Faculty Bibliography
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The exclusion of people with disabilities from clinical research without appropriate justification is discriminatory, is counter to federal regulations and research guidelines, and limits study generalizability. This matter is understudied, and data on the disability status of trial participants are rarely collected or reported. We analyzed ninety-seven recent interventional protocols in four therapeutic areas registered on ClinicalTrials.gov. Eighty-five percent of protocols allowed broad investigator discretion to determine eligibility, whereas only 18 percent explicitly permitted people with disabilities to use forms of support (such as supported decision making or assistive devices) to facilitate study participation. Eligibility criteria affecting people with disabilities included exclusions for psychiatric (68 percent), substance use (62 percent), HIV or hepatitis (53 percent), cognitive or intellectual (42 percent), visual (34 percent), hearing (10 percent), mobility (9 percent), long-term care (6 percent), and speech and communication (3 percent) disability-related domains. Documented justification was provided for only 24 percent of these exclusions. We recommend greater scrutiny of study eligibility criteria, scientific or ethical justification of exclusions, and accessible study design.
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For those of us who support unions, we have an unfamiliar feeling this Labor Day. It’s a feeling of hope and celebration. This is unfamiliar territory because union organizing has been in a free fall for decades now. But we can smile this Labor Day because American workers have delivered a lot to celebrate and, […]
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On June 24, 2002, the US Supreme Court ended the constitutional right to abortion in Dobbs v Jackson Women’s Health Organization. The Court’s majority decision authored by Justice Samuel Alito was substantially the same as a draft opinion leaked a month earlier. The regulation of abortion will now be decided by the states. In this Viewpoint, we explain the Dobbs ruling and what it means for physicians, public health, and society.
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This study aims to examine the subjective perspectives on marriage of Arabs with disabilities living in Israel. Semi-structured interviews were conducted among 15 Arabs in Israel with physical, visual impairment, and mental disorders. Themes were generated using thematic analysis. Two main recursive and intertwined themes emerged: reflections about marriage and the reality of marriage. The real-life situation feeds into social perceptions: when the disabled person sees that people with disabilities hardly marry, this increases self-stigma and the fear of rejection. Similarly, social and personal perceptions exacerbate the situation on the ground. Gender also played a key factor with women with disabilities facing more stigma and negative experiences relative to men with disabilities. The findings call for raising awareness of the marital rights of Arabs with disabilities and combating negative social attitudes towards them as first steps to creating a more accessible and inclusive environment, with particular attention to gender differences.
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In Cedar Point Nursery v. Hassid, the Supreme Court holds that a California regulation granting union organizers limited access rights to agricultural property interferes with the property owners’ right to exclude and therefore constitutes a per se physical taking. But the Court also decides that there are exceptions to its per se takings rule. Most relevant, the Court holds that the government, without effecting a taking, can require property owners to cede access rights as a condition of receiving benefits or in order to avoid a risk posed to the public, as long as the benefits conveyed or the risks avoided constitute a legitimate police power purpose and as long as the access condition bears an essential nexus and rough proportionality to that purpose. This essay shows that Cedar Point is wrong on its own terms because the union access provision that the Court holds to be a taking fits comfortably within the Court’s exception to its takings rule. This is so for two reasons. One, the access regulation – and the general labor statute it implemented – was part of California’s approach to ending violence that had come to define agricultural union organizing in the 1960s and 1970s, violence so rampant that many contemporaries described it as “war.” Two, the access provision facilitated the negotiation of collective bargaining agreements containing robust mechanisms for pesticide safety, pesticides whose use posed a dire threat to farmworker and consumer health. Understood this way, the access provision is germane to two quintessential police power purposes: public safety and health. Moreover, the limited access rights provided by the regulation bear a clear nexus to those purposes and are, to say the least, roughly proportional to the costs they help avoid.
