Mapping Invisible Work: Conceptual Tools for Social Justice Projects

Feminist scholars developed the concept of “invisible work” in the 1980s to bring sociological attention to work that was unpaid, unrecognized, or undervalued. Since then, it has become clear that the “generous” concept of work can be applied more broadly and that bringing invisible work into view may help to advance projects of social justice and inclusion. Drawing on the example of healthcare access for deaf patients, this article explores strategies for deploying the generous concept of work in institutional analysis.     

Heterosexism,racism, and mental illness discrimination: Experiences of people with mental health conditions and their families

Experiencing discrimination related to race/ethnicity, sexual orientation, or having a mental health condition is associated with negative outcomes. Research comparing types of discrimination or considering intersectionalities is lacking. This study reports findings from interviews with people with mental illnesses (PWMI) or family members of PWMI; all study participants also are of color and/or lesbian, gay, or bisexual. Findings include the following: participants experienced multiple forms of discrimination, mental illness discrimination shares characteristics with racism and heterosexism, and heterosexuals and people of color reported more mental illness discrimination than their counterparts. Implications for change advocates, mental health providers, and researchers are offered.     

Unreasonable adjustments: the additional unpaid labour of academics with disabilities

Abstract

Two recent contributions to this section have drawn attention to the barriers which academics with disabilities have to navigate in academia where ableism “is endemic” (Brown and Leigh, 2018 Brown, N & Leigh, J (2018) Abelism in academia? Where are the disabled and ill academics. Disability & Society, 33 (6): 985–989.[Taylor & Francis Online], [Web of Science ®] , [Google Scholar]: 4). Hannam-Swain (2018 Hannam-Swain, S (2018) The additional labour of a disabled PhD student. Disability & Society, 33 (1): 138–142.[Taylor & Francis Online], [Web of Science ®] , [Google Scholar]) highlighted the additional intellectual, emotional and physical labour required of her as a disabled PhD student, and Brown and Leigh (2018 Brown, N & Leigh, J (2018) Abelism in academia? Where are the disabled and ill academics. Disability & Society, 33 (6): 985–989.[Taylor & Francis Online], [Web of Science ®] , [Google Scholar]) queried “where are all the disabled and ill academics?” However, Brown and Leigh primarily focus on those with invisible “conditions” and the dilemmas raised by disclosure in a context where such conditions negate academic status and credibility. In contrast, since my “disability” is visible, I do not share the dilemma/“luxury” of secrecy. My presence announces my status before me, and this negates my personhood altogether in academic settings. It also places a burden of additional unpaid labour upon me which has significant mental health and career impacts as well as violating principles of equality.     

Gendered,Invisible Work in Non‐profit Social Service Organizations: Implications for Worker Health and Safety

Nonprofit organizations (NPOs) play an important role in the provision of health and social services. In Canada the nonprofit sector includes 7.5 million volunteers and employs over 1.6 million paid workers. The sector is overwhelmingly female‐dominated — women make up over 80 per cent of workers in these nonprofit services. Work performed by women has traditionally been undervalued and invisible. It has often been considered safe by researchers, employers, policymakers and sometimes even workers themselves. Although there is some indication that jobs in the restructuring social services sector can be characterized by constant demand, high stress and violence, research into the working conditions and health hazards of these types of jobs has not been a priority. Using data from a qualitative study examining work in NPOs, we trace the ways that work performed in these workplaces is both gendered and invisible. We identify three types of invisible labour. ‘Background work’ facilitates and supports more visible and recognized organizational activities. Certain organizational language obscures the full spectrum of work that takes place in the organizations and the risks it may involve. ‘Empathy work’ includes the relationship building, counselling and crisis intervention that comprise key components of social service delivery. ‘Emotional labour’ involves the management of client emotions and workers' own emotions in the process of working with clients and delivering care under conditions of scarcity and contraction. The invisibility of these activities means that much of the day‐to‐day work done in the organizations, while particularly important in the context of social service restructuring, is taken‐for‐granted and undervalued by organizational outsiders. As a result, many of the hazards present in the jobs are hidden from view and workers' health may be compromised. We argue that the invisibility and taken‐for‐grantedness of certain types of work in NPOs is reflected in, and constitutive of, particular exclusions and shortcomings of current occupational health and safety systems designed to protect the health of workers.     

