No Pity: People with Disabilities Forging a New Civil Rights Movement

Leighty, Cheryl A.; Shapiro, Joseph P.

doi:10.2307/1289622

Cited by 51 publications

(14 citation statements)

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“…PAR is linked to action, which ideally leads to communities having increased control over their lives [ 17 ]. This reflects and echoes the overarching principle of inclusion highlighted by the Disability Rights Movement: “nothing about us without us” [ 18 ]. Thus, PAR promotes a partnership model that is fundamental to participants holding equal power in research teams and enables local knowledge to be used to achieve relevant, appropriate, and high-quality end goals [ 17 ].…”

Section: Introductionmentioning

confidence: 82%

Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design

Rabba

Dissanayake

Barbaro

2020

JMIR Pediatr Parent

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Background The internet provides an ideal avenue to share information, advice, and support regarding autism. However, many websites lack quality control and rarely provide a one-stop resource for families to access necessary, evidence-based information. Objective This study aims to use participatory action research (PAR) with end users (ie, parents) and clinicians to develop a web-based resource (Pathways Beyond Diagnosis) to improve timely access to quality, evidence-based information, and support for families after their child is diagnosed with autism. Methods The PAR approach involves 4 phases: (1) cooperative researcher-stakeholder planning, (2) cooperative researcher-stakeholder–based action, (3) stakeholder observation, and (4) cooperative researcher-stakeholder reflection. A total of 15 participants (parents, n=3; clinicians, n=9; and researchers, n=3) attended individual or group participatory design workshops. This was followed by the translation of knowledge and ideas generated during the workshops to produce mockups of webpages and content, rapid prototyping, and one-on-one consultations with end users to assess the usability of the website developed. Results A total of 3 participatory design workshops were held with the participants, each followed by a knowledge translation session. At the end of the PAR cycle, an alpha prototype of the website was built and a series of one-on-one end user consultation sessions were conducted. The PAR cycle revealed the importance of 6 key topic areas (understanding autism, accessing services, support, gaining funding, putting it all together, and looking into the future) associated with the time of diagnosis, which were incorporated into the beta version of the website. Conclusions The development of the Pathways Beyond Diagnosis website using PAR ensures that families have ready access to practical and evidence-based information following a young child’s diagnosis. The website guides families to access relevant, reputable, and evidence-based information in addition to summarizing key challenges encountered after diagnosis (ie, grief, sharing the diagnosis) and the importance of self-care.

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Section: Introductionmentioning

confidence: 82%

Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design

Rabba

Dissanayake

Barbaro

2020

JMIR Pediatr Parent

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“…Many times, disability law and disability studies are relegated to those with a personal relationship to disability (Kafer : 2). Like members of the “hidden army” who helped pass the ADA in Congress (Shapiro : 117), those who are interested in and know disability law often have some personal connection to people with disabilities. However, disability is a category people might enter and leave throughout their lives.…”

Section: Section Vi: Inducing Trust and Reducing The Stereotypementioning

confidence: 99%

“…The ADA's 1990 passage was borne of a bipartisan political effort by then‐President George H. W. Bush and a Democratically controlled House and Senate. Scholars also attribute political support to the personal life experiences and connections members of Congress had with disability (Davis : 3), articulated by Shapiro as constructing a “hidden army” of proponents (Shapiro : 117–19).…”

Section: Section I: Disability Rights and Perceptions Of Fakerymentioning

confidence: 99%

Fear of the Disability Con: Perceptions of Fraud and Special Rights Discourse

Dorfman¹

2019

Law Soc Rev

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This article presents a new framework for analyzing the development and implementation of disability law: the prism of the fear of “the disability con”—popular perceptions of fraud and fakery. We all encounter disability rights and accommodations in everyday life. However, people with disabilities pay a price for the legal recognition of their rights. People who park in disabled parking spots, use service dogs, move to the front of lines, receive Social Security benefits, or request academic accommodations are often viewed as faking disabilities and abusing the law. This disability con stereotype thus serves as an important invisible barrier preventing Americans with disabilities from fully taking part in society, as it not only undermines the public legitimacy of rights but also restricts the design and implementation of the legal regime illustrating those. Nevertheless, this moral panic around disability con in American society and its manifestations has yet to be studied in a systematic‐empirical way, nor has it been addressed in sociolegal scholarship. Using a mixed‐methods approach composed of an original nationally representative survey along with in‐depth interviews, this article fills this gap. The data suggest that the stereotype of disability con applies to multiple disability rights across venues and contexts; that nearly 60% of Americans with disabilities feel that others question their disability; that the stereotype of disability con extends to visible disabilities and to less apparent ones; and that, counterintuitively, the people most suspicious are nondisabled individuals with a personal connection to a disabled person and disabled people who experience suspicion themselves. Based on the richer understanding of the sociolegal phenomenon, this article suggests strategies to increase trust and reduce suspicion of the disability con.

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“…Legal and policy changes are said to reveal a “legal paradigm shift from welfare or social security law toward antidiscrimination or equality law” (Vanhala : 840). They reflect a transformation of the understanding of disability itself, characterized by a shift from the so‐called medical model to the social model of disability, which has been actively promoted by disability activist movements (Driedger ; Heyer ; Shapiro ). Under this new approach, rather than an intrinsic characteristic of the person, which would make them objectively incapable of integrating into mainstream society, disability is seen as the result of the interaction between disabled persons and their physical, social, and institutional environment, which is not adapted to their needs (Barnes and Mercer ; Oliver ).…”

Section: Beyond the “Shift Of Paradigm” Thesis: How Coexistence Of Ol...mentioning

confidence: 99%

Workers with Disabilities Between Legal Changes and Persisting Exclusion: How Contradictory Rights Shape Legal Mobilization

Lejeune¹,

Ringelheim²

2019

Law Soc Rev

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It has become commonplace within disability sociolegal scholarship to argue that, in the last 30 years, a new legal and policy approach to disability has emerged, leading to a paradigm shift from a social protection framework to an antidiscrimination model. Some authors have stressed, however, that the new model has not fully replaced the older social protection approach. Yet little is still known about how the coexistence of these different models impacts on the everyday experience of disability in the workplace and on potential legal mobilization. Based on interviews with workers with disabilities who mobilized the law to obtain reasonable accommodation in Belgium combined with an analysis of evolving Belgian legal schemes relating to disability, this article explores how interactions between social, labor, and antidiscrimination rights shape legal mobilization of persons with disabilities in the workplace. We find that individual's initial self‐identification as workers or persons with disabilities influences how they frame their claim and the kind of legal norms they refer to in a first stage but that both their identification and their rights consciousness evolve and change through the course of legal mobilization as they interact with various professionals and navigate between the different concepts and rights available in current law.

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No Pity: People with Disabilities Forging a New Civil Rights Movement

Cited by 51 publications

References 0 publications

Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design

Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design

Fear of the Disability Con: Perceptions of Fraud and Special Rights Discourse

Workers with Disabilities Between Legal Changes and Persisting Exclusion: How Contradictory Rights Shape Legal Mobilization

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