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Most jurists and scholars today take for granted that the U.S. Constitution imposes unwritten but judicially enforceable limits on how Congress and the President may construct their interrelationships by statute. This “juristocratic” understanding of the separation of powers is often regarded as a given or inherent feature of American constitutionalism. But it is not. Instead, it emerged from a revanchist reaction to Reconstruction. As an ascendent white South violently returned to power in Washington, its intellectual supporters depicted a tragic era in which an unprincipled Congress unconstitutionally paralyzed the President in pursuit of an unwise and unjust policy of racial equality. Determined to prevent Reconstruction from reoccurring, historians, political scientists, and a future Supreme Court Justice by the name of William Howard Taft demanded judicial intervention to prevent Congress from ever again weaving obstructions around the President. This Lost Cause dogma became Supreme Court doctrine in Myers v. United States. Authored by Chief Justice Taft, the opinion was the first to condemn legislation for violating an implied legal limit on Congress’s power to structure the executive branch. It is today at the heart of an ongoing separation-of-powers counterrevolution. That counterrevolution has obscured, and eclipsed, a more normatively compelling conception of the separation of powers—one that locates in representative institutions the authority to constitute the separation of powers by statute. This “republican” conception accepts as authoritative the decision of the political branches as to whether a bill validly exercises the Necessary and Proper Clause to carry into execution the powers and interrelationships of Congress, the President, and the executive branch. Where the juristocratic separation of powers undermines both the legal legitimacy of the Court and the democratic legitimacy of the political branches, the republican separation of powers sustains an inherently provisional constitutional order—one grounded in deliberation, political compromise, and statecraft.
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Chester A. Finn et al., How Persons with Intellectual Disabilities Are Fighting for Decision-Making Rights, 121 Current Hist. 30 (forthcoming 2022).
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The COVID-19 pandemic resulted in many school districts in countries around the world transitioning rapidly to partial or complete remote learning. These disruptions affected all children’s education, but students with disabilities (SWDs) were particularly at-risk because of the challenges of providing accessible support and services through remote teaching programmes. We examine the experience of SWDs in 24 United States school districts of instructional and adaptation models between August 2020 and February 2021. Districts varied in their approaches to remote instruction, compensatory services and prioritising SWDs for returning to the classroom before other students. Districts also varied substantially in the information provided regarding Distance Learning Plans, changes to Individualised Education Programmes and related service delivery. This analysis underscores the need for minimal standards for meeting the educational needs of SWDs during school closures as well as for disseminating good practices on minimising the effects of disruptions in future public health crises. These results have implications for existing practices and future research in the U.S. and other countries with widely disseminated decision making surrounding educational delivery during crises.
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Stigma against mental disability within the medical field continues to impose significant barriers on physicians and trainees. Here, we examine several implications of this stigma and propose steps toward greater inclusion of persons with mental disabilities in the physician workforce.
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Relying chiefly on the combination of costly, unsystematic, and unreliable FDA monitoring and state negligence actions, the current postapproval system for controlling medical device risks falls far short of assuring optimal levels of safety. The reform proposal we advance comprehensively addresses these law enforcement deficiencies. The contemplated changes are straightforward and simple to implement yet would substantially reduce cost while increasing the effectiveness of both FDA monitoring and civil liability deterrence. Monitoring would be improved by requiring first-party insurers to investigate and report to the FDA the potential existence of a causal connection between the personal injury for which they are funding treatment and the patient’s (insured’s) use of or exposure to a medical device. The FDA would be authorized to enlist DOJ Civil Division enforcement of a federal cause-based strict liability action against the medical device manufacturer. The manufacturer would bear liability in full, with no reduction for risk contributions from the injured patient or other parties and would pay damages in total to the US Government. We explain the regulatory advantages of this new regulatory rule of cause-based strict liability relative to conventional rules of negligence and strict liability.
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Regulators have been more permissive for medical devices compared to their drug and biologic counterparts. While innovative products can thereby reach consumers more quickly, this approach raises serious public health and safety concerns. Additionally, the nature of medical devices is rapidly changing, as software has become as important as hardware. Regulation must keep pace with the current developments and controversies of this technology. This volume provides a multidisciplinary evaluation of the ethical, legal, and regulatory concerns surrounding medical devices in the US and EU. For medical providers, policymakers, and other stakeholders, the book offers a framework for the opportunities and challenges on the horizon for medical device regulation. Readers will gain a nuanced overview of the latest developments in patient privacy and safety, innovation, and new regulatory laws. This book is also available as Open Access on Cambridge Core.
