Disability Civil Research Articles

New Rules Requiring Accessible Medical Diagnostic Equipment—Updates to Section 504 Disability Civil Rights Regulations

This Viewpoint reviews the history of mandates governing access to medical diagnostic equipment in Section 504 of the Rehabilitation Act of 1973 and reviews the new rules.

What some physicians say about caring for patients with disability: Responses to open-ended question to nationwide physician survey

BackgroundFor over 50 years, federal disability civil rights laws have mandated that patients with disability receive equitable health care. However, disabled patients continue to experience health care disparities. ObjectiveTo explore physicians’ views, in their own words, about caring for patients with disability. MethodsReview of responses to open-ended question at the end of a nationally representative survey of 714 outpatient physicians about their experiences caring for adult disabled patients. The open-ended question asked for additional comments participants wanted to share. Only 108 (15.1 %) survey participants provided responses suitable for analysis (e.g., legible, complete thought). All issues reported here reflect comments from ≥5 participants. ResultsCommon concerns involved high costs, too little time, insufficient space, inadequate training, and lack of adequate mental health services to care for disabled patients. Many physicians appeared frustrated by legal requirements that they cover accommodation costs. Multiple physicians described as “unfair” having to pay for sign language interpreters, especially since interpreter costs generally exceed reimbursements for patients’ visits. Physicians also commented on high costs and space demands of accessible exam tables, especially for small practices, and on challenges accommodating patients with severe obesity, including concerns that patients with severe obesity could damage their exam tables. Some participants suggested that disabled patients require advocates to get good quality care. ConclusionsAlbeit limited by the small number of responses, these open-ended comments from our nationwide survey of physicians suggest some doctors view certain accessibility requirements as unfair to them or infeasible in their practice environments.

Challenges for the Pro-Life Movement in a Post-Roe Era.

This article argues that state laws banning abortions for disability violate reproductive justice for parents with disabilities. These bans deprive people with disabilities of choices that may be important to their possibilities of becoming parents, including possibilities for abortion of pregnancies that have become risky to continue. Far from protecting disability civil rights, these state law bans restrict the abilities of people with disabilities to choose to have children and to parent.

The Reproductive Injustices of Abortion Bans for Disability.

This article argues that state laws banning abortions for disability violate reproductive justice for parents with disabilities. These bans deprive people with disabilities of choices that may be important to their possibilities of becoming parents, including possibilities for abortion of pregnancies that have become risky to continue. Far from protecting disability civil rights, these state law bans restrict the abilities of people with disabilities to choose to have children and to parent.

Have Almost Fifty Years Of Disability Civil Rights Laws Achieved Equitable Care?

For almost fifty years, federal civil rights laws such as Section 504 of the Rehabilitation Act of 1973, the Americans with Disabilities Act (ADA) of 1990 and the ADA Amendments Act of 2008, and Section 1557 and other provisions of the 2010 Patient Protection and Affordable Care Act have prohibited discrimination against Americans with disabilities, including in health care. Despite these laws, disabled Americans continue to experience disparities in health and health care, from preventive care to home and community-based services. In its 2022 Health Equity Framework for People with Disabilities, the National Council on Disability highlighted some of these disparities and recommended remedies. To explore these concerns, this article examines disability inequities and potential solutions within six areas. It concludes by recommending the ratification of the 2006 United Nations Convention on the Rights of Persons with Disabilities to reinvigorate US efforts to maximize the health and dignity of disabled Americans and support their full participation in the community.

Issues of Confidentiality and Potential Disability Discrimination in Behavior Intervention Team Responses to College Student Suicidality

In response to concerns about liability and safety, many colleges and universities have instituted Behavior Intervention Teams (BITs) to help assess and intervene with students who may pose a risk of harm to self or others. Students, lawyers, and advocates have raised concerns about some aspects of the implementation of BITs and related institutional policies, particularly with regard to students who are suicidal and those who engage in self-injurious behavior. Specifically, BITs are on complicated legal ground regarding confidentiality, disability civil rights law, and potential discriminatory or disparate treatment of students with psychiatric disabilities. In addition to reviewing the nature and background of BITs, this article reviews the professional, ethical, and legal issues surrounding confidentiality in the context of university intervention with students who are at risk for harm to self and the potentially applicable of disability civil rights law to BIT intervention with students who are suicidal. Suggestions for alternative and supplemental interventions, especially widespread use of suicide gatekeeping, are provided. Finally, the need for advocates who are knowledgeable in disability civil rights law is highlighted.

