Reading assignments – Disability and society (Master’s level course)

Below is the list of texts which will be discussed in each session (as of week 4) with links to the online versions. I include a short description of each paper, indicating the national context, the type of disability (if relevant), and the topic at hand. Most texts describe the results of a specific empirical research. When the format is more strictly theoretical or a literature review, I indicate it below. When needed, advice for the group working on the text is added. I also indicate if the text is to be presented or summarized online.

Section 4: From disability to disabilities

The general aim of the section is to sensitize students to the diversity of experiences gathered under the term “disability”. We will particularly stress two main sources of diversity and inequality within the experience of disability: the type and extent of impairment, and the inscription of disability within other system of inequality, notably based on race, class and gender. We will show how these contribute in shaping the very definition of disability. Hence this session will also be an occasion to raise in various ways the question of how the disability category is used by social actors and shaped by social forces (see notably the texts by Lane, Dilts and Pryma)

Presentation 4.1: Is deafness a disability? [Lane, 1995]

Lane, Harlan. 1995. “Constructions of Deafness.” Disability & Society 10(2): 171–90.

(Deafness, US). Harlan Lane is a linguist; he is a famous promoter of deaf culture. The text analyzes the social construction of deafness as a public problem, showing an opposition between a vision of deafness as a disability and its apprehension as a linguistic minority (a vision strongly promoted by the author).

Presentation 4.2: Race, gender and disability [Pryma, 2017]

Pryma, Jane. 2017. “‘Even My Sister Says I’m Acting like a Crazy to Get a Check’: Race, Gender, and Moral Boundary-Work in Women’s Claims of Disabling Chronic Pain.” Social Science & Medicine (181): 66–73.

(Fibromyalgia [invisible disability, chronic pain], US) Jane Pryma analyzes the “moral boundary-work” women with fibromyalgia need to perform in order to establish the reality of their pain and the legitimacy of their belonging to the category of the disabled. She shows that while women in general (who are 98% of fibromyalgia sufferers) face issues of credibility regarding the reality of their pain, Black women face more obstacles than white women.  [note to group: in the presentation, you don’t need to dwell on the theoretical framework regarding boundary-work; focus on the conclusions of the paper].

Online summary 4.1: Living with Down’s Syndrome [Alderson, 2001]

Alderson, Priscilla. 2001. “Down’s Syndrome: Cost, Quality and Value of Life.” Social Science & Medicine 53(5): 627–38.

[Down’s syndrome, intellectual disabilities, UK] Showing that the existing (mainly medical) literature on Down’s syndrome portrays it in very negative terms (a representation which notably translates into the practice of prenatal screening), Patricia Alderson basically asks the question: are lives with Down’s syndrome worth living? To answer this question, she has conducted interviews with people with Down’s syndrome. The text is a good illustration of the social model of disability.

Online summary 4.2: Chronic illness [Wendell, 2001]

Wendell, Susan. 2001. “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities.” Hypatia 16(4): 17–33.

(chronic illness) In this theoretical paper, Susan Wendell discusses how chronic illness, a major source of disability, challenges some of the fundamental initial orientations of disability movements, such as the need to distinguish disability from illness (critique of the medical model). She analyzes various aspects of the experience of people with chronic illnesses and how it differs from that of people who are “healthy disabled”, for example in political activism or in the workplace.

Online summary 4.3: Race, disability and disenfranchisement in the US [Dilts, 2012]

Dilts, Andrew. 2012. “Incurable Blackness: Criminal Disenfranchisement, Mental Disability, and the White Citizen.” Disability Studies Quarterly 32(3): [online].

(mental illness, US) The point of departure of this paper is the role of disenfranchisement as a major contemporary form of racial domination in the US. Based on a historical case study (the 1864 debate on voting requirements in Maryland), the author shows the connections between racial politics, criminal offense and mental health diagnosis as bases for disenfranchisement. NB: the theoretical section of the paper includes a very clear presentation of the critical disability studies’ critique of the impairment/disability distinction, which will be discussed in section 2 of the course.

