Disability Rights

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)

A review of Elizabeth Barnes' The Minority Body.

Recently, bioethicists and the UNCRPD have advocated for supported medical decision-making on behalf of patients with intellectual disabilities. But what does supported decision-making really entail? One compelling framework is Anita Silvers and Leslie Francis’ mental prosthesis account, which envisions supported decision-making as a process in which trustees act as mere appendages for the patient’s will; the trustee provides the cognitive tools the patient requires to realize her conception of her own good. We argue that supported decision-making would be better understood (...) as a collaborative process, giving patients with intellectual disabilities the opportunity to make decisions in a respectful relationship with trusted others. We offer an alternative account of supported decision-making where the primary constraint is to protect the patient from domination by the trustee. This is advantageous in its preservation of the prospects for genuine collaboration, for the mental prosthesis approach ultimately reinforces a problematic ideal of isolated patient self-determination. (shrink)

It may seem obvious that causing disability in another person is morally problematic in a way that removing or preventing a disability is not. This suggests that there is a moral asymmetry between causing disability and causing non-disability. This chapter investigates whether there are any differences between these two types of actions that might explain the existence of a general moral asymmetry. After setting aside the possibility that having a disability is almost always bad or harmful for a person (a (...) view that we have critiqued at length elsewhere), seven putative differences are considered. Ultimately, it is concluded that none of these seven factors can ground a general moral asymmetry between causing disability and causing non-disability, though each factor can provide some moral reason to avoid causing disability in certain particular cases. (shrink)

In this paper, I argue that, contrary to what some critics suggest, political liberalism is not exclusionary with regards to the rights and interests of individuals with cognitive disabilities. I begin by defending four publicly justifiable reasons that are collectively sufficient for the inclusion of members of this group. Briefly, these are the epistemic uncertainty that inevitably exists about individuals’ actual capacities, the political liberal duty to treat parents fairly, the social framework that is required for the fulfilment of parental (...) duties, and the necessity of cultivating certain emotions that are strongly associated with reasonableness. These reasons show why a more inclusive reading of political liberalism is plausible, and how this can be achieved without abandoning or revising the theory’s commitment to public reason, the political conception of the person, and the role of social cooperation. I then turn to the question of what a more inclusive political liberalism would look like. More specifically, I argue that, although it would not require the participation of individuals with cognitive disabilities in the practice of legitimation, it would require their full inclusion in the realm of justice as equal rights-bearers. (shrink)

This paper begins by saying enough about eugenics to explain why disability is central to eugenics (section 2), then elaborates on why cognitive disability has played and continues to play a special role in eugenics and in thinking about moral status (section 3) before identifying three reasons why eugenics remains a live issue in contemporary bioethics (section 4). After a reminder of the connections between Nazi eugenics, medicine, and bioethics (section 5), it returns to take up two more specific clusters (...) of issues at the intersection of eugenics, disability, and bioethics. These concern questions of life, death, and reproductive value (section 6) and the value of standpoint theory and epistemology for understanding some of the tensions between bioethics and disability in light of a shared eugenic past (section 7). (shrink)

This paper concerns the question of what makes disability discrimination morally objectionable. When I refer to disability discrimination, I am focusing solely on a failure or denial of reasonable accommodations to a disabled person. I argue a failure to provide reasonable accommodations is wrong when and because it violates principles of relational equality. To do so, I examine four accounts of wrongful discrimination found in the literature and apply these theories to disability discrimination. I argue that all of these accounts (...) leave us wanting because they have implausible implications or other limitations. I then defend my relational egalitarian theory of wrongful disability discrimination. I argue why principles of relational equality can explain the wrongness of failing to accommodate a disabled person. I will then illustrate how my account can identify plausible instances of disability discrimination while avoiding implausible implications. Finally, I discuss some further complications with my account while highlighting its benefits. Importantly, my argument can capture the distinctive wrongness of disability law and policy’s reasonable accommodation mandates. (shrink)

