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Individual managers may make judgements and decisions which reflect social expectations rather than organisational policy. Society generally requires that individuals with an illness take leave from their work, seek medical assistance and return when they are well. This is not possible for individuals with chronic illness. By its nature, chronic illness has no cure. Individuals who are diagnosed with diseases such as rheumatoid arthritis, diabetes or inflammatory bowel disease and who also undertake paid employment may need to disclose their illness and seek some form of accommodation in their workplace. Understanding attitudes of managers plays a significant role in the success of managing work and chronic illness. This article examines the working experiences of women with chronic illness where the attitudes of managers were less understanding.
The experiences of academics with disability have received modest but growing attention internationally, but virtually none in the Australian context. This article outlines research findings from a study examining their experiences at a large Australian university. The article uses a materialist framework to demonstrate how capitalist social relations shape and demarcate an ‘ideal university worker’, how disabled workers find it difficult to meet this norm, and the limited assistance to do so provided by managers and labour relations policy frameworks. The research findings point to a profound policy gap between employer and government disability policy inclusion frameworks and the workplace experience of academics. This breach requires further investigation and, potentially, the development of alternate strategies for workplace management of disabilities if there are to be inroads towards equity.
Health information systems (HIS) are crucial for guiding sound public health policies and programs. Information systems are complex entities formed of diverse parts with one common plan and purpose. A critical feature of information systems is that their components have regular interactions and interdependences. The systems should be flexible and adaptable to changes in burden and circumstances. Building health information systems should start by complementing what is currently in place and improving existing systems. It should use new technologies and include training for collectors and users. Most importantly, the data and findings should be rigorously analysed, interpreted, translated, disseminated and used to inform implementation. In this chapter, we provide a brief review of HIS and an example using the Global Burden of Disease as a case study of how different sources of HIS are used to estimate the burden of a disease to guide policies and programs.
Bouvia v. Superior Court was a California decision from 1985 in which a twenty-eight-year-old quadriplegic woman sought to have a feeding tube removed and to refuse any further lifesaving measures. The original opinion held that a competent adult has the right to refuse life-sustaining treatment but its description of “the ignominy, embarrassment, humiliation and dehumanizing aspects created by her helplessness” prompts this chapter’s authors to question whether the original court supported Bouvia’s decision because of her right to choose or because the justices believed her life was not, in fact, worth living. Professor Barry Furrow proffers a poetic feminist rewrite focusing on the factors that were important to Bouvia, rather than her inability to perform the roles that concerned the original court. Furrow also considers whether recognizing an autonomy “right” in this case ignores the larger issue of lack of resources to support disabled people. Professor Joan Krause’s commentary illuminates the original court’s decision to focus on the principle of personal autonomy to resolve this dispute - and thus to ignore any broader public responsibilities to the disabled community.
Conservatorship of Valerie N. is the next case in this volume. The original 1985 opinion from the California Supreme Court concerned an “adult developmentally disabled daughter,” whose parents wished to have her surgically sterilized because she was (according to the parents) sexually aggressive towards men. Although the original opinion held that the California law did not authorize the sterilization of Valerie the case is nonetheless ripe for a feminist rewrite. Professor Doriane Lambelet Coleman’s feminist judgment demonstrates how feminism requires attention not only to women’s issues in general but also to the woman herself, and not only to childbearing (or not) but also to sexuality separate from its procreative aspects. Professors Cynthia Soohoo and Sofia Yakren’s commentary situates the case in terms of how sexism and ableism shape attitudes towards sexuality, reproduction, and health care decision-making powers of women with disabilities. It also discusses the evolving understanding of capacity to make medical treatment decisions and alternatives to traditional surrogate decision-making.
This chapter introduces the subject of prostheses, prosthesis use, and prosthesis users in classical antiquity. It compares contemporary, historical, and ancient historical prostheses and indentifies certain types of continuity across millennia. It undertakes a literature review of the current state of scholarship on impairment and disability in classical antiquity, highlighting how little attention has been paid to assistive technology by scholars to date. It explains the methodology that will be used in this monograph. It provides an overview of the different types of evidence that will be used (i.e. literary, documentary, archaeological, bioarchaeological). It outlines the contents of the monograph, chapter by chapter.