Section 5: Disability policies at the crossroads

In this section, we will discuss theoretical models of disability policy, and develop the case of France as an empirical example. We will notably stress the centrality of the relation to work (and its complexity) in administrative definitions of disability. The 2 presentations shed light on examples of how definitions of disability are implemented in policymaking in France and in the US.

Presentation 5.1: Being recognized as a “disabled worker” in France [Bertrand & al., 2014]

Bertrand, Louis, Vincent Caradec, and Jean-Sébastien Eideliman. 2014. “Situating Disability. The Recognition of ‘disabled Workers’ in France.” ALTER – European Journal of Disability Research 8(4): 269–281.

(France) The recognition as a “disabled worker” is an administrative status that individuals need to be granted in order to be eligible to employment as part of the 6% French employment quota scheme. The authors focus on how this recognition actually takes place, analyzing the perspectives of both applicants and street-level bureaucrats and the different definitions of disability they mobilize.

Presentation 5.2: Disability and welfare reform in the US [Hansen & al., 2014]

Hansen, Helena, Philippe Bourgois, and Ernest Drucker. 2014. “Pathologizing Poverty: New Forms of Diagnosis, Disability, and Structural Stigma under Welfare Reform.” Social Science & Medicine 103: 76–83.

(mental illness, US) In the US, welfare reforms have strictly limited access to benefits for the poor. As a result, the main solution left for poor people to receive long-term public support is to turn to disability benefits, which they often do by means of mental illness diagnoses. Drawing on ethnographic fieldwork, the authors develop four cases in order to illustrate this idea of a “pathologization of poverty”. [Note to group: since this paper is very dense, in the presentation you can choose to present one of the four cases]

Section 6: Global disability rights

This section will focus on the UN Convention on the Rights of Persons with Disabilities (CRPD) and disability rights at the level of the European Union (EU). The goal of the presentations is to provide illustrations of disability rights and their monitoring, with examples that won’t be dealt with in the other sessions (such as education, employment, etc), notably political participation and the protection against violence

Presentation 6.1: Political participation [Priestley & al., 2016]

Priestley, Mark et al. 2016. “The Political Participation of Disabled People in Europe: Rights, Accessibility and Activism.” Electoral Studies 42: 1–9.

(European Union, all disabilities) The text provides an illustration of methods of human rights monitoring following the UN Convention on the Rights of Persons with Disabilities (CRPD) – here in the case of political rights and participation.

Presentation 6.2: Violence against disabled women [Shah & al., 2016]

Shah, Sonali, Lito Tsitsou, and Sarah Woodin. 2016. “Hidden Voices: Disabled Women’s Experiences of Violence and Support over the Lifecourse.” Violence against women.

(UK, but part of comparative European study; mainly physical disabilities) The fight against gender-based violence is a key element of the global human rights agenda. However, dominant research on gender-based violence generally fails to account for the experience of disabled women, who in fact are at greater risk of violence. The authors show that disabled women are subject to specific violence, and encounter issues in access to support services. They present some results from life history interviews with 15 disabled women in the UK who identified as survivors of violence.

Online summary 6.1: The diffusion of the rights model in the EU and Canada [Kelemen & Vanhala, 2010]

Kelemen, R Daniel, and Lisa Vanhala. 2010. “The Shift to the Rights Model of Disability in the EU and Canada.” Regional and Federal Studies 20(1): 1–18.

(Canada, European Union) The paper draws on the distinction between welfare and civil rights models of disability policy. Its aim is to explain the rapid shift from one to the other in the EU and Canada over the past 25 years. The authors argue that the speed of this shift can be explained by an « elective affinity between federal-level policy making and the rights-based model of disability ».

Online summary 6.2: Implementing universal design [Jones, 2014; Udo & Fels, 2010]

Jones, Paul. 2014. “Situating Universal Design Architecture: Designing with Whom?Disability and Rehabilitation 36(16): 1369–74.

Udo, J.P., and D.I. Fels. 2010. “Enhancing the Entertainment Experience of Blind and Low‐vision Theatregoers through Touch Tours.” Disability & Society 25(2): 231–40.