The nursing community in the United States polarized in September 2020 between Dawn Wooten's whistleblowing about forced hysterectomies at an immigration center in Georgia and the American Nurses Association's refusal to endorse a presidential candidate despite the Trump administration's mounting failures to address the public health crisis posed by the COVID‐19 pandemic. This reveals a need for more attention to political aspects of health outcome inequities. As advocates for health equity, nurses can join in recent scholarship and activism concerning the (...) political determinants of health. In this paper, we examine recent work on the political determinants of health with an aim to add two things. First, we seek to build further on the notion of “political” determinants of health by distinguishing policy and governance structures from dynamics of politicization through appeal to critical disabilities studies. Second, we seek to apply this further nuanced approach to challenge rhetorical uses of “vulnerable populations,” where this phrase serves to misrecognize systemic institutionalized forces that actively exploit and marginalize people and groups. By refocusing attention to political systems organized around and perpetuating inequitable health outcomes, nurses and other health care professionals—as well as those whom they serve—can concentrate their effort and power to act on political determinants of health in bringing about more equitable health outcomes. (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)

One challenge in providing an adequate definition of physical disability is unifying the heterogeneous bodily conditions that count as disabilities. We examine recent proposals by Elizabeth Barnes (2016), and Dana Howard and Sean Aas (2018), and show how this debate has reached an impasse. Barnes’ account struggles to deliver principled unification of the category of disability, whilst Howard and Aas’ account risks inappropriately sidelining the body. We argue that this impasse can be broken using a novel concept: marginalised functioning. Marginalised (...) functioning concerns the relationship between a person’s bodily capacities and their social world: specifically, their ability to function in line with the default norms about how people can typically physically function that influence the structuring of social space. We argue that attending to marginalised functioning allows us to develop, not one, but three different models of disability, all of which—whilst having different strengths and weaknesses—unify the category of disability without sidelining the body. (shrink)

In "Frailty Triage: Is Rationing Intensive Medical Treatment on the Grounds of Frailty Ethical?," Wilkinson (2021) argues that the use of frailty scores in ICU triage does not necessarily involve discrimination on the basis of disability. In support of this argument, he claims, “it is not the disability per se that the score is measuring – rather it is the underlying physiological and physical vulnerability." While we appreciate the attention Wilkinson explicitly pays to disability in this piece, we find the (...) distinction between disability and underlying vulnerability untenable both theoretically and practically. In this peer commentary, we begin with a brief overview of research in philosophy of disability concerning the meaning of the concept itself. We argue that this research demonstrates that many forms of disability do not involve underlying vulnerabilities, and, furthermore, that Wilkinson equivocates between "disability" understood as a medical category vs. "disability" understood as a feature of lived experience. We reject Wilkinson’s distinction on these grounds and offer further considerations to avoid disability discrimination in emergency and crisis standards of care contexts. (shrink)

The social model of disability claims that disadvantage from disability is primarily a result of the social response to bodily difference. Social modellers typically draw two normative conclusions: first, that society has a responsibility to address disability disadvantage as a matter of justice, not charity; second, that the appropriate way of addressing this disadvantage is to change social institutions themselves, to better fit for bodily difference, rather than to normalize bodies to fit existing institutions. This paper offers a qualified defense (...) of both inferences. Social institutions have reasons of justice to fix disability disadvantage, because the choice of institutions that contingently favor those whose bodies are statistically typical incurs responsibilities to compensate those who disfavored, in that choice. Among other things, this responsibility implies that societies should not simultaneously materially disadvantage disabled people, and also withhold symbolic resources, by demanding a presumption in favor of personal transformation – thereby, undermining the social conditions for disability pride. (shrink)

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)

We propose six guideposts that states and hospitals should follow to respect disability rights when designing policies for the allocation of scarce, lifesaving medical treatments. Four relate to criteria for decisions. First, do not use categorical exclusions, especially ones based on disability or diagnosis. Second, do not use perceived quality of life. Third, use hospital survival and near-term prognosis (e.g., death expected within a few years despite treatment) but not long-term life expectancy. Fourth, when patients who use ventilators in their (...) daily lives (e.g., home ventilation) present to acute care hospitals, their personal ventilators should not be reallocated to other patients. Fifth, designate triage officers to assess patients individually on the basis of objective medical evidence, not stereotypes or assumptions. Sixth, include disability rights advocates in policy development and dissemination. (shrink)

In this essay I ask what educational justice might require for children with autism in educational settings where “inclusion” entails not only meaningful access, but also where the educational setting is able to facilitate a sense of belonging and further is conducive to well-being. I argue when we attempt to answer the question “do inclusion policies deliver educational justice?” that we pay close attention to the specific dimensions of well-being for children with autism. Whatever the specifics of individual cases, both (...) an attitude and policy of inclusion must permit parents to choose pragmatic alternatives, i.e., different learning environments, if educational justice is to remain the overriding goal. (shrink)