This chapter builds upon feminist reinterpretations of Darwinian evolutionary theory to reconsider how the processes of variation, heritability, and natural selection do not preclude the possibility of thriving disabled life. Despite the cooptation of Darwinian thinking by later social Darwinists and eugenicists that led to the mass institutionalization and genocide of disabled people, I argue that Darwin’s scientific writings provide the unexpected foundations for a counter-eugenic reading of evolution in their conception of life as perpetually changing and thus open-ended. From the perspective of disability, the value of an organism’s adaptation and form cannot be predetermined by any static notion of fitness that presumes ablebodiedness as a prerequisite for viable life. By reading evolutionary temporality and Darwin’s own disabled lived experience through disability theory’s conception of crip time, I ultimately suggest that Darwinian evolution imagines disability not reductively as an evolutionary dead end but instead as the variable adaptation of human survival.
The year 2020 was an awakening for some. For others, it reiterated the persistent social injustice in the United States. Compelled by these events, 30 diverse individuals came together from January to May 2021 for a semester-long seminar exploring inequity in archaeological practice. The seminar's discussions spotlighted the inequity and social injustices that are deeply embedded within the discipline. However, inequity in archaeology is often ignored or treated narrowly as discrete, if loosely bound, problems. A broad approach to inequity in archaeology revealed injustice to be intersectional, with compounding effects. Through the overarching themes of individual, community, theory, and practice, we (a subset of the seminar's participants) explore inequity and its role in various facets of archaeology, including North–South relations, publication, resource distribution, class differences, accessibility, inclusive theories, service to nonarchaeological communities, fieldwork, mentorship, and more. We focus on creating a roadmap for understanding the intersectionality of issues of inequity and suggesting avenues for continued education and direct engagement. We argue that community-building—by providing mutual support and building alliances—provides a pathway for realizing greater equity in our discipline.
Despite the high proportion of stroke patients with a pre-existing impairment, patients with disabilities are often excluded from stroke treatment trials. Trials are designed for “perfect patients”: patients who are functionally independent and thus generally younger with fewer comorbidities; ironically, such patients are less likely to experience stroke than those with premorbid disability. Exclusionary practices in trials may translate into disparities in stroke care in practice. Through a review of literature, our purpose is to illuminate how people with disabilities are treated across the care continuum following a stroke.
We completed a qualitative systematized review of articles pertaining to the care of patients with premorbid disability and stroke and their outcomes. Using a critical disability studies' theoretical lens, we analyzed inequity across the stroke care continuum.
Among 24 included studies, we found evidence that people with disabilities did not receive equitable access to treatment ranging from being admitted to stroke units to receiving post-stroke rehabilitation. However, observational studies suggest that stroke therapies may be beneficial in selected patients with disabilities when measures of success are framed more achievable (e.g. return to pre-stroke status). This leaves us concerned about how people with pre-existing impairments might be structurally disabled within current systems of stroke care.
We use our critical disability studies' theoretical lens to argue that an intersectional approach to stroke treatment is much needed if we are to remedy structural inequities embedded throughout the care continuum.
In this chapter we look at the social inequalities of physical health in relation to the poorer physical health experienced by people with mental health conditions and their access to health services. People with mental health conditions often experience a ‘triple jeopardy’: they experience an excess of physical health problems relative to their peers in the general population, are more likely to get serious forms of physical illness, and, once diagnosed, are more likely to die within five years. They face greater difficulties accessing good-quality healthcare than people without mental health conditions. These distinct findings also give us an illustration of the complex pathways involved in the exclusionary processes, this time linking mental and physical health conditions and outcomes through a synchrony of broader structural factors, social inequalities, early life experiences, life course adversities, risky health behaviours, the nature of the mental health condition, the medications prescribed, and the discriminatory attitudes prevalent in public services and in broader society. They also point to the need to clearly appreciate the disabilities associated with mental health conditions and to develop broad public health approaches to address these inequalities in health outcomes.
The adoption of the Convention on the Rights of Persons with Disabilities (CRPD) represents an important and (potentially) progressive development in the protection framework under international humanitarian law (IHL). Article 11 of the CRPD specifically obliges States to protect persons with disabilities from harm in situations of risk, including armed conflict, consistent with IHL and human rights law. The CRPD framework signals the need to address the traditional framing of disability under IHL and to draw from human rights concepts in the CRPD in order to inform the protection accorded to persons with disabilities in armed conflict.