Introduction: Disability in the Eighteenth Century

Introduction:Disability in the Eighteenth Century Travis Chi Wing Lau (bio) and Madeline Sutherland-Meier (bio) Disability studies emerged out of the rights-based activism of the 1970s and 1980s to become an interdisciplinary field invested in challenging stigmatizing notions of disability as individual impairment, pitiful tragedy, or human lack. Critical both to the disability civil rights movement and to the academic field is the social model of disability, which understands environments, institutions, cultures, and attitudes to be disabling, rather than locating those disabilities within individuals, who are then subject to curative intervention or even elimination. For disability scholars, the medical model's reduction of disability to pathology is symptomatic of a more pervasive cultural preference for able-bodiedness—what Tobin Siebers has called "the ideology of ability."1 Foundational scholarship in disability studies, such as Lennard Davis's Enforcing Normalcy: Disability, Deafness, and the Body and Rosemarie Garland-Thomson's Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature, have worked to historicize the ways in which able-bodiedness has been normalized through not only state policies and statistical thinking, but also literary and artistic production.2 Since the late 1990s, literary and cultural disability studies have responded to the legacy of representations that depict disabled people as infirm, infantile, or inhuman. David Mitchell and Sharon Snyder critique this deployment of [End Page 297] disability as a crutch used to shore up narratives of progress or recovery.3 Disability, invoked only for its transgressive or symbolic potential through typically flat, minor characters, is then promptly cast away through curative resolution. The ubiquity and stereotypicality of these narratives, Mitchell and Snyder suggest, enable the normativizing of able-bodiedness. Disability thereby becomes "the master trope of human disqualification."4 The "tyranny of the norm" and disability as "the master trope of human disqualification" have become ur-narratives in disability scholarship. Yet, attention to historical periods prior to the development of what Rosemarie Garland-Thomson has called the "normate"—a composite identity unmarked by bodily difference and defined by and against other bodies coded as "deviant" or "defective"—radically unsettles an otherwise deterministic model of disability as ever-moving toward oppression and pathology.5 As scholars like Helen Deutsch, Felicity Nussbaum, Chris Mounsey, and David Turner have demonstrated, disability as a concept was in flux and was frequently "subsumed under other categories, notably deformity and monstrosity" in the eighteenth century.6 Before the rise of the hard sciences and the professionalization of medicine, the eighteenth century witnessed intense debates over the definition of the human, a category which radically shifted how bodies were understood and ultimately valued. Embodied concepts of deformity and debility attached to race, gender, class, and sexuality preceded the eugenic thinking of the nineteenth century that reified the binary of normal and abnormal. Yet, during this transformative period, disabled people also survived, resisted, and even flourished. Scholarship in eighteenth-century studies, as exemplified by the essays in this cluster, has not only powerfully contributed to more historically nuanced interpretations of disability, but also to a larger shift toward more intersectional disability studies informed by other minority fields like queer studies and critical race studies. The Disability Studies Caucus is a relatively young caucus of the American Society for Eighteenth-Century Studies compared to the Race and Empire Caucus and the Women's Caucus. Its beginnings can be traced back to 2004, when Lennard Davis and D. Christopher Gabbard organized a panel titled "Defect, Deformity, and Disfigurement in the Long Eighteenth Century." There would not be another panel on the topic of disability until 2011, when Chris Mounsey organized two panels under the title "Looking at Disability in the Eighteenth Century." These would be followed by collaborations with Stan Booth, George Haggerty, Paul Kelleher, Jared Richman, and Jason Farr that resulted in panels and roundtables like the "History of Disability (Studies)," "Eighteenth-Century Disability Studies: Past, Present, and Future," "Disability, War, and Violence," and "Disability [End Page 298] in the Long Eighteenth Century." By 2014, the Disability Studies Caucus had become formally recognized by ASECS and has since held sessions on topics like crip theory, disability and aging, and crip approaches to eighteenth-century narratives. The essays composing this...

Knowledge Of Practicing Physicians About Their Legal Obligations When Caring For Patients With Disability.

Disability civil rights laws require equitable treatment of the approximately sixty-one million Americans with disability. However, federal reports and numerous research studies indicate that this diverse and growing population often experiences health care disparities. To examine one possible contributing factor, we interviewed practicing physicians to explore their knowledge of their obligations to accommodate patients with disability under federal civil rights law. Interviewees reported having had little formal training about, and demonstrated superficial or incorrect understanding of, their obligations in three potentially problematic areas: deciding which accommodations their practices should implement, refusing patients with disability, and holding patients accountable for costs of accommodations. The fact that practicing physicians might not fully understand their legal responsibilities when caring for people with disability may contribute to persisting inequity in their care, and it suggests that further education in the Americans with Disabilities Act and other disability civil rights laws may be warranted.