Care is more than dispensing pills or cleaning beds. It is about responding to the entire patient. What is called “bedside manner” in medical personnel is a quality of treating the patient not as a mechanism but as a being—much like the caregiver—with desires, ideas, dreams, aspirations, and the gamut of mental and emotional character. As automata, answering an increasing functional need in care, are designed to enact care, the pressure is on their becoming more humanlike to carry out the (...) function more effectively. The question becomes not merely whether the care automaton can effect good bedside manner but whether the patient’s response is not feeling deceived by the humanlikeness. It seems the device must be designed either to effect explicit mere human-“likeness,” thus likely undermining its bedside-manner potential, or to fool the patient completely. Neither option is attractive. This article examines the social problems of designing maximally humanlike care automata and how problems may start to erode the human rights of users/patients. The article then investigates the alternatives for dealing with this problem, whether by industrial and professional self-regulation or public-policy initiatives. It then frames the problem in the broader historical perspective in terms of previous bans, moratoria, and other means of control of hazardous and potentially rights-violating techniques and materials. (shrink)

In this paper, I offer a solution to the Capacity/Equality Puzzle. The puzzle holds that an account of the franchise may adequately capture at most two of the following: (1) a political equality-based account of the franchise, (2) a capacity-based account of disenfranchising children, and (3) universal adult enfranchisement. To resolve the puzzle, I provide a complex liberal egalitarian justification of a moral requirement to disenfranchise children. I show that disenfranchising children is permitted by both the proper political liberal and (...) the proper political egalitarian understandings of the relationship between cognitive capacity and the franchise. Further, I argue, disenfranchising children is required by a minimalistic, procedural principle of collective competence in political decision-making. At the same time, I show that political equality requires the enfranchisement of all adults, regardless of cognitive capacities, and that the collective competence principle does not ground adult disenfranchisement. This justifies the progressive legal trend that holds the capacity-based disenfranchisement of adults to be incompatible with liberal democratic principles. (shrink)

This Essay explains why model policies proposed or adopted in response to the COVID-19 pandemic that allocate scarce medical resources by using medical evidence to pursue two core goals—saving more lives and saving more years of life—are compatible and consonant with disability law. Disability law, properly understood, permits considering medical evidence about patients’ probability of surviving treatment and the quantity of scarce treatments they will likely use. It also permits prioritizing health workers, and considering patients’ post-treatment life expectancy. These factors, (...) when based on medical evidence and not inaccurate stereotypes, are legal to consider even if they disadvantage some patients with specific disabilities. It then discusses the ethical advantages of triage policies that use medical evidence to save more lives and years of life, which I call “evidence-based triage,” focusing on the benefits of these policies for patients with disabilities. In doing so, I explain why recent critiques err by treating people with disabilities as a monolith, overlooking the political disadvantages of less-visible victims, and treating the social origins of scarcity as a justification for saving fewer lives. Evidence-based triage parallels other policy responses to the COVID-19 pandemic, like physical distancing and postponement of medical procedures, which may burden patients with specific disabilities or medical conditions but are nevertheless justified because they save more patients. (shrink)

The COVID-19 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)

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, a neurodiversity movement has arisen with essentially two aims: advocate for the rights and interests of individuals with autism, and 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. If this is right, autism’s disorder status might be maintained without deriving this result from any general account of disorder. (shrink)

It has been proposed that the ways in which the criminal justice system treats offenders with Autism spectrum condition should duly account for how the condition influences the offenders’ behavior. While the recommendation appears plausible, what adhering to it means in practice remains unclear. A central feature of ASC is seen to be that people with the condition have difficulties with understanding and reacting to the mental states of others in what are commonly considered as adequate ways. This article aims (...) to clarify how the difficulties affect the moral weight to be given to the good and bad motives of offending in sentencing offenders with ASC. I start by explicating the main points of departure of the endeavor. After that I assess the moral significance of the good and bad motives of offenders with ASC in view of four cases and a comparison with how we commonly treat people who are not as able to understand and react to the mental states of others as neurotypical adults. I suggest that considerations pertaining to what has been called the primary orientation of morality provide grounds for deeming the good motives of offenders with ASC as morally significant as those of otherwise similar neurotypical offenders and the bad motives of offenders with ASC as less morally significant than those of otherwise similar neurotypical offenders. After considering three possible objections to the suggestion, I conclude by briefly elucidating its purported import. (shrink)