(US, Canada, visual impairments and other disabilities) Jones’s text is a theoretical reflection on the definition and implementation of universal design (UD) in architecture. [Note to group: since the text is a bit dense, here are a few guidelines on what you want to focus on: 1) the elements the author gives on the definition and origins of UD, 2) the critique he levels against the way the term has become commonly used in architecture, 3) his promotion of a participative framework]. Udo and Fel’s text provide an illustration of the implementation of UD in a different context (theatre-going, with an example of a production of Hamlet in Toronto which included a “touch-tour” prior to the play in order to make it more enjoyable by blind and visually impaired people, as a complement to audio-description). [Note to group: this text can be summed up separately from Jones’s]

Section 7: Education

Presentation 7.1: Special vs mainstream education [Shah, 2007]

Shah, Sonali. 2007. “Special or Mainstream? The Views of Disabled Students.” Research Papers in Education 22(4): 425–42.

(UK, physical impairments) In this paper, Sonali Shah reports on a study she conducted with 30 UK students with physical impairments, on their experience of different forms of schooling. While authors and activists promoting the social model strongly argue in favor of schooling disabled children in mainstream schools, the study shows that the views of students themselves on this issue are mixed, notably due to a lack of support in mainstream schools, or to the way this support is provided.

Presentation 7.2: Disability and higher education (1) – The university experiences of students with learning disabilities [Waterfield & Whelan, 2017]

Waterfield, Bea, and Emma Whelan. 2017. “Learning Disabled Students and Access to Accommodations: Socioeconomic Status, Capital, and Stigma.” Disability & Society 32(7): 986–1006.

(Canada, learning disabilities) While addressing the question of disability in higher education, the paper also relates to section 4 on disabilities, by shedding light on a less visible disability (learning disabilities) and on the impact of social class (socioeconomic status) on the experience of disability. The authors show how socioeconomic status affects students’ access to accommodations, and the perceptions students have of this influence.

Online summary 7.2: Disability and higher education (2) – The university experiences of students with Asperger Syndrome [Casement, 2017]

Casement, Sue, Carmen Carpio de los Pinos, and Rachel Forrester-Jones. 2017. “Experiences of University Life for Students with Asperger’s Syndrome: A Comparative Study between Spain and England.” International Journal of Inclusive Education 21(1): 73–89.

(Spain, UK, Autism) Based on an exploratory study in Spain and England, the paper sheds light on several aspects of the university experience of students with Asperger Syndrome, in terms of social relationships, the “special interests” that structure their academic life, the environment and the support mechanisms they rely on.

Section 8: Employment

Presentation 8.1: To work or not to work? [Ville & Winance, 2006]

Ville, Isabelle, and Myriam Winance. 2006. “To Work or Not to Work? The Occupational Trajectories of Wheelchair Users.” Disability and Rehabilitation 28(7): 423–36.

(France, mobility impairments) In this research, Isabelle Ville and Myriam Winance analyze the occupational trajectories of 36 wheelchair users (most of whom became disabled during their lives following accident or illness). In a French context which makes it financially possible for wheelchair users “not to work”, the authors show how they appropriate employment or other forms of social activities.

Presentation 8.2: Glass partitions [Roulstone & Williams, 2014]

Roulstone, Alan, and Jannine Williams. 2014. “Being Disabled, Being a Manager: ‘glass Partitions’ and Conditional Identities in the Contemporary Workplace.” Disability & Society 29(1): 16–29.

(UK, various impairments) While studies of disability on the labor market often focus on low-level jobs, this research focuses on those disabled people who make it to managerial positions. The authors study the work experiences and perspectives of disabled managers in the UK. Drawing on analyses in terms of glass ceiling developed in gender studies, they offer an analysis in terms of glass partitions, which refer to disabled managers’ reluctance to change jobs for fear of having to « come out » again and/or losing the accommodations they have negotiated in their current job.

Online summary 8.1: A case of disabling employment [Holmqvist, 2009]

Holmqvist, Mikael. 2009. “Disabled People and Dirty Work.” Disability & Society 24(7): 869–82.

(Sweden) Mikael Holmqvist argues that work plays a role in the construction of disability, based on a detailed case study of the main Swedish sheltered employment organization, Samhall (a subcontractor). This organization hires people deemed “occupationally disabled”, including people without any impairment but who have been unemployed for a long time, and often people from immigrant background. He shows how performing “dirty work” in this organization creates “a sense of disablement” among individual with no diagnosis of impairment prior to working for Samhall.

