In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment (...) to both distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19. (shrink)

This contribution explores disability rights protection in Inter-American States within the framework of the OAS and in the context of the obligations established under the CIADDIS and the CRPD. Following the classical division between ‘primary’ and ‘secondary’ rules, the contribution first sketches key regulatory initiatives in the area of disability rights and second considers compliance and enforcement mechanisms. Along these lines, the first section illustrates similarities and differences between the CIADDIS and the CRPD and, within this (...) framework, essential regional regulatory initiatives. The second section assesses disability rights in select countries, based on periodic reports under the CIADDIS and CRPD. The section examines the four largest countries by population in the region, notably, the United States of America (US), Mexico, Brazil and Colombia. The third section explores the enforcement of disability rights via key cases before the Inter-American Commission on Human Rights (IAComHR) and the Inter-American Court of Human Rights (IACtHR). The purpose is providing a comprehensive understanding of disability rights in the region and identifying key regulatory problems and ways forward. (shrink)

I argue against Appel's recent proposal – in this JOURNAL – that there is a fundamental human right to sexual pleasure, and that therefore the sexual pleasure of severely disabled people should be publicly funded – by thereby partially legalizing prostitution. I propose an alternative that does not need to pose a new positive human right; does not need public funding; does not need the legalization of prostitution; and that would offer a better experience to the severely disabled: charitable non-profit (...) organizations whose members would voluntarily and freely provide sexual pleasure to the severely disabled. (shrink)

In response to three papers about sex and disability published in this journal, I offer a critique of existing arguments and a suggestion about how the debate should be reframed going forward. Jacob M. Appel argues that disabled individuals have a right to sex and should receive a special exemption to the general prohibition of prostitution. Ezio Di Nucci and Frej Klem Thomsen separately argue contra Appel that an appeal to sex rights cannot justify such an exemption. I (...) argue that Appel’s argument fails, but not for the reasons Di Nucci and Thomsen propose, as they have missed the most pressing objection to Appel’s argument: Appel falsely presumes that we never have good reasons to restrict someone’s sexual liberty rights. More importantly, there is a major flaw in the way that all three authors frame their positive accounts. They focus on disability as a proxy for sexual exclusion, when these categories should be pulled apart: some are sexually excluded who are not disabled, while some who are disabled are not sexually excluded. I conclude that it would be less socially harmful and more productive to focus directly on sexual exclusion per se rather than on disability as a proxy for sexual exclusion. (shrink)

I argue that the right to sexual satisfaction of severely physically and mentally disabled people and elderly people who suffer from neurodegenerative diseases can be fulfilled by deploying sex robots; this would enable us to satisfy the sexual needs of many who cannot provide for their own sexual satisfaction; without at the same time violating anybody’s right to sexual self-determination. I don’t offer a full-blown moral justification of deploying sex robots in such cases, as not all morally relevant concerns can (...) be addressed here; rather, I put forward a plausible way of fulfilling acute sexual needs without thereby violating anybody’s sexual rights. (shrink)

Disability laws are crucial in ensuring a life of dignity for persons with disabilities. However, they remain limited and ineffective in the absence of adequate knowledge and awareness of the experiences with disability. The limitedness of disability laws has been spoken of in cases where the full realization of rights is subject to technological, philosophical, and market dynamics. In many cases, the law is also weakened by negative cultural beliefs and social perceptions of disability. And (...) then there are cases where disability laws perpetuate or tolerate oppression and violence. Despite their limitedness, disability laws offer normative content to facilitate engagement and critique for reform. In terms of what disability laws ‘ought’ to be, scholars write, that they should be about disabled people and the meanings provided by them. This objective has and can be fulfilled with the aid of disability studies that go beyond the inquiries of law with the right kind of research tools to theorize and re-theorize concepts and meanings about disability. Disability studies, in other words, represent the living conditions of disabled persons and the questions of how disability and/or impairment should be defined. This chapter examines the interaction between disability law and disability studies through the prism of the Convention on the Rights of Persons with Disabilities (CRPD). While discussing the models of disability (medical, social, human rights, and relational-community models) and agendas for reforming the CRPD, the chapter highlights the importance of new concepts and approaches. Further, the potential of disability laws, CRPD in particular, has been discussed keeping in mind the application of its core principles across different sectors (with a special focus on the Marrakesh treaty and copyright laws). (shrink)

It is widely accepted among medical ethicists that competence is a necessary condition for informed consent. In this view, if a patient is incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient. We call this the competence model. According to a recent report of the United Nations (UN) High Commissioner for Human Rights, article 12 of the UN Convention on the (...) class='Hi'>Rights of Persons with Disabilities (CRPD) presents a wholesale rejection of the competence model. The High Commissioner here adopts the interpretation of article 12 proposed by the Committee on the Rights of Persons with Disabilities. On this interpretation, CRPD article 12 renders it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired decision-making capacity and demands the replacement of all regimes of substitute decision-making by supported decision-making. In this paper, we explicate six adverse consequences of CRPD article 12 for persons with mental disabilities and propose an alternative way forward. The proposed model combines the strengths of the competence model and supported decision-making. (shrink)