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Individuals living with disabilities are underrepresented in the physician workforce, despite benefits of inclusion. This article describes how both ableism in admissions processes and expectations set by technical standards can perpetuate harm. The authors advocate for active attention to disability diversity and equity in medical school admissions.
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When digital content and technologies are designed in a way that is inaccessible for persons with disabilities, they are locked out of commerce, education, employment, and access to government information. In developing areas of the world, as new technical infrastructures are being built, it is especially important to ensure that accessibility is a key design goal. Unfortunately, nearly all research on Information and Communication Technology (ICT) accessibility and innovation for persons with disabilities-whether from the legal, technical, or development fields-has focused on developed countries, with very little being written about developing world initiatives. Accessible Technology and the Developing World aims to change this, by bringing increased attention to ICT accessibility in developing areas. This book brings together a unique combination of contributors with diverse disciplinary backgrounds, including authors from well-known non-governmental organizations, significant United Nations entities, and universities in both the developing and developed world. Together, they present a unique and much needed review of this critical and growing area of work, and primarily address three core themes - the lack of attention given to innovations taking place in the developing world, the need to ensure that infrastructures in the Global South do not present barriers to people with disabilities, and the need to exercise caution when applying techniques from the Global North to the Global South that won't transfer effectively. This book will be of use to researchers in the fields of civil rights, development studies, disability rights, disability studies, human-computer interaction and accessibility, human rights, international law, political science, and universal design.
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This article examines whether and how the circumstances of Colombian ex-combatants with disabilities were recognized in the disarmament, demobilization, and reintegration (DDR) processes in the period following the adoption of the 2016 peace agreement. Our results suggest severe procedural and substantive shortcomings during the drafting of the peace agreement and the implementation of the DDR processes that exacerbated the exclusion of ex-combatants with disabilities from available opportunities for their social, economic, and political reintegration. We conclude that a better understanding of the disabling impact of conflict and the experiences of impairment and disability could have mitigated such neglect.
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COVID-19 has prompted debates between bioethicists and disability activists about Crisis Standards of Care plans (CSCs), triage protocols determining the allocation of scarce lifesaving care.
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How can businesses operate profitably and sustainably while ensuring that they are applying human rights? It is possible to apply human rights while at the same time decreasing cost and making human rights contribute to profits. Yet business efforts alone are insufficient, and states must possess sufficient regulatory power to work together with businesses and investors – not only to improve human rights but also to foster development more broadly. This textbook, the first of its kind, explores all aspects of the links between business operations and human rights. Its twenty-five chapters guide readers systematically through all the particular features of this intersection, integrating legal and business approaches. Thematic sections cover conceptual and regulatory frameworks, remedies and dispute resolution, and practical enforcement tools. Ideal for courses in business, law, policy and international development, the book is also essential reading for managers in large corporations.
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This landmark publication—the first of its kind in 30 years—enables advocates to successfully represent veterans who unjustly received less-than-honorable or other stigmatizing discharges. Written by attorneys from the Legal Services Center of Harvard Law School’s Veterans Legal Clinic and Connecticut Veterans Legal Center, this book helps bring honor and life-altering benefits to veterans.
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The institutional dialogue among the Committee on the Rights of Persons with Disabilities and other human rights tribunals has led to greater protection of rights. But not all courts and treaty bodies have accepted the Committee’s absolutist position on legal capacity. The chapter illustrates the multiple human rights-based approaches to capacity and decision-making, and describes how the Committee’s absolutism endangers many of the people living with moderate or severe dementia whom it supposedly benefits.