Online summary 8.2: The disclosure of mental health issues at work [Irvine, 2011]

Irvine, Annie. 2011. “Something to Declare? The Disclosure of Common Mental Health Problems at Work.” Disability & Society 26(2): 179–92.

(UK, mental illness) In this paper, Annie Irvine draws on two qualitative studies to analyze if and how people with mental health issues disclose them at the workplace. While most studies of workplace disclosure focus on ‘severe and enduring’ mental health conditions, the author includes people experiencing more common mental health problems, some of which induced by work-related stress. By doing this, she situates herself in the perspective of a mental health “continuum”, while showing how people navigate their experience on this continuum in workplace settings.

Section 9: Care

Presentation 9.1: Personal assistance [Gibson et al., 2009]

Gibson, Barbara E., Dina Brooks, Dale DeMatteo, and Audrey King. 2009. “Consumer‐directed Personal Assistance and ‘care’: Perspectives of Workers and Ventilator Users.” Disability & Society 24(3): 317–30.

(Canada, mobility impairment) Consumer‐directed personal assistance stems from the philosophy of Independent Living, which values disabled people’s control over the assistance provided to them within a de-institutionalized context (individuals living independently in their homes rather than in an institution). In this perspective, personal assistants are expected to act as the person’s « arms and legs ». The authors explore how this philosophy actually enfolds within the personal assistant – disabled person relationship (here in the case of ventilator users, who often require 24-hour support.

[Note to group: the debate on care within disability studies will have been presented in the lecture]

Presentation 9.2: The experiences of disabled mothers [Malacrida, 2007]

Malacrida, Claudia. 2007. “Negotiating the Dependency/Nurturance Tightrope: Dilemmas of Motherhood and Disability.” Canadian Review of Sociology 44(4): 469–93.

(Canada, various impairments) In a context where disabled people are perceived as cared for rather than possible providers of care, the experiences of disabled mother are both not very socially visible, and marked by important social control and concrete obstacles. Claudia Malacrida documents this experience based on biographical interviews with disabled mothers in Canada.

Online summary 9.1: Parents caring for young disabled children [McLaughlin, 2006]

McLaughlin, Janice. 2006. “Conceptualising Intensive Caring Activities: The Changing Lives of Families with Young Disabled Children.” Sociological Research Online 11(1).

While social model-inspired research has tended to insist on the need to focus on disabled people themselves rather than their parents, and has been reluctant to address the issue of care, this paper draws on the social model to analyze the care practices and representations of parents of young disabled children. Janice McLaughlin’s perspective departs from the common perception of care as burden, to analyze how the presence of a disabled child changes the family’s practices and identity. The author notably stresses how parents « assert the self-worth and value of their children » facing negative medical and cultural discourse about disability.

Section 10: Cultural representations

Presentation 10.1: Media representations [Burns and Haller, 2015]

Burns, Shawn, and Beth Haller. 2015. “The Politics of Representing Disability. Exploring News Coverage of the Americans with Disabilities Act and the National Disability Insurance Scheme.” Asia Pacific Media Educator 25(2): 262–77.

(US, Australia, all disabilities) The authors analyze the media coverage of two major disability reforms, the Americans with Disabilities Act (ADA) in the US and the National Disability Insurance Scheme (NDIS) in Australia. The article provides an illustration of the typologies of cultural representations of disability. It also offers a reflection on the role of the media in the transformation of prevailing representations.

Presentation 10.2: Narratives of disability and identity [Scully, 2008]

Scully, Jackie Leach. 2008. « Narratives of disability: models and mentors », p.107-131 in Disability Bioethics: Moral Bodies, Moral Difference. Lanham, Md.: Rowman & Littlefield.