What is it for something to be a disability? Elizabeth Barnes, focusing on physical disabilities, argues that disability is a social category. It depends on the rules undergirding the judgements of the disability rights movement. Barnes’ account may strike many as implausible. I articulate the unease, in the form of three worries about Barnes’ account. It does not fully explain why the disability rights movement is constituted in such a way that it only picks (...) out paradigmatic disability traits, nor why only the traits identified by the movement as constituting experiences of social and political constraint count as disability. It also leaves out the contribution of people other than disability activists, to the definition of disability. I develop Barnes’ account. On my account, a person is disabled if she is in some state which is constitutive of some constraint on her legitimate interests. This state must be the subject of legitimate medical interest and be picked out by the disability rights movement as among the traits for which they are seeking to promote progress and change. My account addresses the worries about Barnes’ account. It is also able to include all disabilities, rather than only physical ones. (shrink)

This essay seeks to acknowledge the unsettling reality of children being intentionally maimed towards disability and disfigurement as economic commodity. The issue is easily invisibilized in modern education, and understandably so: the trauma triggered by these bloody realities can automatically disqualify the content for formal in school education as a form of “unwelcome truth”. Freire and Fanon, however, did not shy away from the horrific state of life for the oppressed and the wretched in their consideration of pedagogy. The (...) lived experience of maimed children is tragic, but it is lived experience nonetheless – acknowledged by hooks as “a way of knowing that coexists in a non-hierarchical way with other ways of knowing” (2014). In other words, this knowledge exists but is arguably not mobilized by society towards action. Critical consciousness, upheld by Freire as the key to seeing inequality to act upon it, is a goal beyond reach for the maimed children themselves. Here, we consider the extension proposed by Nicholls (2011), who discusses pedagogy of the privileged as an equally important parallel towards collaborative action against long-standing inequalities. In the context of these children having minimal access to education, we contend that privileged students must be the ones to carry forth the knowledge towards their own critical consciousness. Specifically, we explore what acknowledging children who are maimed could offer towards pedagogy, in relation to helping students to 1) minimize the act of “othering” in a global community; 2) reconsider the role of mass-media and media literacy in their critical consciousness; and 3) move away from surface-level, performative charity against societal inequalities. (shrink)

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is being used to argue for wider recognition of the legal capacity of people with mental disabilities. This raises a question about the implications of the Convention for attributions of criminal responsibility. The present paper works towards an answer by analysing the relationship between legal capacity in relation to personal decisions and criminal acts. Its central argument is that because moral and political considerations play an essential role (...) in setting the relevant standards, legal capacity in the context of personal decisions and criminal acts should not be thought of as two sides of the same coin. The implications of particular moral or political norms are likely to be different in these two legal contexts, and this may justify asymmetries in the relevant standards for legal capacity. However, the analysis highlights a fundamental question about how much weight moral or political considerations should be given in setting these standards, and this is used to frame a challenge to those calling for significantly wider recognition of the legal capacity of people with mental disabilities on the basis of the Convention. (shrink)

Criminalisation of prostitution, and minority rights for disabled persons, are important contemporary political issues. The article examines their intersection by analysing the conditions and arguments for making a legal exception for disabled persons to a general prohibition against purchasing sexual services. It explores the badness of prostitution, focusing on and discussing the argument that prostitution harms prostitutes, considers forms of regulation and the arguments for and against with emphasis on a liberty-based objection to prohibition, and finally presents and analyses (...) three arguments for a legal exception, based on sexual rights, beneficence, and luck egalitarianism, respectively. It concludes that although the general case for and against criminalisation is complicated there is a good case for a legal exception. (shrink)

The issue of whether biological and psychological properties associated with disability can be harmful, beneficial, or neutral brings up an important philosophical question about how we evaluate disability, and disability’s impact on well-being. The debate is usually characterized as between those who argue disability is intrinsically harmful, and disability rights advocates who argue that disability is just another way of being different, in part, because disability can also provide important benefits. I argue (...) that this debate is a false one, as neither view can capture the more complicated relationship between disability and well-being. I argue that many disabilities are best understood as a kind of pro-tanto extrinsic harm that is characterized in counterfactual terms. This means that our judgments concerning disability and harm must be context-sensitive. (shrink)

If we were to write down all those things that we ordinarily categorise as disabilities, the resulting list might appear to be extremely heterogeneous. What do disabilities have in common? In this paper I defend the view that disabilities should be understood as particular kinds of inability. I show how we should formulate this view, and in the process defend the view from various objections. For example, I show how the view can allow that common kinds of inability are not (...) disabilities, can allow that minor kinds of inability are rightly not described as disabilities, and can allow that socially imposed inabilities need not be disabilities. In the second half of the paper, I show that this theory is superior to rival theories. I criticize the wellbeing theory of disability (Kahane and Savulescu 2009, Savulescu and Kahane 2011, Harris 2001) and conventionalist theories of disability (e.g. Barnes 2016). Finally, I show how the inability theory is consistent with the best versions of the social model of disability. (shrink)

This brief monograph was written in an attempt to discover the general situation of Disability Studies, given that this appears to have become a growth area in academia with various typically illiberal aspects. The findings bear out the initial impression. There is a style of argument, even propaganda (for there is usually little genuine engagement with opposing liberal views), that can be seen in many other areas of academia. It amounts to a relatively new ‘progressive’ industry with various fashionable (...) keywords, phrases and ideologies—often not obviously related to disabilities in any serious way—indicating the nature of the beast: ‘progressive’, ‘radical’, ‘oppression’, ‘bourgeois’, ‘empowerment’, ‘rights’, ‘equal opportunities’, ‘discrimination’, ‘prejudice’, ‘citizenship’, ‘social justice’, ‘socially constructed’, ‘Marxism’, ‘Post Modernism’ and ‘Feminism’. The overall picture is that disability has become increasingly politicised along politically correct lines to the detriment of society as a whole and, eventually, even to the disabled themselves. This is largely caused by the endemic trahison des clercs in our tax-consuming and coercively monopolised university system. (shrink)

