Disability Critique Research Articles

Heritable human genome editing: correction, selection and treatment.

Heritable human genome editing (HHGE) to correct a nuclear gene sequence that would result in a serious genetic condition in a future child is presented as 'treatment' in various ethics and policy materials, and as morally preferable to the 'selection' practice of preimplantation genetic testing (PGT), which is subject to the disability critique. However, whether HHGE is 'treatment' for a future child, or another form of 'selection', or whether HHGE instead 'treats' prospective parents, are now central questions in the debate regarding its possible legalisation. This article argues that the idea of 'treatment' for a future child is largely a proxy for 'seriousness of purpose', intended to distinguish HHGE to avoid serious genetic conditions from less obviously justifiable uses; that HHGE is best understood, and morally justified, as a form of 'treatment' for prospective parents who strongly desire an unaffected genetically related child and who have no, or poor, options to achieve this; that HHGE would be morally permissible if consistent with that child's welfare; that legalisation is supportable with reference to the right to respect for private and family life under Article 8 of the European Convention on Human Rights; and that HHGE is morally distinguishable from PGT.

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Review of The Architecture of Disability Buildings, Cities, and Landscapes Beyond Access

David Gissen’s slim but packed The Architecture of Disability: Buildings, Cities, and Landscapes beyond Access hits hard, suggesting “an entirely different relationship between the apparatus of architecture and architects in their engagement with disabled people” (139). Using original site interpretation and archival research, what he means by “different” is an epistemological transformation of foundational architectural concepts. Gissen adopts the lens of impairment and techniques of defamiliarization to upend durable architectural beliefs and position disability critique at the heart of contemporary architectural and urban debates. This is not new—the work of Elizabeth Guffey, Sun-Young Park, David Serlin, to name a few, offer penetrating takes on how disability theory can expose hidden cultural values and systems. However, unlike these scholars’ focus on designs for disability, Gissen’s reinterpretations of places for the general public suggest a more holistic rewriting of architectural history. Also, where most disability critiques of architecture emerge from other fields such as geography or disability studies, The Architecture of Disability offers the field’s first broad, serious engagement with disability. That this is JAE’s first review of a book on disability confirms architecture’s lag in treating impairment as fundamental to design discourse.

Representing Disability in Tort Litigation: An Empirical Analysis of Judicial Discourse (1998–2018)

This study empirically examines whether and how the introduction of disability rights impacted the portrayal of disability in personal injury court decisions in Israel and offers a method for doing such research in other legal realms and contexts. We conducted a quantitative content analysis of Israeli district court judicial rulings over twenty years to measure whether a discursive shift occurred from a medical-individual view of disability to a social constructionist and a rights-based understanding of disability. Our coding system included descriptive and conceptual indicators, forming two indexes: a conventional index and a progressive index. Our findings reveal a steady dominance of the conventional discourse and a gradual yet limited rise in progressive discourse. Moreover, individual court decisions often manifest both types of discourse but are still dominated by a conventional view of disability and rarely apply direct disability rights terminology. These findings provide pioneering empirical evidence that substantiates the disability critique of tort law, demonstrating that judicial decision making is slow to adopt a disability rights perspective. More broadly, our findings show that the infusion of a disability rights orientation does not necessarily replace the older medical-individual view of disability but adds to it, resulting in a mixed discourse that includes both conventional and progressive elements.

An ethical analysis of clinical triage protocols and decision-making frameworks: what do the principles of justice, freedom, and a disability rights approach demand of us?

BackgroundThe expectation of pandemic-induced severe resource shortages has prompted authorities to draft and update frameworks to guide clinical decision-making and patient triage. While these documents differ in scope, they share a utilitarian focus on the maximization of benefit. This utilitarian view necessarily marginalizes certain groups, in particular individuals with increased medical needs.Main bodyHere, we posit that engagement with the disability critique demands that we broaden our understandings of justice and fairness in clinical decision-making and patient triage. We propose the capabilities theory, which recognizes that justice requires a range of positive capabilities/freedoms conducive to the achievement of meaningful life goals, as a means to do so. Informed by a disability rights critique of the clinical response to the pandemic, we offer direction for the construction of future clinical triage protocols which will avoid ableist biases by incorporating a broader apprehension of what it means to be human.ConclusionThe clinical pandemic response, codified across triage protocols, should embrace a form of justice which incorporates a vision of pluralistic human capabilities and a valuing of positive freedoms.