This article is divided into four main parts: the first three address three main lines of inquiry, while the fourth is forward-looking. The first part analyzes the framing and construction of disability in IHL and the implications of such framing for the protection of persons with disabilities. The second part analyzes fundamental IHL rules in an effort to demonstrate how the framing of disability and the protection framework of the CRPD can be used in the application of IHL. The third part identifies some specific problem areas ripe for further disability scoping and harmonization of the CRPD and IHL. Looking forward, the fourth part identifies entry points for focused action and research aimed at bringing about the kind of dynamic treaty practice envisioned by Article 11 of the CRPD.
Academics rarely raise the need to consider persons with disabilities when preventing, investigating and prosecuting international humanitarian law (IHL) violations. Worse still, no actual attempts have been made to include a disability perspective into practical guidance and monitoring mechanisms. This article addresses that void by laying out how existing yet unutilized IHL obligations can be leveraged to repress and suppress disability-based IHL violations. In doing so, the article will detail how fact-finding approaches, criminal investigative processes and reporting methods for IHL violations can be inclusive of persons with disabilities and thus more appropriately address the endemic under-representation of a disability perspective in the planning and execution of military operations during armed conflict and the specific crimes they thereby suffer. Additionally, this article will articulate concrete changes that should be made to international criminal law procedures for prosecuting war crimes to provide recognition and accountability for disability-based IHL violations, as has been done for violations against women and children. Finally, this article will diagnose the state of the law to address any legal challenges or hurdles that may hamper the inclusion of a disability perspective in fulfilling the IHL obligation to reduce and address violations of humanitarian law.
This paper presents an inexhaustive but thorough review of the evidence of violence against persons with disabilities that came before, or ought to have been known to, the prosecutors of the international criminal tribunals for the former Yugoslavia, Rwanda and Sierra Leone. This research demonstrates that despite significant and compelling evidence from investigators, journalists and witnesses, gross violations against persons with disabilities were largely ignored by the prosecution or treated merely as aggravating factors at sentencing. These crimes could instead have been characterized as an “other inhumane act” prosecutable as a crime against humanity, which would have emphasized the gravity of the crimes, provided recognition of the victims’ suffering, imposed criminal sanctions on those responsible, and unequivocally condemned violence against persons with disabilities during armed conflict.
Personalisation in disability support funding is premised on the notion that services come together through the individual. Where people have very complex needs, many individuals and their supporters find it difficult to facilitate services themselves. This article examines the Integrated Service Response (ISR), an Australian response to complexity implemented during the National Disability Insurance Scheme (NDIS) roll-out. We explore its facilitation of collaboration in the context of the NDIS.
Results from interviews and observation of collaboration suggest there are multiple challenges with effective inter-organisational collaboration under the NDIS, including communication between services, and the loss of previous ways of addressing complexity and crisis. Participants valued ISR as a response to complexity, including its ability to facilitate collaboration by ‘getting the right people at the table’.
While programmes such as ISR may improve inter-organisational collaboration around specific clients, broader ongoing systemic approaches are required to address system-wide issues.
Autonomous weapons systems have been the subject of heated debate since 2010, when Philip Alston, then Special Rapporteur on Extrajudicial, Summary, or Arbitrary Executions, brought the issue to the international spotlight in his interim report to the United Nations (UN) General Assembly 65th Session. Alston affirmed that “automated technologies are becoming increasingly sophisticated, and artificial intelligence reasoning and decision-making abilities are actively being researched and receive significant funding. States’ militaries and defence industry developers are working to develop ‘fully autonomous capability’, such that technological advances in artificial intelligence will enable unmanned aerial vehicles to make and execute complex decisions, including the identification of human targets and the ability to kill them.”1 Later, in 2013, Christof Heyns, who was Special Rapporteur for Extrajudicial, Summary or Arbitrary Executions at the time, published a report that elaborated further on the issues raised by what he called “lethal autonomous robotics”.2 Following a recommendation by Advisory Board on Disarmament Matters at the UN General Assembly 68th Session, the Convention on Prohibitions or Restrictions on the Use of Certain Conventional Weapons Which May Be Deemed to Be Excessively Injurious or to Have Indiscriminate Effects, as amended on 21 December 2021, started discussing autonomous weapons systems in 2014. Then, the Group of Governmental Experts on Emerging Technologies in the Area of Lethal Autonomous Weapons Systems (GGE on LAWS)3 was created in 2016 to focus on this issue.4 While the group has kept meeting since then, no clear steps have been taken yet towards a normative framework on autonomous weapons as of September 2022.