Feelings of marginalisation impact the lives of LGBT+ people in a fundamental way, but for those who have an intellectual disability, and are gay, there is a heightened sense of alienation. This article examines the unique oppression faced by these individuals in a heteronormative and ableist world, where a long history of extreme control of sexual intimacy has resulted in harsh forms of social exclusion. Although moves have been made to empower service users who are intellectually disabled and identify (...) as LGBT+ to participate fully in life, there is also a need to assess the relationship between rights, responsibility, and risk. This article further explores whether by drawing upon government social policy, barriers are being dismantled through the development of innovative local strategies that aim to deliver non-discriminatory person-centred services. (shrink)

Selection against embryos that are predisposed to develop disabilities is one of the less controversial uses of embryo selection technologies. Many bio-conservatives argue that while the use of ESTs to select for non-disease-related traits, such as height and eye-colour, should be banned, their use to avoid disease and disability should be permitted. Nevertheless, there remains significant opposition, particularly from the disability rights movement, to the use of ESTs to select against disability. In this article we examine (...) whether and why the state could be justified in restricting the use of ESTs to select against disability. We first outline the challenge posed by proponents of ‘liberal eugenics’. Liberal eugenicists challenge those who defend restrictions on the use of ESTs to show why the use of these technologies would create a harm of the type and magnitude required to justify coercive measures. We argue that this challenge could be met by adverting to the risk of harms to future persons that would result from a loss of certain forms of cognitive diversity. We suggest that this risk establishes a pro tanto case for restricting selection against some disabilities, including dyslexia and Asperger's syndrome. (shrink)

This article introduces a new formulation of the interest theory of rights. The focus is on ‘Bentham’s test’, which was devised by Matthew Kramer to limit the expansiveness of the interest theory. According to the test, a party holds a right correlative to a duty only if that party stands to undergo a development that is typically detrimental if the duty is breached. The article shows how the entire interest theory can be reformulated in terms of the test. The (...) article then focuses on a further strength of the interest theory, brought to the fore by the new formulation. In any Western legal system, the tortious maltreatment of a child or a mentally disabled individual results in a compensatory duty. The interest theory can account for such duties in a simple and elegant way. The will theory, on the other hand, struggles to explain such compensatory duties unless it abandons some of its main tenets. (shrink)

Marilyn Adams rightly pointed out that there are many kinds of evil, some of which are horrendous. I claim that one species of horrendous evil is what I call horrendous-difference disabilities. I distinguish two subspecies of horrendous-difference disabilities based in part on the temporal relation between one’s rational moral wishing for a certain human function F and its being thwarted by intrinsic and extrinsic conditions. Next, I offer a theodicy for each subspecies of horrendous-difference disability. Although I appeal to (...) some claims made by Marilyn Adams for this theodicy, I reject one particular claim. I deny that one must be aware that one participates in a horrendous evil when the horrific event occurs. To develop this point and its relevance for a theodicy for horrendous-difference disabilities, I engage with Andrew Chignell’s work on infant suffering. In doing so, I show that what partly motivates the claim is a time-bias, i.e., near-bias. By rejecting this time-bias, I show how it is possible, given post-mortem life, for persons with profound cognitive disabilities to participate in horrendous evils and how these might be defeated by God. (shrink)

How have and how might philosophers contribute to linking disability and activism in these peri-COVID-19 times, especially in forms of public engagement that go beyond podcasted talks and articles aimed at a public audience? How do we harness philosophical thinking to contribute positively to those living with disability whose vulnerabilities are heightened by this pandemic and the ableism highlighted by collective responses to it?

A crucial question in relation to support designed to enable the legal capacity of people with mental disabilities concerns when support constitutes undue influence. This article addresses this question in order to facilitate the development of law and policy in England and Wales, by providing a normative analysis of the different approaches to undue influence across decisions about property, contracts, health, finances, and accommodation. These are all potential contexts for supporting legal capacity, and, in doing so, the article compares approaches (...) to undue influence that are rarely considered together. -/- Drawing on the UN Convention on the Rights of Persons with Disabilities, third sector and public body documents, and law in England and Wales, the analysis identifies six models that conceptualise undue influence in terms of: modes of influence; an overborne will; an inference from the situation; an overborne will understood as a mental incapacity; an overborne will in connection with vulnerability; and impaired discursive control. This final approach is a novel proposal for understanding undue influence. The analysis highlights key policy-relevant issues that distinguish the models, and generates a deliberative framework for navigating them, with the ‘overborne will’, ‘inference-based’, and ‘discursive control’ models identified as potentially fitting for the support context. (shrink)

A. Klimczuk, Book review: A. Rimmerman, "Social Inclusion of People with Disabilities: National and International Perspectives", New York: Cambridge University Press, 2013, "Human Rights Review" Vol. 16, Iss. 4 2015, pp. 397-399.

