, the career concept may be reanalyzed as part of an analytical metaphor that makes salient both the agency of people with illnesses and the social structures in which they are enmeshed. This metaphor, ILLNESS IS WORK, can valorize and aid understanding of the identity work and actions of patients with chronic illnesses, particularly illnesses with a low degree of social recognition and medical prestige such as myalgic encephalopathy and chronic fatigue syndrome.

Prestige rankings of chronic diseases and disabilities. A survey among professionals in the disability field.

Disabled people constitute the world's largest minority; too little is known about the internal structure and valuations of that minority. We investigate whether prestige rankings of different chronic diseases and disabilities can be elicited from a community of disability non-governmental organizations (NGOs). A survey was performed in a sample of NGO professionals in Norway in late 2013 and early 2014. Two copies of a questionnaire was sent to 92 national and regional offices of disability NGOs requesting a response from either senior employees or elected officials, preferably one of each. Outcome measures were ratings on a 1-9 scale of the prestige these respondents believed most professionals in their field would accord to a sample of 38 different conditions. We find that there is a prestige hierarchy of chronic diseases and disabilities in the disability field. In this hierarchy, somatic conditions that are strongly associated with medical treatment were placed higher than either conditions that are characterized by permanence, or conditions are associated with psychosomatic etiologies. The elicited prestige hierarchy is at odds with prevalent normative positions in the disability field; there is a lack of fit between some of the field's central political goals and its internal evaluations. We propose that its structure can be explained through a) influence from the medical field, b) organization history, size, and prominence, and c) issues of credibility, shame and blame. Further research should be conducted into the structure and valuations of the disability field in general and people with disabilities and chronic diseases in particular.