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Persons with disabilities have historically been subjected to egregious human rights violations. Yet despite well-documented and widespread harms, one billion persons with disabilities remain largely neglected by the international laws, legal processes, and institutions that seek to redress those violations, including crimes against humanity (CAH). This Article argues for the propriety of prosecuting egregious and systemic human rights violations against persons with disabilities as a CAH, and, in addition, asserts the necessity of ensuring the accessibility of international criminal processes to those individuals. The UN Security Council's recent acknowledgement of the enhanced risk that persons with disabilities experience during armed conflict, the growing evidence of widespread human rights violations against them, and an ongoing effort to forge a UN convention on the prevention and punishment of CAH make these arguments especially timely.
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Since adoption of the Convention on the Rights of Persons with Disabilities and the interpretive General Comment 1, the topic of legal capacity in mental health settings has generated considerable debate in disciplines ranging from law and psychiatry to public health and public policy. With over 180 countries having ratified the Convention, the shifts required in law and clinical practice need to be informed by interdisciplinary and contextually relevant research as well as the views of stakeholders. With an equal emphasis on the Global North and Global South, this volume offers a comprehensive, interdisciplinary analysis of legal capacity in the realm of mental health. Integrating rigorous academic research with perspectives from people with psychosocial disabilities and their caregivers, the authors provide a holistic overview of pertinent issues and suggest avenues for reform.
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Ethical obligations to minimize harms and maximize benefits of diagnosis and treatment of disorders without biomarkers include navigating difficult-to-measure, perhaps clinically inexplicable, symptoms. Among potential harms are public stigma, self-stigma, label avoidance, and the negative influence these stigmas have on self-esteem, quality of life, employment, and housing. Among potential benefits are patients becoming active agents in managing their illnesses, social acceptance, and access to evidence-based treatments. Ethical complexities clinicians face when trying to develop treatment plans while heeding key details from patients’ narrative accounts prompt questions about how to best adhere to evidence in understudied domains of medicine.
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Within Israeli Muslim society, men with intellectual disabilities are likely to marry nondisabled women through arranged marriages and create families. This article explores the role of grandparents with these families from the perspective of each family’s social worker. A thematic analysis was conducted of 19 semistructured interviews with Muslim social workers serving Muslim families with intellectually disabled fathers. Consistent with cultural norms, paternal grandparents are extremely involved in the lives of these couples and hold responsibilities in many aspects of these couples’ family lives. Social workers reported that the nondisabled wives, however, viewed the engagement as intrusive and controlling. Maternal grandparents’ contributions were crucially supportive, albeit limited by Muslim cultural norms that placed households under paternal family control. Social workers had conflicted feelings regarding paternal grandparent involvement. Social workers working with Muslim fathers with intellectual disabilities should promote supportive paternal grandparent involvement and ensure that such engagement does not undermine the autonomy or well-being of the nondisabled mothers. Practice guidelines are presented.
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"Bring your whole self to work" remains a common mantra of supporters of workplace diversity, equality, and inclusion ("DEI"). For example, disability rights advocates have long contended that hiding or downplaying one's disability from one's colleagues at work "create[s] an invisible layer of additional work for the individual" in being accepted at the job and negatively affects productivity. LGBTQ+ rights advocates have raised similar points, noting that hiding or downplaying one's sexual orientation or gender identity from one's colleagues hinders internal advancement of LGBTQ+ workers. As recently as 2019, however, a Deloitte study found that sixty-one percent of workers hid or downplayed one or more of their identities from their colleagues at work.
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The Supreme Court's June 2020 opinion in Department of Homeland Security v. Thuraissigiam unjustifiably reopens settled questions about the Habeas Corpus Suspension Clause of the U.S. Constitution, and endangers everyone -- U.S. citizens and noncitizens alike.