Mental health is a global priority, and states and stakeholders are taking steps toward advancing a human right to mental health for all (APA, 2018). This is evidenced by international studies, initiatives, declarations, and domestic policy interventions. From a right-based perspective, mental health is not the mere absence of a psychiatric condition or psychosocial disability (WHO, 2022). It speaks of an environment in which individuals live a life of dignity. The application of human rights principles to mental health (...) allows us to incorporate novel ideas about the role of all stakeholders in fostering the security, freedom, justice, and dignity of individuals. With this point of view in mind, many states are revisiting their mental health laws and governance practices. (shrink)

In this paper, I analyze the ethical implications of genetic enhancement within the specific framework of the “child’s right to an open future” argument (CROF). Whilst there is a broad ethical consensus that genetic modifications for eradicating diseases or disabilities are in line with – or do not violate – CROF, there is huge disagreement about how to ethically understand genetic enhancement. Here, I analyze this disagreement and I provide a revised formulation of the argument in the specific field of (...) genetic enhancement. First, I argue that CROF is not in contrast with every kind of enhancement. I subsequently discuss whether CROF requires some moral obligations to enhance progeny. My argument is that parents do not have the moral obligation to open as many options as possible for their children. Rather, they should provide them with a reasonable range of opportunities. Finally, I contend that the moral obligations required by CROF are directly dependent on what Allen Buchanan calls the ‘dominant cooperative framework’ in a given society. I conclude by claiming that, at present, parents are not morally obliged to genetically enhance their children since a non-enhanced person already might have access to a reasonable range of opportunities. However, the moral obligation to enhance progeny might arise if a structural modification of the dominant cooperative framework occurs. (shrink)

Confronting persistent and widening inequality in educational opportunity, advocates have regarded the right to education as a linchpin for reform. In the forty years since the Supreme Court relegated that right to the domain of state constitutional law, its power has surged and faded in litigation challenging state school finance systems. Like so many of the students it is meant to protect, however, the right to education has generally underachieved, in part because those wielding it have not always appreciated its (...) distinctive forms and function. Deconstructed, the right to education held by children has been formulated doctrinally as both a claim-right, imposing affirmative duties on the state to act, and an immunity, disabling certain state action. These two strands—oft-manifested as the claim-right to educational “adequacy” and an immunity entailing “equality” of educational opportunity—once considered irreconcilable, are actually interlocked by the right’s core historical function to protect children’s liberty and equality interests. And yet the right to education is ill equipped to fulfill its protection function. Education clauses in state constitutions do not fix the standards for mutually enforcing equality and adequacy. This encumbers already-reluctant courts in addressing educational disparities and emboldens legislative resistance when they do. Appreciating that the right to education has a protection function entailing equality and liberty interests nevertheless suggests that the right can be adjudicated in a way that unifies the demands and guarantees of substantive due process and equal protection. That union holds the potential to ameliorate the enforcement standards thereby reconstituting the right to education as a mainstay of reform. (shrink)

Perhaps the biggest disconnect between philosophers and non-philosophers on the question of gun rights is over the relevance of arms to our dignitary interests. This essay attempts to address this gap by arguing that we have a strong prima facie moral right to resist with dignity and that violence is sometimes our most or only dignified method of resistance. Thus, we have a strong prima facie right to guns when they are necessary often enough for effective dignified resistance. This (...) approach is distinctively non-libertarian: it doesn’t justify gun rights on the basis of (mere) liberty or security. Nonetheless it is compatible with libertarian defenses of gun rights based on a liberty right to guns, and, if sound, in fact lowers the bar for gun rights in some ways, as it justifies access to guns even when nonviolent means would better achieve the liberty or security aims of potential victims. And although this defense of gun rights is most readily categorized as “conservative” or rightist, it relies upon principles and intuitions about dignity popular among progressives in other domains, such as in disability, women’s, or LGBT rights debates. (shrink)

For Martin, the right to free higher education may be claimed only by those ready and willing pursue autonomy supporting higher education. The unready and unwilling, among whom may be counted carers, disabled, and devout, are excluded. This is unjust. I argue that this injustice follows from a tension between three elements of Martin’s argument: (1) a universal right to autonomy supporting higher education; (2) qualifications on entitlements to access this right in order to preserve the value of higher educational (...) goods; (3) luck egalitarian motivations in Martin’s distributive ethics. I consider options for avoiding such injustices and their implications for Martin’s argument. (shrink)

That Kant’s moral thought is invoked by both advocates and opponents of a right to assisted dying attests to both the allure and and the elusiveness of Kant’s moral thought. In particular, the theses that individuals have a right to a ‘death with dignity’ and that assisting someone to die contravenes her dignity appear to gesture at one of Kant’s signature moral notions, dignity. The purposes of this article are to outline Kant’s understanding of dignity and its implications for the (...) ethics of assisted dying. According to Kant, that which has dignity must be treated as an end in itself and may not permissibly be exchanged for that which merely has price. Kant’s reasoning thus seems to preclude acts of self-killing, including voluntary assisted dying, that rest on individual self-interest, since a person’s interests merely have price. However, a recognizably Kantian view of dignity can permit assisted dying under two sets of circumstances: First, it can be permissible for agents who anticipate a degradation of their rational agency due to conditions such as dementia to direct others to end their lives once sufficiently demented. In so doing, such agents in effect exercise a right to impose obligations on others regarding how their bodies, which will at some future point no longer be the vessels of their rational agency, are to be disposed of. Second, Kant errs in supposing that our dignity can stem solely from our moral personality, i.e., from our capacity to abide by universalizable moral principles. Rather, complete dignity also requires the capacity for setting discretionary ends and the means to those ends, i.e., the dignity of humanity. Individuals with prolonged and intense depression, in severe pain, or with serious disability may lack humanity while retaining their moral personality. In such cases, I propose that their opting to end their lives, with or without the assistance of others, does not amount to exchanging their dignified selves for something which merely has price and is therefore not objectionable on Kantian grounds. (shrink)