In all these years, persons with disabilities – including conflict survivors – have not been included in discussions, nor has the disability perspective been reflected in international debate on autonomous weapons. Only recently has there been any effort to consider the rights of persons with disabilities when examining ethical questions related to artificial intelligence (AI). In this article, we will examine how and why autonomous weapons have a disproportionate impact on persons with disabilities, because of the discrimination that results from a combination of factors such as bias in AI, bias in the military and the police, barriers to justice and humanitarian assistance in situations of armed conflict, and the lack of consultation and participation of persons with disabilities and their representative organizations on issues related to autonomy in weapons systems.
This study analyses the situation of persons with disabilities caught up in armed conflict in the Democratic Republic of the Congo, in particular in North Kivu Province. The study goes beyond the few statistics available – which show the vulnerability of persons with disabilities during humanitarian crises – to identify the obstacles to taking persons with disabilities into account in humanitarian action in North Kivu. As a result, the study provides practical recommendations to overcome these obstacles, fill in the gaps in humanitarian action and improve the situation of persons with disabilities by ensuring efficient and effective protection in times of armed conflict.
It is generally accepted that morally justified healthcare rationing must be non-discriminatory and cost-effective. However, given conventional concepts of cost-effectiveness, resources spent on disabled people are spent less cost-effectively, ceteris paribus, than resources spent on non-disabled people. Thus, it is reasonable to assume that standard cost-effectiveness discriminates against the disabled. Call this the disability discrimination problem. Part of the disability discrimination involved in cost-effectiveness stems from the way in which health-related quality of life is accounted for and measured. This paper offers and defends a patient-sensitive account of health-related quality of life, which can effectively make cost-effectiveness less discriminatory against the disabled and thus more morally justified.
The Convention on the Rights of Persons with Disabilities has brought about a major shift in our understanding of and approach to disability, not least in terms of its implications for other frameworks of international law. Yet, considerations with regard to disability in the context of international humanitarian law (IHL) remain the exception, meaning that persons with disabilities in practice often do not benefit from the same degree of protection as others who find themselves in situations of armed conflict. These shortcomings can be further exacerbated by an interplay between impairment and other individual characteristics such as gender and age, resulting in at times exceptional disadvantages faced by women and girls with disabilities. The present article therefore aims to propose ways in which our modern-day understanding of disability may inform the interpretation and application of IHL, as well as to showcase how the interaction between disability and other characteristics such as gender and age will shape said interpretation and application.
Despite the fact that persons with disabilities comprise, according to current statistics, a significant portion of conflict-affected communities and are disproportionately affected by armed conflict, the lack of inclusion in accountability mechanisms for acts amounting to crimes under international law is notable. The Convention on the Rights of Persons with Disabilities (CRPD) provides a framework for mainstreaming inclusive investigation practices and promoting greater accountability, through application of the principles of autonomy, non-discrimination and accessibility. This article makes suggestions for the operationalization of this CRPD framework through specific recommendations for accountability mechanisms, alongside legal opportunities for recognition of crimes affecting persons with disabilities and crimes resulting in disability. A case study of the so-called Islamic State of Iraq and the Levant and persons with disabilities in Iraq is used to illustrate the application of recommendations to ensure that persons with disabilities are no longer the “forgotten victims of armed conflict”.
Article 11 of the Convention on the Rights of Persons with Disabilities requires that the rights and protections of the Convention not be derogated or suspended during “situations of risk, including situations of armed conflict”. Even so, persons with disabilities are still often the group most disproportionately impacted by armed conflict. This reality is not due to a failing of international humanitarian law to protect and consider persons with disabilities; rather, it is due to a failure to mainstream disability into the application of and approach to existing protection frameworks. Impactful mainstreaming of disability necessitates the inclusion of all relevant mutually reinforcing legal frameworks and traditions. By examining four main areas – military operations, evacuation, humanitarian assistance, and long-term assistance and services – this paper argues that the protection of persons with disabilities in armed conflict, and specifically within Muslim contexts, will be enhanced through the inclusion and consideration of Islamic law.