Understanding disability civil rights non-categorically: The Minority Body and the Americans with disabilities act

A persistent paradox apparently infects disability civil rights claims. On the one hand, these rights claims are often understood to apply only to those who are sufficiently impaired in body or in mind to qualify for them because of the disadvantage they endure. On the other hand, asserting significant impairments threatens to undermine the plausibility of these claims as civil rights rather than as welfare for those who are dependent and in need of extra help. Behind this paradox lies a type of categorical understanding of disability civil rights: that disability civil rights are only for those who fall into a category of disability and that this category should be defined in a particular way, in terms of disadvantaging disablement. In this article, I dispel this paradox by deploying a critical analysis of Elizabeth Barnes’s account of physical disability in her recent book, The Minority Body (2016). In her book, Barnes makes the important critical point that disability is not “bad” difference. Instead, she argues that physical disability is a physical condition that the disability rights community is working to promote justice for. I argue that this account fails as a project of ameliorative social metaphysics because it fails to understand the role of impairment in the construction of disability antidiscrimination law. I also argue that her account risks privileging physical disability and is thus problematic as a starting place for examining disability justice.

Understanding Disability Civil Rights Non-Categorically: The Minority Body and the Americans with Disabilities Act

Barnes's The Minority Body is a welcome corrective to accounts of disability that judge it to be bad for people with disabilities and that rest claims to social justice on this assumption. It is less successful as a project in ameliorative social metaphysics that defines disability in terms of what a rights movement seeks justice for. We need instead to begin with an account of the discrimination that a rights movement ought to seek to remedy. This is an urgent project, as proponents of disability rights know all too well.

Views of teenage children about the effects of a Parent's mobility disability

BackgroundFew U.S. studies have explored how children experience a parent's mobility disability and its effects on their daily lives. ObjectiveWe aimed to engage youth ages 13–17 who had at least one parent with mobility disability in describing their perceptions of their parent's disability and its consequences for their daily and family life. MethodsParticipants videoed and photographed their experiences following general guidelines from the researchers about topics of interest. Participants made their own choices about what they submitted. We used conventional content analysis to identify broad themes. ResultsThe mean (standard deviation) age of the 10 participants was 15.2 (1.9) years; 5 were male; 9 participants were white. All 5 girls submitted multiple self-focused (selfie) videos made in their bedrooms; the 5 boys submitted more diverse data files. Several broad themes or topics emerged including: the effects of timing and trajectory of the parent's disability; perceptions of early maturity and responsibility; fears and frustrations relating to the parent's disability; support and emerging resilience; and sense of social justice. Participants generally felt their parents' disability made them become – compared to their peers – more mature, responsible, capable of performing household tasks, and aware of disability civil rights. ConclusionsParticipants raised many issues that health care providers should be aware of when youth have parents with mobility disability. A parent's mobility disability may be associated with resilience but also may pose challenges for youth. More research is needed to understand better adolescents' experiences and how clinicians might best assist these youth.

Disability-policy models in European welfare regimes: comparing the distribution of social protection, labour-market integration and civil rights

This paper examines different models of disability policy in European welfare regimes on the basis of secondary data. OECD data measuring social protection and labour-market integration is complemented with an index which measures the outcomes of disability civil rights. Eurobarometer data is used to construct the index. The country modelling by cluster analysis indicates that an encompassing model of disability policy is mainly prevalent in Nordic countries. An activating and rehabilitating disability-policy model is predominant mainly in Central European countries, and there is evidence for a distinct Eastern European model characterized by relatively few guaranteed civil rights for disabled people. Furthermore, the Southern European model, which indicates a preference for social protection rather than activation and rehabilitation, includes countries which normally have diverse welfare traditions.

Trends in mammography over time for women with and without chronic disability.