Summary Background Self-binding directives instruct clinicians to overrule treatment refusal during future severe episodes of illness. These directives are promoted as having potential to increase autonomy for individuals with severe episodic mental illness. Although lived experience is central to their creation, service users’ views on self-binding directives have not been investigated substantially. This study aimed to explore whether reasons for endorsement, ambivalence, or rejection given by service users with bipolar disorder can address concerns regarding self-binding directives, decision-making capacity, and human (...) rights. Methods This study used qualitative data from an internet-based survey distributed to the mailing list of the UK charity Bipolar UK, which contained multiple closed and open questions on advance decision-making in bipolar disorder. Quantitative analysis of a closed question about self-binding directives had already demonstrated endorsement amongst a very high proportion of participants with bipolar disorder who completed the survey. We conducted thematic analysis of responses from those participants who answered a subsequent open question about reasons for their view. Research was co-produced within a multi-disciplinary team, with clinical, legal, and ethical expertise, and lived experience of bipolar disorder. Ideas and methodologies associated with all these areas of expertise were used in the analysis of these reasons and to gain insight into the thoughts of individuals with bipolar disorder about self-binding directives and associated issues. Findings Between Oct 23 and Dec 5, 2017, 932 individuals with a self-reported clinical diagnosis of bipolar disorder completed the internet survey, with 565 (154 men; 400 women; 11 transgender or other) providing free text answers to the open question. A large majority of respondents endorsed self-binding directives, nearly all describing a determinate shift to types of distorted thinking and decision-making when unwell as their key justification. Responses indicating ambivalence were dominated by logistical concerns about the drafting and implementation of self-binding directives, while those who rejected self-binding directives also cited logistical concerns, validity of their thinking when unwell, and potential contravention of human rights. Interpretation This study is, to our knowledge, the first large study of reasons why mental health service users might endorse or reject the use of self-binding directives. The findings provide empirical support for introducing self-binding directives into mental health advance decision-making practice and policy and may help to address enduring ethical concerns surrounding possible implementation of the directive while a person retains decision-making capacity. The opinions expressed here in responses given by multiple service users with bipolar disorder challenge a prominent view within international disability rights debates that involuntary treatment and recognition of impaired mental capacity constitute inherent human rights violations. Funding The Wellcome Trust . (shrink)

In this chapter, I describe my “post-diagnosis” experiences as the parent of an autistic child, those years in which I tried, but failed, to make sense of the overwhelming and often nonsensical information I received about autism. I argue that immediately after being given an autism diagnosis, parents are pressured into making what amounts to a life-long commitment to a therapy program that (they are told) will not only dramatically change their child, but their family’s financial situation and even their (...) entire mode of existence. Moreover, despite information overload, many treatment programs for autism rely on empty jargon and make completely unrealistic promises, so parents are left feeling overwhelmed and panicked. Even well respected therapy programs encourage parents to spend liberally. Indeed, autistic therapists, who help construct what I refer to as the Culture of Autism, advise parents to commit to a minimum of 35 to 45 hours of intensive therapy every week. The implications are clear: for a parent who works full-time, their autistic child becomes a second full-time job. Autism is big business right now, and therapists are pushing parents to the brink of desperation. So it is not too surprising that there is a desperate cry for a more permanent solution—which is why researchers seek to cure autism. But there are two ways to conceptualize cure. A Therapeutic Cure model (TC) conceives of a cure as a beneficial treatment for the patient that eliminates or ameliorates the harms of the disease or condition. But the notion of a therapeutic cure for autism is highly implausible, given the complexities of autism. Indeed, at this point, the vast majority of researchers have come to the conclusion that the idea of a therapeutic cure for autism is simply a non-starter. Therefore the bulk of research seeking a cure for autism focuses instead on a second approach, which I refer to as the Negative Eugenics Cure model (NEC). With this model, the intention is to eliminate the disease or condition without regard for the health or well-being of the organism carrying the disease or condition. So, with regard to autism, researchers are focusing on identifying genetic markers for autism that can be detected in utero, or in embryos, so that autistic fetuses can be eliminated and autism eradicated by preventing the existence of autistic individuals. I review both models and argue that both fail to provide convincing arguments that the “solution” either offers is desirable. Both rest on the assumption that autism renders a life not worth living which, all things considered, is false. Instead of pushing to cure autism, an idea pervasive in this Culture of Autism, I contend that autistics are individuals with lives worth living. Moreover, rather than expend millions on research to search for the means to eliminate autism, we should instead expend our resources to ensure autistic individuals have access to support they may need. If the phenomenology of autism were better understood and appreciated, the panicked demand for a cure for autism might abate and perhaps autism could be seen as having value in and of its own right. (shrink)

A central question in contemporary ethics and political philosophy concerns which entities have moral status. In this article, I provide a detailed analysis of the view that moral status comes in degrees. I argue that degrees of moral status can be specified along two dimensions: (i) the weight of the reason to protect an entity’s morally significant rights and interests; and/or (ii) the rights and interests that are considered morally significant. And I explore some of the complexities that (...) arise when we link degrees of moral status to the weight of reasons to protect bundles and/or the content and size of these bundles, in particular regarding the attribution of moral status to nonparadigmatic entities (e.g. people with severe cognitive disabilities, children, embryos and foetuses, robots, non-human animals, ecosystems, and rivers). (shrink)