Staff characteristics and the exclusion of persons with disabilities: evidence from the microfinance industry in Uganda

This study uses survey data from the microfinance industry in Uganda to investigate whether there are differences among industry staff members in beliefs and views regarding persons with disabilities. For several of the questions, various staff sub-groups respond significantly differently. A recurring result is that staff members who have a relative with disabilities often express views that differ from the views of other staff members. Moreover, we find significant differences related to the age of the staff members. For instance, younger staff members are more positive and optimistic regarding the potential to reach more clients with disabilities. The employment position of the individual staff member also appears to be relevant: credit officers are relatively more likely (than other staff types) to indicate that discrimination could be a problem in the microfinance industry. Interestingly, we do not observe any differences in views and beliefs that are related to staff member gender.     

Experiencing Stigma and Exclusion: The Influence of Neoliberal Perspectives,Practices, and Policies on Living with Chronic Illness and Disability

Neoliberal perspectives, policies, and practices increasingly affect chronically ill and disabled people's embodied experiences of stigma and exclusion. Neoliberalism emphasizes individual responsibility and self-sufficiency, a limited social safety net, and narrow governmental accountability. Examining pivotal experiences of chronically ill people shows how neoliberalism can frame their alternatives, interactions, and actions. This examination prompts reconsidering Goffman's concept of stigma to include how larger social policies and practices affect experiencing stigma and exclusion and, also, illuminates temporal features of receiving a diagnosis, disclosing illness, and dealing with disabilities and unpredictable bodies. The analysis derives from an ethnographic story and published and unpublished personal accounts from first-hand and library research over the course of my career.     

Caring for people with intellectual disabilities in poor rural communities in Cambodia: experience from ADD International

The burden of care for a disabled relative traditionally falls on women: mothers, wives, sisters. In Cambodia, Khmer culture is strongly structured around the family unit within which both the role of women and discrimination towards people with disabilities are sanctioned by social hierarchy, perceptions of weakness, and the concept of karmic merit. This article explores the impact of ADD International's project in Cambodia to support people with ‘intellectual disabilities’ – that is, learning disabilities – and aims to assess how this work affected carers, the majority of whom were women.     

ESS presidential address, 1995—invisible differences: On the management of children in postindustrial society

Drawing on data gathered through qualitative techniques, I suggest that the management of problems faced by children with a specific invisible neurological difference, attention deficit/hyperactivity disorder, teaches us about problematic areas of postindustrial society. I pay particular attention to how members of the children's and parents' separate moral universes assign stigma and to such behavioral-management techniques as patterned scheduling and “super-momming.” The problematic areas of contemporary life that I identify include the call for social conformity in the face of an ostensible demand for flexible social arrangements. Presidential Address delivered to Eastern Sociological Society, Philadelphia, PA, April 1, 1995.     

Invisible boundaries within the middle class and the construction of ethnic identity

ABSTRACT

This article explores the integration of ethnic minorities into the middle class in a novel way. Current literature examines the existence of boundaries and the ways they construct ethnic identifications through visible acts. One line of research perceives the middle class as a homogenizing platform that lowers residential segregation and labor market discrimination, while another demonstrates how stereotypes and an occupational glass ceiling continue to operate, reinforcing minorities’ ethnic identifications. By contrast, this article demonstrates the significance of invisible boundaries for the study of ethnicity in the middle class. I center on the ways whereby microaggression, namely tacit everyday insults, signifies an ethnic difference between middle-class adolescents. Analyzing adolescents’ narratives shows how the classification of spaces has given rise in minority adolescents to inner experiences of incongruence and subordination. By constructing an ethnic identity that prevents adolescents perceiving themselves as middle-class subjects, invisible boundaries reinforce the ethno-class order.     