Women with disabilities often receive mammograms at lower rates than do nondisabled women, although this disparity varies by disability type and severity. Given the implementation of disability civil rights laws in the early 1990s, we examined whether disability disparities in mammogram use have diminished over time. We analyzed National Health Interview Survey responses of civilian, noninstitutionalized United States female residents 50 to 74 years old from selected years between 1998 and 2010. We identified seven chronic disability types using self-reported functional impairments, activity/participation limitations, and expected duration. We conducted bivariable and multivariable logistic regression analyses examining associations of self-reported mammogram use within the previous two years with sociodemographic factors and disability. Most chronic disability rates rose over time. The most common disability was movement difficulties, with rates increasing from 35.6% (1998) to 39.8% (2010). Mammogram rates for all women remained relatively stable over time, ranging from 72% to 75%. Bivariable analyses generally found statistically significantly lower mammogram rates for women with disability versus nondisabled women. Over time, disparities grew significantly between women with any basic action difficulty or complex activity limitation and nondisabled women (p<0.01). In multivariable logistic analyses, having any difficulty with basic actions was significantly associated with lower adjusted odds of mammography; for example, adjusted odds [95% confidence interval]=0.5 [0.3-0.8], p=0.006, in the model involving movement disability. Little has changed since 1998 in mammogram rates for women with versus without disabilities. Women with certain disabilities continue to experience disparities in mammography testing.

ADA at 25 and People With Cognitive Disabilities: From Voice to Action

AbstractThe Americans With Disabilities Act (ADA) of 1990, and the ADA Amendments Act (ADAAA) of 2008, are effecting dramatic changes in the perception of cognitive and other disabilities, from primarily viewing disability as a medical state to be cured and pitied toward acceptance of disability as an element of human experience and self-identity. The ADA's modern understanding of disability is as much shaped by diversity in biology, local culture, and self-identity over the life course, as it is by the barriers to inclusion we build and maintain in society. This view reflects the paradigm shift from the prior and dominating medical model to a social and environmental approach to disability civil and human rights. This two-part special issue of the journal Inclusion examines the ADA at its 25th anniversary. The articles reflect on the past 25 years, examine the present, and anticipate the future to ensure continued progress towards the civil and human rights of individuals with cognitive and other disabilities.

Silence on the stomping grounds: a case study of public communication about disability in the 1990s

This case study describes the manner in which the University of North Carolina at Chapel Hill – the first state-funded institution of higher education in the United States – publicly addressed the disability civil rights movement just before and after the passage of the Americans with Disabilities Act in 1990. An analysis of archived documents, reports, and correspondence among administrators coupled with a review of news coverage in two of the most prominent news sources on campus indicated that there was no attempt to create and sustain significant public communication efforts about disability. Public communication focused on accessibility issues and rarely acknowledged the significance of the disability civil rights. The potential benefit of public communication about disability issues is discussed as it relates to higher education’s obligation to assume social leadership.

Beyond Disability Civil Rights

This Article argues that to be effective both domestic and international disability rights must adopt a disability human rights paradigm. Such a framework combines the type of civil and political rights provided by antidiscrimination legislation (also called negative or first-generation rights) with the full spectrum of social, cultural, and economic measures (also called positive or second-generation rights) bestowed by many human rights treaties. By acting holistically, this agenda accounts for factors normally exogenous to civil rights laws and ensures that individuals can flourish and participate in their societies. Accordingly, our intention is to share some thoughts on how to best provide disabled citizens with equal opportunity rather than “merely” equal treatment. Internationally, States and civil society organizations have been developing innovative and effective equality measures. We draw on their experiences in providing examples of how disability legislation ! and policy can be developed to implement a more holistic human rights approach. These lessons are also pertinent for invigorating the ADA.The Article proceeds as follows: Parts I and II briefly overview the origins, moral salience, and limitations of the social model’s disability civil rights agenda. Next, Part III advocates for a more integrated, human rights-based approach to disabled empowerment based on a disability human rights paradigm as exemplified by the forthcoming UN Disability Rights Convention. Finally, Part IV briefly illustrates how international practices, in line with a disability human rights based framework can facilitate the development of more effective disability legislation and policy.

Disability Civil Rights and a New Paradigm for the Twenty-First Century: The Expansion of Civil Rights Beyond Race, Gender and Age

The modern workplace is becoming diverse in ways that are no longer captured by exclusive categories of race, gender, and age. Class and economic differences, sexual orientation, multiple careers, and individuals with disabilities are all a part of a workforce that is changing the American employment landscape in non-traditional ways. For many people in the workforce, being treated equally does not always achieve a workplace free of discrimination, nor accomplish the broad goals of civil rights. The lack of homogeneity among people with disabilities requires an individual and contextual analysis under the Americans with Disabilities Act (ADA), as well as a flexible, interactive process between the employer and the employee to provide a reasonable accommodation. Miller argues that this disability rights paradigm - one that necessitates an individualized, case-by-case analysis of discrimination - better reflects the diversity and needs of the complex, modern workforce.