The morality of abortion is a longstanding controversy. One may wonder whether it’s even possible to make significant progress on an issue over which so much ink has already been split and there is such polarizing disagreement (Boyle 1994). The papers in this issue show that this progress is possible—there is more to be said about abortion and other crucial beginning-of-life issues. They do so largely by applying contemporary philosophical tools to moral questions involving life’s beginning. The first two papers (...) defend the pro-life view from recent objections involving miscarriage and abortion doctors. The third shows how the social model of disability and the concept of transformative experience applies to classic debates like abortion and euthanasia. The final two papers address how rights and harms apply to children and to beings that do not yet exist. All five papers make a noteworthy contribution to the moral issues that arise at the beginning of life. (shrink)

The COVID-19 (Coronavirus disease of 2019) pandemic has led to intense conversations about ventilator allocation and reallocation during a crisis standard of care. Multiple voices in the media and multiple state guidelines mention reallocation as a possibility. Drawing upon a range of neuroscientific, phenomenological, ethical, and sociopolitical considerations, the authors argue that taking away someone’s personal ventilator is a direct assault on their bodily and social integrity. They conclude that personal ventilators should not be part of reallocation pools and that (...) triage protocols should be immediately clarified to explicitly state that personal ventilators will be protected in all cases. (shrink)

In this chapter, our focus is the role played by notions of rationality in the diagnosis of mental disorders, and in the practice of overriding patient autonomy in psychiatry. We describe and evaluate different hypotheses concerning the relationship between rationality and diagnosis, raising questions about what features underpin psychiatric categories. These questions reinforce widely held concerns about the use of diagnosis as a justification for overriding autonomy, which have motivated a shift to mental incapacity as an alternative justification. However, this (...) approach too has recently been criticized from a mental disability rights perspective. Our analysis of the relationship between mental capacity and rationality is used to illuminate these concerns, and to investigate further the relationship between rationality and psychiatric diagnosis. (shrink)

If one can judge a society by how it treats its prisoners, one can surely judge a society by how it treats cognitively- and learning-impaired children. In the United States children with physical and cognitive impairments are subjected to higher rates of corporal punishment than are non-disabled children. Children with disabilities make up just over 13% of the student population in the U.S. yet make up over 18% of those children who receive corporal punishment. Autistic children are among the most (...) likely to receive corporal punishment. -/- Although they may deny or redescribe particular instances of corporal punishment or their use of restraints, educators defend such actions as legitimate punishment. In this paper, I assess the logic underlying the use of restraints and corporal punishment on autistic children by educators. The rationalizations for the corporal punishment or restraint of autistics stems from the educator’s desire to control the autistic children so as to end typical autistic behaviors such as rocking, repetitive verbalizations, or “flapping” but also the autistic child’s non-affective responses such as not appearing to feel remorse or shame or the absence of a verbal acknowledgement of remorse or shame. The educators assume that the autistic’s failure to exhibit the desired responses is evidence of the autistic’s moral incorrigibility and is, therefore, evidence of the appropriateness of corporal punishment. But this assumption of the incorrigibility of the autistic child is questionable. -/- Indeed accepting this incorrigibility assumption reveals two important problems. First, instructors using physical punishment on autistic children do not understand autism. Second, they are not working with a tenable conception of punishment. Any action undertaken to induce socially acceptable behaviors (whether it be the end of autistic acts or responses such as remorse) is to fail to understand what the legitimate punishment of children is about. (shrink)

The idea of dignity is pervasive in political discourse. It is central to human rights theory and practice, and it features regularly in conceptions of social justice as well as in the social movements they seek to understand or orient. However, dignity talk has been criticized for leading to problematic exclusion. Critics challenge it for undermining our recognition of the rights of non-human animals and of many human individuals (such as children, the elderly, and people with disabilities). I (...) argue that, on a plausible articulation of it, the idea of dignity does not lead to these exclusions and that it in fact helps defend an appropriately inclusive moral and political treatment of all individuals. Difficult issues about equality and diversity indeed arise, but a dignitarian approach can provide good answers to them or at least help make them clearer and more tractable. (shrink)

Jeremy Williams has argued that if we are committed to a liberal pro-choice stance with regard to selective abortion for disability, we will be unable to justify the prohibition of sex selective abortion. Here, I apply his reasoning to selective abortion based on other traits pregnant women may decide are undesirable. These include susceptibility to disease, level of intelligence, physical appearance, sexual orientation, religious belief and criminality—in fact any traits attributable to some degree to a genetic component. Firstly, I (...) review Williams’ argument, which claims that if a woman is granted the right to abort based on fetal impairment, then by parity of reasoning she should also be granted the right to choose sex selective abortion. I show that these same considerations that entail the permissibility of sex selective abortion are also applicable to genetic selection abortion. I then examine the objections to sex selective abortion that Williams considers and rejects, and show that they also lack force against genetic selection abortion. Finally, I consider some additional objections that might be raised, and conclude that a liberal pro-choice stance on selective abortion for disability entails the permissibility of selective abortion for most genetic traits. (shrink)