Intellectual disabilities,violent conflict and humanitarian assistance: advocacy of the forgotten

This article examines the experiences of people with intellectual disabilities in violent conflict who have been neglected in practice and academia. Such invisibility, combined with the disabling impact of society, their low priority, and the nature of their impairments, results in a disproportionately negative impact of conflict on people with intellectual disabilities. Drawing on a wide range of sources, including humanitarian workers, this article examines their experiences and analyses how much consideration has been given to people with intellectual disabilities in humanitarian assistance policy and practice in light of their increased need and vulnerability. Lack of awareness and recognition of their diverse experiences can result in their needs failing to be adequately met, which compounds their disproportionately negative experience of conflict. It is important to finally start paying attention in order to ensure their inclusion in humanitarian responses.     

Service Providers to the Homeless Mentally Ill: Their Thoughts,Perceptions, and Recommendations for the Homeless

A qualitative research study was conducted to obtain an understanding of the people who provide senvices to persons who are homeless and mentally ill. Selvice providers were asked about the kinds of selvices they provide, what they consider beneficial to this population, the kinds of selvices they would like to provide, and what is needed to allevwte the homeless problem. Selvices found in the study included, those that meet basic needs, psychiatric/medical selvices, social setvices, and activities. Service providers indicated the major selvice priority is housing and the necessity of: (a) a safe environment, (b) additional psychiatric/social selvices, (c) day programs, and (d) health care. It is recommended that selvice providers advocate for the necessary improvements in services including, collaborative workshops and training sessions to the public and to each other.     

The family caregiving context among adults with disabilities: A review of the research on developmental disabilities,serious mental illness,and traumatic brain injury

ABSTRACT

A majority of adults with serious disabilities are cared for in the home by family members. Guided by an ecological framework, this article presents the findings of a literature review of research on family caregiving and family support for adults with disabilities. This review included 33 research studies published between 2000 and 2015 focused on three disabilities: Developmental disabilities, serious mental illnesses, and traumatic brain injury. A synthesis of the findings underscores the critical role that family caregivers occupy in addressing the needs of their loved one with a disability; however, the needs of the caregiver are insufficiently met by existing service approaches. A better understanding of the unique needs and strengths of the family support context of caregivers and care recipients is needed, giving greater attention to ethnic, racial, and cultural considerations in future research.     

Beyond friendship: the nature and meaning of close personal relationships as perceived by people with learning disabilities

Many people with learning disabilities aspire to having friends and to forming close relationships. Often the latter are discouraged, but for those who enter into such a relationship little is known about the meaning and value it brings to their lives. The aim of this study was to gain an insight into the close relationships of eight couples with learning disabilities using a combination of dyadic and one-to-one interviews. Data collection and analysis was informed and guided by the core principles of grounded theory. Five significant types of benefits were identified from having close personal relationships, namely: comradeship, a sense of contentment, availability of mutual support, coping with the ups and downs of relationships, and a continuing commitment. Service providers could do more to facilitate the formation of close meaningful relationships, and strategies for doing this need to be identified and evaluated.     

The legitimization process of students with disabilities in Health and Human Service educational programs in Canada

Policy-makers have articulated the right to education for individuals with disabilities. Nevertheless, students with disabilities remain underrepresented in universities. Students in Health and Human Service (HHS) programs experience many unique challenges that disadvantage them, such as having to complete practicums. In-depth interviews were conducted with 12 students in HHS programs who identified as having a disability to explore the challenges that they experienced. We found that students had to legitimate their ability to perform the roles of student and future practitioner. This legitimization process involved three components: negotiation of the disability label, selective disclosure, and advocacy. Our findings demonstrate how subtle and insidious forms of marginalization and stigmatization work to create barriers for students with disabilities.     