Disruption and Disability Futures inCaptain America: The First AvengerandCaptain America: The Winter Soldier

Marvel superhero movies celebrate the transformation of disabled people into weapons. First Avenger (2011) depicts a disabled man rebuilt by military technology into a patriotic superhero. In Winter Soldier (2014), the Soviet cyborg’s brutal, non-consensual modification serves to emphasize Captain America’s wholesomely perfected body. At first glance, both films seem incapable of critiquing the historical ableism that made Captain America’s modification a desirable image of disability-free future in 1941—let alone its modern manifestations. However, rewatching First Avenger after Winter Soldier reveals a far less stable endorsement of eliminating disability: alerted to the precise anxieties about bodily autonomy in the series, one can perceive an undercurrent of disability critique running through First Avenger too—often literally in the background. The film exposes the historical ableism that shaped Steve’s consent to modification, and begins to establish his sidekick Bucky Barnes as a persistent critical voice capable of envisioning a different disability future. The article is therefore not only about ableism in a pair of superhero movies but also about how these ableist films contain seeds of an unexpected critique of their own disability representation.

Understanding the Voices of Disability Advocates in Physician-Assisted Suicide Debates

Abstract Christians have an obligation to attend to the voices of persons who are crying out that their dignity and very lives are in jeopardy when physician-assisted suicide (PAS) becomes legalized. The following essay begins with an account of the concept of “disability moral psychology,” which elucidates the unique ways persons with disabilities perceive the world, based on their phenomenological experience. The author then explores the disability critique of PAS and the shared social conditions of persons who are chronically disabled and terminally ill. Finally, the author positions the disability critique within Christian moral deliberations on PAS to unearth its significance for Christian ethics. To bear witness to a compassionate God, theological and ethical judgments concerning PAS must seek perspectives from persons who claim that their dignity and even their lives are in jeopardy by the practice.

Subverting the Monster

Subverting the Monster

The Polymorphism of Necro-Being

In this paper, I examine the writings of African American philosopher Leonard Harris as an author who has been read primarily for his contributions to the study of Africana philosophy, U.S. pragmatism, and moral philosophy. Despite contributions to bioethics and reflections on systemic racism within the context of institutional medical settings, Harris’s work has yet to be read in terms of its relevance for disability critique. This paper demonstrates how Harris’s writings may be read as contributing to the field of philosophy of disability by arguing that his concept of “necro-being” helps reveal the mutually reinforcing relationships between race, disability, gender, and class. To carry this out, I consider core themes from his work such as metaphilosophy, health, and autonomy to show the relevance of his writings for philosophy of disability, and, in a parallel manner, the importance of disability critique for expanding his accounts of oppression and racism.

Reforming Informed Consent: On Disability and Genetic Counseling

Informed consent is a central concept for empirical and theoretical research concerning pregnancy management decisions and is often taken to be one of the more fundamental goals of the profession of genetic counseling. Tellingly, this concept has been seen by disability communities as salutary, despite longstanding critiques made by disability activists, advocates, and scholars concerning practices involved in genetic counseling more generally. In this chapter, we show that the widespread faith in informed consent is misleading and can be detrimental to the practice of genetic counseling as guided by concerns of justice and equity. We proceed in two steps. First, we explain how informed consent is flawed as a practical concept. Second, we show how the inadequacy of informed consent illuminates the animating core of disability critiques of genetic counseling: the issue of ableism. We argue that the problem of ableism cannot be solved with informed consent because it is not a problem of information, but of epistemic frameworks. We suggest that what we call critically informed consent is better suited to move genetic counseling from being aware of the problem of ableism to becoming actively anti-ableist.

Disability, Climate Change, and Environmental Violence: The Politics of Invisibility and the Horizon of Hope

This article brings disability theory and activism into conversation with environmental justice, a conversation that has often been stymied by a fundamental difference in approaching disability. Environmental justice movements position disability as a visceral marker of environmental harm, while disability movements claim disability as a site of value and vitality, a position I call "disability embrace." Rather than adjudicate these differences, I use them to pinpoint a barrier to political alliance: environmental disability is a consequence of structural violence. I argue that disability politics offer vital resources for grappling with climate change. Applying insights from disability studies and disability activism to the analysis of environmental damage reveals the political stakes of diagnosis—the way power contours how, when, and to what ends we recognize human and ecological impairment. Disability insights illuminate pervasive cultural patterns of invisibility and climate denial. Disability critiques of futurity and cure can also reconfigure the way we approach hope and help fashion a new narrative of what it might mean to live well in the Anthropocene.

Genetic testing and autism: Tutorial for communication sciences and disorders

This tutorial provides professionals in communication sciences and disorders with an overview of the molecular basis and parental perceptions of genetic testing as associated with autism. The introduction notes the prominence of genetic testing within present-day medical practices and highlights related limitations and concerns through the lens of disability critique. The body of the tutorial provides an overview of four different forms of genetic variation, highlighting the potential associations with autism and available genetic testing. In sum, most autism cases cannot be associated directly with specified forms of genetic variation but are attributed instead to multiple genetic and environmental influences working in concert. Finally, the discussion focuses on parental perceptions of the genetic testing associated with autism, both the potential benefits and harms, and emphasizes the need to integrate first-person perspectives from autistic individuals.