In this open peer commentary, we concur with the three target articles’ analysis and positions on abortion in the special issue on Roe v. Wade as the exercise of reproductive liberty essential for the bioethical commitment to patient autonomy and self-determination. Our proposed OPC augments that analysis by explicating more fully the concept crucial to Roe of fetal personhood. We explain that the development and use of predictive reproductive technologies over the fifty years since Roe has changed the literal image, (...) and thereby the epistemological landscape, through which a prospective parent comes to know the fetus. The logic of Roe required a legal and ethical denial of fetal personhood to prioritize maternal autonomy over claims to fetal moral personhood. Our claim is that such a denial may be more complicated today. The fetal person genetic testing and reproductive imaging now presents to prospective parents has become an increasingly individualized, distinct medicalized picture of a developing person with which a parent can either identify or differentiate. In contrast, the fetal person of Roe was an abstract and vague figure stripped of most human particulars, a pregnancy rather than the specific individualized human entity reproductive technology now presents as a person to prospective parents. We discuss the implications of this shift and call for a more capacious analysis of reproductive ethics that works towards both reproductive and disability justice. (shrink)

One way to determine whether a mental condition should be considered a disorder is to first give necessary and sufficient conditions for something to be a disorder and then see if it meets these conditions. But this approach has been criticized for begging normative questions. Concerning autism (and other conditions), a neurodiversity movement has arisen with essentially two aims: (1) advocate for the rights and interests of individuals with autism, and (2) de-pathologize autism. We argue that denying autism’s disorder (...) status could undermine autism’s exculpatory role in cases where individuals with autism are charged with a crime. Our argument raises a dilemma for the neurodiversity movement: advocating for the rights and interests of individuals with autism may require viewing autism as a condition that can be inherently disabling (at least for some individuals). If this is right, autism’s disorder status might be maintained (again, at least for some individuals) without deriving this result from any general account of disorder. (shrink)

Concebir los derechos como una protección no-paternalista de los intereses de sus titulares supone aceptar que su aspecto más relevante consiste en la provisión de una competencia para renunciar o consentir su inobservancia por terceros, lo cual no tiene por qué coincidir con la mejor estimación de sus intereses, aun cuando estos últimos juegan un papel importante en la justificación de las posiciones jurídicas implicadas. A partir de la tesis de la correlatividad, los conceptos jurídicos fundamentales de W.N. Hohfeld y (...) una tesis de la combinación que armoniza los elementos de la voluntad e interés en la explicación de los derechos, en el presente artículo se tratará de mostrar por qué afirmar el carácter inalienable de los derechos contradice la función que estos desempeñan en los ordenamientos jurídicos modernos. // The understanding of rights as non-paternalistic protections of its holder’s concerns entails that the most important aspect of them is the provision of a power either to waive or to consent their encroachment by others, which does not necessarily coincide with the best appraisal of his/her interests, even when they play an important role in the justification of the subjective legal positions. From the correlativity thesis, the fundamental legal conceptions devised by W.N. Hohfeld and a combination thesis that merges the elements of will and interest in the explanation of rights, I will try to show why to stand up for the inalienable character of rights contradicts the function they perform in modern legal systems. (shrink)

Ethical extensionism is a common argument pattern in environmental and animal ethics, which takes a morally valuable trait already recognized in us and argues that we should recognize that value in other entities such as nonhuman animals. I exposit ethical extensionism’s core argument, argue for its validity and soundness, and trace its history to 18th century progressivist calls to expand the moral community and legal franchise. However, ethical extensionism has its critics. The bulk of the paper responds to recent criticisms, (...) including (1) environmental ethicists’ objection against its austere conception of moral value (2), feminist ethicists’ claim that extensionism fails to account for the moral significance of difference, (3) disability theorists’ concern that ethical extensionist arguments are offensive, and (4) animal rights theorists’ lament that extensionism is a practical failure. While something is to be gained from each criticism, I argue that they ultimately fail and that extensionism remains compelling. (shrink)

This paper considers imagination a performative expression using an ethico-aesthetic paradigm. Using William James’ notion of “medical materialism” as a critical tool, I turn to the work of autistic poet Tito Mukhopadhyay, demonstrating how disability politics restructures totalizing systems of domination without referring to rights or identity claims.

The Disabilities Act of 1990 and the Developmental Disabilities Assistance and Bill of Rights Act of 2000 of United States in act to prevent social exclusion of people with intellectual and developmental disabilities (IDDs) and to cut back on unneeded expenditures to society. However, despite the protective legislation, the rights of adults with neurodevelopmental disorders have not yet been fully realised. There are several obstacles to overcome the neurological development related health care services, including health care usage, educational (...) and career pathways, family and social lives, self-fulfilment, and quality of life. There are significant gaps in the transition process that affect the health care systems. Lack of transition and transfer planning, neurodevelopmental disorder health care pathway services have lack of experience, education, and expertise which result the inadequate growth of the health care quality and create communication gap in between service providers and service users. The aim of this short communication is to mention and clarify the ethical concerns of neurodevelopmental service evaluation. (shrink)

The social categories to which we belong—Latino, disabled, American, woman— causally influence our lives in deep and unavoidable ways. One might be pulled over by police because one is Latino, or one might receive a COVID vaccine sooner because one is American. Membership in these social categories most often falls outside of our control. This paper argues that membership in social categories constitutes a restriction on human agency, creating a situation of non-ideal agency for many human individuals. -/- However, there (...) are ways to resist the causal influence of social categories, and certain socially marginalized groups can be understood as attempting to do just this. I discuss two instances of social category resistance: gender pronouns and the rights of trans individuals. I suggest that the intentional declaration of gender pronouns (“she/her” or “they/them”) can be understood as an attempt to resist the causal powers of nonconsensual social categorization. Similarly, one among many reasons to support the rights of trans individuals is that their self-declarations of gender identity can be viewed as a reclamation of agency in the face of causal constraints imposed by socially defined and imposed gender categories. This lesson can be generalized to people belonging to a broad range of marginalized groups. (shrink)