Learning disabled students and access to accommodations: socioeconomic status,capital, and stigma

In the 1990s, Canadian universities began implementing policies to accommodate learning disabled students. While such policies appear to make post-secondary education more accessible, students must manage considerable complexity and absorb social and financial costs to receive accommodations. Through interviews with learning disabled students, this research explores the effects of socio-economic status (SES) on how, or whether, students access accommodations at a Nova Scotian university. Drawing on the work of Bourdieu and Goffman, this study suggests that SES affects students’ abilities to navigate the accommodation process successfully, and that accommodation policies, while important, may not ensure equal access to accommodations.     

Precariously placed: housing affordability,quality and satisfaction of Australians with disabilities

Access to adequate, safe, secure, accessible and affordable housing is a fundamental human right and one stipulated in the United Nations Conventions on the Rights of Persons with Disabilities. Australian adults with disabilities experience housing disadvantage including homelessness, poor-quality housing and housing unaffordability; however, we lack a comprehensive comparison of the housing circumstances of people with and without disabilities and differences by impairment type. We analysed data from a nationally representative sample of 11,394 working-aged Australians collected in 2011. We found that people with disabilities experienced disadvantage across all housing indicators, and people with intellectual and psychological disabilities fared worst. These findings suggest that there is a housing crisis for Australians with disabilities, which may intensify with the introduction of the National Disability Insurance Scheme. There is a need to develop long-term housing solutions that promote independence, are accessible and affordable, and that consider location and neighbourhood context.     

Pragmatism,institutionalism, and the construction of employment discrimination

This paper uses ideas from neoinstitutional theory, as well as insights from the philosophy of pragmatism, to explain the construction of employment discrimination to include a model based on race differences in employment statistics. While some suggest the Equal Employment Opportunity Commission in the middle 1960s was the site of an ideological takeover or capture, this paper instead highlights the practical difficulties resulting from the commission's classically liberal founding institutional rules. The raceconscious, statistical model was constructed unintentionally, the result of the pragmatic pursuit of the original goal of effective and expedient enforcement of nondiscrimination.An earlier version of this paper was presented at the annual meeting of the American Sociological Association in Pittsburgh, Pennsylvania, August 1992.     

Likes,dislikes, supports and barriers: the experience of students with disabilities in university in Ireland

There are more students with disabilities going to college than ever before. It is important that colleges understand the experiences of students with disabilities when in university. This research project was carried out by 12 students with intellectual disabilities who are enrolled in an Irish university, under the guidance of their lecturers. The project looked at four research questions: (1) what do we like about going to college; (2) what do we dislike about going to college; (3) what supports do students with disabilities experience to participation in college; and (4) what barriers do students with disabilities experience to participation in college? The results show many interesting findings about what students with disabilities experience in college and this information can be used to help colleges better support students with disabilities.     

Cooling the Mother Out: Revisiting and Revising Goffman's Account

This article revisits Erving Goffman's important yet neglected metaphor of “cooling the mark out.” Drawing on a study of mothers whose child has Down's syndrome, I explore the value of Goffman's work for capturing how mothers interpret their child's diagnosis as a loss and rectify this breach by constructing an acceptance of their new situation. The mothers' accounts highlight how Goffman's contentions can be enriched by acknowledging the gendered, temporal, and public character of a loss. This article, thus, can be read both as a celebration and critical revision of his theoretical contribution.     

Stigmatization of People With Pedophilia: A Blind Spot in Stigma Research

ABSTRACT. Stigmatization restricts people's opportunities in life and has severe consequences on mental health and psychological well-being. This article focuses on stigmatization research on pedophilia. Based on an extensive literature search, it reviews studies that have empirically determined lay theories, stereotypes, prejudices, and discrimination against people with pedophilia, as well as the effect of stigma on this group. The review reveals a scarcity of empirical studies on the subject (11). Although the majority of studies give at least an indication that stigma against people with pedophilia is highly prevalent, we also identified severe methodological limitations and a lack of a unifying and systematic research agenda. We discuss the need for more theory-driven, rigorous, and representative empirical studies and propose perspectives and requirements for the scientific study of stigma against people with pedophilia.