Selective Abortion as Moral Failure? Revaluation of the Feminist Case for Reproductive Rights in a Disability Context

Of feminism and disability theory's many overlapping concerns, few have received as much attention as prenatal genetic diagnosis and selective abortion. While the attention to how genetic selection reinforces disability stigma is important, much of this writing has failed to present the feminist case for the right to unrestricted abortion. This oversight has led to an articulation of the disability critique of selective abortion that threatens the very claims to reproductive freedom and bodily self-determination that undergird disability politics as well. This article rearticulates the feminist case for unrestricted reproductive rights in order to challenge the current framing of prenatal genetic diagnosis as an ethical failure and to present the opportunity to refigure reproductive rights as disability rights.

Imposing Genetic Diversity

The idea that a world in which everyone was born “perfect” would be a world in which something valuable was missing often comes up in debates about the ethics of technologies of prenatal testing and preimplantation genetic diagnosis (PGD). This thought plays an important role in the “disability critique” of prenatal testing. However, the idea that human genetic variation is an important good with significant benefits for society at large is also embraced by a wide range of figures writing in the bioethics literature, including some who are notoriously hostile to the idea that we should not select against disability. By developing a number of thought experiments wherein we are to contemplate increasing genetic diversity from a lower baseline in order to secure this value, I argue that this powerful intuition is more problematic than is generally recognized, especially where the price of diversity is the well-being of particular individuals.

Cripples, Bastards and Broken Things: Disability in <em>Game of Thrones</em>

Cripples, Bastards and Broken Things: Disability in <em>Game of Thrones</em>

Nurturing longevity: Sociological constructions of ageing, care and the body

This paper examines assumptions that surround the way that aged care and assistance is conceptualised and discussed. Problems with the concept of care became apparent with the critique of care theory by the disability movement in the 1980s and continue to this day. Debates arose initially between those who sought to identify care as a gender-based duty that serves to burden those who take responsibility for it, and those who reject the concept as a form of socially constructed dependency. The paper considers the problematic sociological foundations of this critique – the failure to incorporate an understanding of the body into much sociological theory and the significance that the conceptualisation has for understanding the need for personal assistance in advanced old age. While the disability critique of care is firmly grounded in a sociological analysis, it overemphasises the social construction of social relations and ignores the visceral reality of the body. Longevity care, in contrast, needs to explicitly acknowledge that ageing is an embodied and physical process that generates a need for care. The conclusions are tested against recent Australian data and research on care needs and preferences amongst older people.

A Disability Critique of the New Prenatal Test for Down Syndrome

This article presents evidence that the availability of a new noninvasive test for Down syndrome (known as "MaterniT21") could result in increased uptake of prenatal testing for Down syndrome and an increase in selective abortions of affected fetuses. I argue that people with Down syndrome and those sympathetic to them have reason to object to these developments because bias against cognitive disability is an influence on decisions to test and terminate for Down syndrome, and social practices motivated by bias are objectionable. The article addresses many of the challenges to the disability critique formulated by its detractors. I discuss whether the disability critique is the same as the "expressivist" objection to prenatal testing, the nature of the harm experienced by people with Down syndrome, and the link between prenatal testing and this harm.

Justice Between Age Groups: An Objection to the Prudential Lifespan Approach

Societal aging raises challenging ethical questions regarding the just distribution of health care between young and old. This article considers a proposal for age-based rationing of health care, which is based on the prudential life span account of justice between age groups. While important objections have been raised against the prudential life span account, it continues to dominate scholarly debates. This article introduces a new objection, one that develops out of the well-established disability critique of social contract theories. I show the implications of this critique for the prudential life span account and for the special case of age-group justice. The result is that age-based rationing based on the prudential life span approach is not supported, and that the prudential life span approach itself is not the best way to think about allocating health care between age groups. I propose an alternative approach that avoids the disability objection, and consider its implications for specific proposals for age-based rationing of health care.

Reconciling the disability critique and reproductive liberty: The case of negative genetic selection

The disability critique of negative genetic selection is frequently accused of threatening reproductive liberty. This paper describes the disability critique and defends it against that objection. It also contends that the critique can work to deflate belief in genetic determinism. Recognizing the influence of genetic determinism helps advocate for existing persons in the disability community and protects reproductive liberty. The disability critique can point to genetic determinism but does not suggest a ban or obstacles to the choice of negative genetic selection; therefore, it is not antithetical to reproductive liberty, as has been charged.

Reconciling the disability critique and reproductive liberty: The case of negative genetic selection

Reconciling the disability critique and reproductive liberty: The case of negative genetic selection