According to higher-order theories of consciousness, a mental state is conscious only when represented by another mental state. Higher-order theories must predict there to be some brain areas (or networks of areas) such that, because they produce (the right kind of) higher-order states, the disabling of them brings about deficits in consciousness. It is commonly thought that the prefrontal cortex produces these kinds of higher-order states. In this paper, I first argue that this is likely correct, meaning that, if some (...) higher-order theory is true, prefrontal lesions should produce dramatic deficits in visual consciousness. I then survey prefrontal lesion data, looking for evidence of such deficits. I argue that no such deficits are to be found, and that this presents a compelling case against higher-order theories. (shrink)

What makes #BlackLivesMatter unique is the implication that it isn’t only some black lives that matter, that is, not only the most commonly referenced male lives. Rather, the hashtag suggests that all black lives matter, including queer, trans, disabled, and female. This movement includes all those black lives who have been marginalized within the black liberation tradition, as well as in greater society. The movement highlights the ways in which black people have been traditionally deprived of dignity and human (...) class='Hi'>rights. State racism and state violence are sustained together. The law creates a “subrace” out of those whom white society fears and holds in contempt. This leaves not only black Americans but all citizens vulnerable. A way to fight this form of racism is not only to create a solidarity among the oppressed members of the subrace but to create a solidarity with all members, in “vulnerable solidarity.”. (shrink)

Estimates of the burden of disease assess the mortality and morbidity that affect a population by producing summary measures of health such as quality-adjusted life years and disability-adjusted life years. These measures typically do not include stillbirths among the negative health outcomes they count. Priority-setting decisions that rely on these measures are therefore likely to place little value on preventing the more than three million stillbirths that occur annually worldwide. In contrast, neonatal deaths, which occur in comparable numbers, have (...) a substantial impact on burden of disease estimates and are commonly seen as a pressing health concern. In this article we argue in favor of incorporating unintended fetal deaths that occur late in pregnancy into estimates of the burden of disease. Our argument is based on the similarity between late-term fetuses and newborn infants and the assumption that protecting newborns is important. We respond to four objections to counting stillbirths: that fetuses are not yet part of the population and so their deaths should not be included in measures of population health; that valuing the prevention of stillbirths will undermine women's reproductive rights; that including stillbirths implies that miscarriages should also be included; and that birth itself is in fact ethically significant. We conclude that our proposal is ethically preferable to current practice and, if adopted, is likely to lead to improved decisions about health spending. (shrink)

Normal interpersonal treatment is often based on the existence of the rational nature of both the agent and the target of the treatment, and their relationship is reciprocal and mutual. However, when the rational person confronts the irrational person, such as the mentally retarded or vegetative person, the reciprocal relationship cannot be maintained because the targeted person loses his or her rational capacity. But this inequality does not deprive the object of action of the right to be treated rationally, because (...) people treat the irrationally disabled not according to the principle of reason but according to the principle of emotion - specifically, the principle of love. The principle of love often disregards the specific conditions of the object of treatment and still treats them reasonably. Thus, the emotional principle has a broader application in interpersonal treatment. (shrink)

In my paper I discuss the argument that the absence of the legal possibility to contract same-sex marriages is discriminatory. I argue that there is no analogy between the legal situation of same-sex couples and African-Americans, women or disabled persons in the nineteenth century. There are important natural differences between same-sex and different-sex couples that are good reasons for the legal disparities between them. The probability of having and raising children is one of them. Therefore, demanding that same-sex couples have (...) rights similar to those that married couples currently have in Poland and justifying that claim by alleged discrimination is neither correct nor fair. (shrink)

This Article falls into three general parts. The first part starts with an important question: is the insanity defense constitutionally required? The United States Supreme Court will finally try to answer this question next term in the case of Kahler v. Kansas. -/- I say “finally” because the Court refused to answer this question in 2012 when it denied certiorari to an appeal brought by John Joseph Delling, a severely mentally ill defendant who was sentenced to life in prison three (...) years earlier for two murders. Delling never had the opportunity to plead the insanity defense because his home state, Idaho, had abolished it in 1982. -/- By depriving Delling of the right to plead insanity, Idaho violated Delling’s Fourteenth Amendment right to due process and his Eighth Amendment right against “cruel and unusual” punishment. Naturally, the same is true for many other mentally ill and disabled defendants who have been prosecuted in Idaho and in the other three states that have abolished the insanity defense: Kansas, Montana, and Utah. -/- The second general part of this Article notes an insight that I stumbled upon in the course of researching the first part: the insanity defense and the mistake of law defense both require ignorance of the law, what I refer to as “normative ignorance.” Indeed, normative ignorance is what makes both of these defenses exculpatory in the first place. -/- Given this critical connection, there is a way for Idaho, Kansas, Montana, and Utah to resume compliance with the Constitution. Instead of reinstating the insanity defense per se, which might be politically unpopular, they should just broaden their mistake of law defense to include normative ignorance caused by cognitive incapacity that is itself caused by mental illness or disability. -/- Still, this Article is not merely directed at these four western states. It is directed at the other forty-six states as well. Because they already have an insanity defense, they need not incorporate it into their mistake of law defense. But in the third general part, I will argue that they should still expand their mistake of law defense to cover defendants who either lack a reasonable opportunity to learn the law or reasonably but mistakenly infer from widely accepted norms or ethics that their conduct is lawful. (shrink)