Intersectional Needs Politics: A Policy Frame for the Wicked Problem of Disproportionality

The disproportionate representation of poor, working class, and racial/ethnic minority students in special education is a wicked policy problem because its formulation involves choosing among alternative problem interpretations and associated consequences. Integrating the work of Patricia Hill Collins and Nancy Fraser, the authors propose intersectional needs politics as a two-part meta-frame for conceptualizing the disproportionality problem, which they use to show how an interplay of individual and structural forces has shaped the relationship between oppression and activism in the disability rights and civil rights movements, and to argue that framing disproportionality solely as a problem of special education practice ignores a key institutional function of special education in an unequal, stratifi ed, and racialized education system. They also use the meta-frame to show how provisions of the Individuals with Disabilities Education Act perpetuate the disproportionality problem and on this basis offer ...

Accessing Transit as Universal Design

Universal design is a design philosophy couched in a public discourse of social inclusion. Spurred by disability civil rights legislation, growth of the older population, the information revolution, and markets, universal design has become a global design paradigm. This article reviews global dimensions of the paradigm and implementation strategies related to public transportation. Given universal design's overall inclusionary values beyond American Disability Act standards, the article asks, What is universal design's potential for redressing sociospatial exclusion among mobility-disadvantaged populations? Using a multitiered social exclusion/accessibility framework, the article addresses this question and draws conclusions about universal design applied to transit in the United States.

Response to Section I: Dis-ability

Response to Section I:Dis-ability Thomas W. Laqueur (bio) These essays move from the particular to the cosmic with vertiginous speed. Tobin Siebers's essay is the most leisurely and, so I thought at first, least threatening; it begins by announcing its subject as passing and moves to an engagement with Eve Kosofsky Sedgwick on the epistemology of the closet—the ways in which the disability closet is, and is not, like that of homosexuality. Almost halfway through we are still more or less securely on well-trod academic ground: What are we to make, Siebers asks, of Joan Riviere's analysis of the intellectually competent woman who puts on a masquerade of feminine flirtation to gain acceptance among her male colleagues? Riviere interprets this behavior as the result of a psychopathology—sadism, rivalry, and desire for supremacy. Siebers, quite rightly, rejects this turn to medicine instead of to politics and finds it particularly offensive in light of the role medicine has played in subjecting women, queers, disabled people, and others. We seem to be in for an analysis of the politics of disability masquerade—of exaggerating, minimizing, displaying, or not displaying some mental or physical feature or some prosthesis associated with them. The narratives that he offers show, he says, how people "manage the stigma of social difference." Fair enough. "Manage" is a general way of including the overtly political along with less-structured negotiations. But then comes a claim to be reckoned with: disability narratives are urgently important because "they posit a different experience that clashes with how social existence is usually constructed and recorded." They are the basis of identity politics and allow people with different disabilities to tell a story about their common cause. Now here are very big claims—about creating the general from the particular, about the possibility of transcendence—that one could quarrel with for some time. The other papers move more quickly. In "Meditation, Disability, and Identity," Susan Squier proposes that the new identity shaped by [End Page 61] the encounter of disability and meditation can decenter Western medical practice from its exclusively positivist role. This seems a modest claim. One combatant in the struggle for disability civil rights whom Squier quotes argues that just as gay people "automatically understand that gender roles are mostly arbitrary constructions," so "disabled people . . . understand about the illusory nature of our attachment to the body." Another of her narrators seems less sanguine: "[G]reat bravery . . . [the] acceptance of fate, the splendid triumph of spirit over physical self—these were all put-up jobs." Here, the relationship between body and mind (for want of a better word) is up for grabs as urgently as it was in the theology of resurrection and eternal life which so absorbed theologians and poets. Donne worried his whole life about just how arbitrary his particular body was to what he hoped would be his resurrected self. Finally, Sander Gilman's learned account of the putative relationship between fat and Jewishness over the ages and his reading of a novel with a thin protagonist and his fat friend—the Don Quixote buddy narrative—is situated in the effort to understand what counts as healthy and what as ill and provides an entrée into a "wide range of interlocking questions about the cultural construction of the body." It is even more about how we read the bodies around us to make sense of the social world; it is about a physiognomy writ large. I say this by way of emphasizing the huge ambitions of disability studies and the consequent impossibility of my addressing the larger claims—or even the many smaller ones—of these three essays with the seriousness they deserve. Almost any paragraph demands pages. That being impossible under the circumstances, I will offer instead two short narratives with a message, representative anecdotes with a point if not an argument. My moral comes at the end and not at the beginning where Siebers places his. Disability, Medicine, and the State I was at a conference once in the Netherlands where one of my fellow speakers was a Dutch physician whose job it was to define ugliness for the purpose of...