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Section 615(m) of the Individuals with Disabilities Education Act (IDEA) permits states to transfer the rights accorded parents to adult students with disabilities. While some students, parents, and educators may seize the “transfer of rights” as an opportunity for growth and empowerment as students transition into adulthood, for many others it is a consequential crossroads for choosing between risking to close avenues for enforcing students with disabilities’ educational rights in the short term and seeking guardianship orders that may restrict myriad decision-making rights into the future. Worse, the IDEA’s transfer-of-rights requirements are frequently misstated by researchers, judges, and civil society organizations, thereby confusing rather than clarifying parents and students’ choices. This Article surveys the state-level transfer-of-rights rules and guidance that have contributed to raising the stakes of transfer-of-rights considerations. While 50 of 54 jurisdictions surveyed choose to transfer parental rights to adult students as the IDEA permits, we found that only 40% of transfer-of-rights statutes or regulations in these “transfer” jurisdictions comply with IDEA requirements. Also, only 40% of these statutes or regulations establish optional procedures for appointing educational representatives for students considered unable to give informed consent, while fewer recognize guardianship alternatives that effectively avoid parental rights transfers (36%). Only three states, Connecticut, Indiana, and Virginia, have transfer-of-rights regulations that appear to do all three. We also found that state educational agencies’ guidance documents too frequently misinform parents, students, and educators about transfer-of-rights rules (42%) or fail to mention guardianship alternatives (70%). We conclude with commonsense recommendations for how state policymakers, the U.S. Department of Education, and special education adjudicators can intervene to lower the stakes caused by many jurisdictions’ uneven transfer-of-rights rules and guidance.
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Persons with disabilities have historically been discriminated against by society, including fulfillment of the right to equal access to health care. The more egregious practices, historically as well as today, include outright denials of access to health care, involuntary sterilization, forced institutionalization, coerced treatment, and substituted decision-making. Discrimination also occurs by more insidious practices. For instance, the public health construct of DALYS (disability adjusted life years) “neutrally” devalues the lives of persons with disabilities relative to the lives of those without disabilities. Along the same lines, commonly accepted norms and practices lessen the priority of persons with disabilities for essential procedures, such as organ transplants. Moreover, clinical bias disproportionately affects some disabled people, particularly those who occupy racialized, gendered, and sexually marginalized intersections. Finally, many otherwise laudable programs, such as United Nations HIV/AIDS programming, neglected for decades to include persons with disabilities. This essay considers types of clinical bias against patients with disabilities in the context of the COVID-19 pandemic, how such stigma impairs their equal access to health care, and how the application of international human rights norms would mitigate such impacts.
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A human rights-based approach (HRBA) to health has long been seen as an important way in which to address public health needs in a manner that is equitable and conducive to social justice. Yet the actual content of an HRBA to health remains unspecific, and therefore implementation remains heterogeneous. This situation is even more challenging in the field of mental health, where human rights considerations are particularly complex and have emerged out of a history of myriad violations. Even when research has been conducted into mental health, it has focused predominantly on the Global North, raising questions of contextual and cultural relevance. Accordingly, this study examined the issue from the perspectives of stakeholders in Kenya who consider their work or the services they use to be rights based. It explored the key principles and interventions deemed to constitute an HRBA to mental health care and psychosocial support, the perceived benefits of such approaches, and the main barriers and supports relevant for implementation. The results produced seven key principles and corresponding interventions. Among other things, it highlighted the importance of economic well-being and self-efficacy, as well as the reduction of barriers to implementation, such as stigma and lack of adequate resourcing. Two key tensions were apparent—namely, the un/acceptability of coercion and the role of traditional and faith-based modalities in an HRBA to mental health care and psychosocial support.
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This Article traces how and why the First Amendment has gone from a shield of the powerless to a sword of the powerful in the past hundred years. The central doctrinal role of “content neutrality” and “viewpoint neutrality” in this development is analyzed; the crucial tipping points of anti-Semitism, in Collin v. Smith, and pornography, in Hudnut v. American Booksellers, are identified. The potential for substantive equality to promote freedom of speech is glimpsed.