(UK, deafness and other disabilities) Jackie Scully, who is herself deaf and active in the disability movement in the UK, reflects on the role of disability narratives both for nondisabled audiences and in the identity construction of disabled people. [Note to group: for the presentation, no need to develop too much the conceptual framework around narrative identity. Instead of trying to sum up all the details of Scully’s argument, you can choose to develop an example of one of the disability memoirs she comments on]

Online summary 10.1: Representations of disability in prenatal screening [Ville and Mirlesse 2015]

Ville, Isabelle, and Véronique Mirlesse. 2015. “Prenatal Diagnosis: From Policy to Practice. Two Distinct Ways of Managing Prognostic Uncertainty and Anticipating Disability in Brazil and in France.” Social science & medicine 141(1): 19–26.

(France-Brazil comparison) The authors compare the way prenatal diagnosis is performed in France and Brazil, notably showing how regulations in terms of abortion shape the way doctors talk to patients about fetal pathologies.

Online summary 10.2: Representations of disability in international development NGOs [Wehbi et al 2010]

Wehbi, Samantha, Lindsay Elin, and Yahya El-Lahib. 2010. “Neo-Colonial Discourse and Disability: The Case of Canadian International Development NGOs.” Community Development Journal 45(4): 404–22.

(Canada, Lebanon) The authors analyze the way disability is (not) taken into account in the public reports of Canadian international development NGOs, a result which the authors contrast to their own experience of the role of disability and disabled people in community organizing and development projects in Lebanon.

Section 11: Undoing stigma

Presentation 11.2: Disability arts and culture [Hodges & al., 2014; Ineland, 2005]

Hodges, Caroline E.M., Lee-Ann Fenge, and Wendy Cutts. 2014. “Challenging Perceptions of Disability through Performance Poetry Methods: The ‘Seen but Seldom Heard’ Project.” Disability & Society 29(7): 1090–1103.

Ineland, Jens. 2005. “Logics and Discourses in Disability Arts in Sweden: A Neo‐institutional Perspective.” Disability & Society 20(7): 749–62.

(UK, physical disabilities; Sweden, intellectual disabilities) The texts shed light on two examples of disability arts and culture, poetry and theatre. Hodges and al.’s research illustrates how disability art (in this case, poetry) can be integrated in an original form of empirical investigation, poetic inquiry. Ineland’s research deals with the experience of a theatre for and with people with intellectual disabilities. The author describes the theatre’s difficulties in positioning itself as a disability art endeavor, when its action is also frequently analyzed in terms of therapy. [Note to group: the 2 texts can be presented separately ; for Ineland’s paper, no need to dwell on the institutional theory framework; focus on the empirical results]

Presentation 11.2: Fighting prejudice: are disability simulations effective? [Silverman, 2015]

Silverman, Arielle Michal. 2015. “The Perils of Playing Blind: Problems with Blindness Simulation and a Better Way to Teach about Blindness.” Journal of Blindness Innovation and Research 5(2): [online].

(blindness, USA) Based on a review of existing literature and various experiences of disability simulations, Arielle Silverman offers a discussion of the advantages and drawbacks of disability simulations, as well as advice on how to make them effective.

Online summary 11.1: Experiences of stigma: the case of intellectual disabilities [Jahoda and Markova, 2004; Jahoda, 2010]

Jahoda, A., and I. Markova. 2004. “Coping with Social Stigma: People with Intellectual Disabilities Moving from Institutions and Family Home.” Journal of Intellectual Disability Research 48(8): 719–29.

Jahoda, Andrew, Alastair Wilson, Kirsten Stalker, and Anja Cairney. 2010. “Living with Stigma and the Self-Perceptions of People with Mild Intellectual Disabilities.” Journal of Social Issues 66(3): 521–34.

(UK, Intellectual disabilities) Based on in-depth qualitative methods (including original methods such as photographs and video diaries), these two studies investigate how people with intellectual disabilities experience stigma, and how it affects their perceptions of selves.

Section 12 : Conclusion

Presentation 12.1: Accessibility [Lid et al 2016]

Lid, Inger Marie, and Per Koren Solvang. 2016. “(Dis)ability and the Experience of Accessibility in the Urban Environment.” ALTER – European Journal of Disability Research / Revue Européenne de R wheelchair users, echerche sur le Handicap 10(2): 181–94.

(Norway, blindness and mobility impairments). The authors discuss the experience of the accessibility of the urban space based on a qualitative study with people with visual or mobility impairments in Norway. They stress the multidimensionality of person-environment interactions.