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Critics often contend that human rights litigation is not particularly useful in advancing human rights. Yet such critiques tend to miss the mark both because they demand too much of litigation—which is, of course, but one tool available to the human rights movement—and because they fail to understand the multiple goals, beyond court verdicts, of human rights plaintiffs and litigators.This article excavates those diverse goals, many of which have previously gone unexamined. It draws on insight gained from nearly a decade spent litigating a complex Alien Tort Statute suit that sought to hold corporations accountable for their role supporting and facilitating human rights violations in apartheid South Africa. This article also evaluates both successes and failures in the Apartheid case to explore the extent to which common critiques ring true.It would be foolhardy to claim that lawsuits alone can fundamentally improve respect for and protection of human rights. Still, this article concludes that litigation can be a powerful option for individuals or communities that have survived human rights abuse, particularly when deployed in tandem with other strategies, and that it played an important role for many stakeholders involved in the apartheid suit. In so doing, this article opens up fresh scholarly terrain and shares unique perspectives that may inform the work of other affected communities and human rights practitioners.
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Our country is wracked by two urgent crises – the COVID-19 pandemic and the plague of systemic racism. COVID-19 presents grave challenges to all of us, but it poses particular – and, in many cases, life-threatening – challenges to working people. Moreover, the costs of the pandemic are being borne disproportionately by low-wage workers, a population made up primarily of women and workers of color. As they work to keep the economy moving despite the pandemic, these workers are being asked to put their lives on the line in ways that are both unacceptable and unnecessary. Indeed, as the economy reopens, more and more workers will be put in harm’s way. Unless, that is, something fundamental changes about the way we approach worker voice and power. In this issue brief, we offer a set of recommendations designed to empower workers so that they are better positioned to cope with the ravages of COVID-19, keep themselves and their families safe, and build a more equitable economy than the one the pandemic shut down. There is strong bipartisan support for the recommendations we are suggesting. A large majority of likely voters support giving workers a formal voice in setting health and safety standards. Only 19% of likely voters said they opposed these reforms. View the full polling results here. As with the original Clean Slate report, the recommendations here are designed so that they apply to all workers regardless of whether the law classifies them as employees, independent contractors, or otherwise outside of traditional labor law’s protection. And a central premise of the Clean Slate for Worker Power project is that any attempt to empower workers must begin with the effort to make labor law, and the labor movement, fully inclusive of workers of color – workers who have faced exclusion from the start. When law empowers all workers to demand equitable treatment – including safe and healthy working conditions – workers can build the kind of nation we all deserve
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Suicide is a global problem and accurate assessment of risk for self-harm is critical. Even morally principled clinicians can manifest bias when assessing self-harm in patients with physical disabilities such as spinal cord injury (SCI). Assessment of self-harm is an obligation for health care clinicians and overestimating or underestimating risk may undermine a patient’s trust in their care, possibly leading to less engagement, increased apathy about having an interest in living, and less adherence to healthy treatment options.
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A history of Harvard Law School in the twentieth century, focusing on the school’s precipitous decline prior to 1945 and its dramatic postwar resurgence amid national crises and internal discord. By the late nineteenth century, Harvard Law School had transformed legal education and become the preeminent professional school in the nation. But in the early 1900s, HLS came to the brink of financial failure and lagged its peers in scholarly innovation. It also honed an aggressive intellectual culture famously described by Learned Hand: “In the universe of truth, they lived by the sword. They asked no quarter of absolutes, and they gave none.” After World War II, however, HLS roared back. In this magisterial study, Bruce Kimball and Daniel Coquillette chronicle the school’s near collapse and dramatic resurgence across the twentieth century. The school’s struggles resulted in part from a debilitating cycle of tuition dependence, which deepened through the 1940s, as well as the suicides of two deans and the dalliance of another with the Nazi regime. HLS stubbornly resisted the admission of women, Jews, and African Americans, and fell behind the trend toward legal realism. But in the postwar years, under Dean Erwin Griswold, the school’s resurgence began, and Harvard Law would produce such major political and legal figures as Chief Justice John Roberts, Justice Elena Kagan, and President Barack Obama. Even so, the school faced severe crises arising from the civil rights movement, the Vietnam War, Critical Legal Studies, and its failure to enroll and retain people of color and women, including Justice Ruth Bader Ginsburg. Based on hitherto unavailable sources—including oral histories, personal letters, diaries, and financial records—The Intellectual Sword paints a compelling portrait of the law school widely considered the most influential in the world.