Proposals for allocating scarce lifesaving resources in the face of the Covid-19 pandemic have aligned in some ways and conflicted in others. This paper attempts a kind of priority setting in addressing these conflicts. In the first part, we identify points on which we do not believe that reasonable people should differ—even if they do. These are (i) the inadequacy of traditional clinical ethics to address priority-setting in a pandemic; (ii) the relevance of saving lives; (iii) the flaws of first-come, (...) first-served allocation; (iv) the relevance of post-episode survival; (v) the difference between age and other factors that affect life-expectancy; and (vi) the need to avoid quality-of-life judgments. In the second part, we lay out some positions on which reasonable people can and do differ. These include (i) conflicts between maximizing benefits and priority to the worst off; (ii) role-based priority; and (iii) whether patients’ existing lifesaving resources should be subject to redistribution. (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?

What makes something a part of my body, for moral purposes? Is the body defined naturalistically: by biological relations, or psychological relations, or some combination of the two? This paper approaches this question by considering a borderline case: the status of prostheses. I argue that extant accounts of the body fail to capture prostheses as genuine body parts. Nor, however, do they provide plausible grounds for excluding prostheses, without excluding some paradigm organic parts in the process. I conclude by suggesting (...) that embodiment is moralized all the way down: to be a body part is to be the sort of thing that ought to be protected, in a certain way, by social practices. (shrink)

People with disabilities suffer from pervasive inequalities in employment, education, transportation, housing, and health care compared to those who are not disabled. Moreover, people with disabilities are often subject to unjustified stigma and pity. In this paper, I will explain why these disadvantages violate relational egalitarian principles of justice. As I will show, my argument can account for both kinds of inequality that disabled people face.

In this paper, I answer the following question: suppose that two individuals, C and D, have been in a long-term committed relationship, and D now has dementia, while C is competent; if D agrees to have sex with C, is it permissible for C to have sex with D? Ultimately, I defend the view that, under certain conditions, D can give valid consent to sex with C, rendering sex between them permissible. Specifically, I argue there is compelling reason to endorse (...) the following thesis: -/- Prior Consent Thesis: D, when competent, can give valid prior consent to sex with her competent partner (C) that will take place after she has dementia, assuming that D is the same person as she was when she gave prior consent, meaning that, if D, when competent, gave prior consent to sex with C, then C may permissibly have sex with D. In section I, I explain both the background and the existing literature on this issue. In section II, I outline relevant stipulations about the kinds of cases I will be examining. In section III, I defend the Prior Consent Thesis. And, in section IV, I address objections to the Prior Consent Thesis. (shrink)

even a brief review of disability narratives shows that many people with disabilities, encompassing a diverse range of impairments, encounter disruptions in their everyday interactions. Individuals with disabilities report that strangers and neighbors alike fail to communicate with them.1 Instead, people defer to friends, partners, and caretakers to offer some command over the interaction. These experiences might be understood as mere annoyances, part of the experience of impairment insofar as it undermines non-disabled individuals’ modes of interaction, leaving them fumbling, seeking (...) assurance that they are handling the situation correctly. But, read less cautiously, these frustrations are emblematic of a... (shrink)

This chapter focuses on moral personhood understood in terms of the notion of moral status. An entity is said to have moral status only if it or its interest matters morally for its own sake. Nonutilitarians tend to think of moral status in terms of entitlements and protections that can conflict with, and sometimes override, doing what would maximize the good and minimize the bad. If moral status comes in degrees, and if there is a status of the highest degree (...) (i.e., full moral status), then moral persons are those with full moral status. After giving a more precise account of it, we assess different views of what it takes to qualify for full moral status (some of which appeal to metaphysical notions of person). We also briefly discuss how metaphysical notions of personhood are put to moral use in utilitarian moral theorizing that eschews the notion of moral personhood. (shrink)

It is increasingly clear that children's excessive consumption of products high in added sugar causes obesity and obesity-related health problems like type 2 diabetes, cardiovascular disease, and metabolic syndrome. Less clear is how best to address this problem through public health policy. In contrast to policies that might conflict with adult's right to self-determination — for example sugar taxes and soda bans — this article proposes that children's access to products high in added sugars should be restricted in the same (...) way that children's access to tobacco products is restricted. The article first considers how the recommended policy will protect a child's right to an open future while not violating parental rights. The article then explores how the implementation of the recommended policy can help transform the social meaning of sugar and thereby curb the parental supply of added sugar to children — a central cause of obesity. The article also addresses several potential objections. (shrink)

In "Disabilities and First-Person Testimony: A Case of Defeat?" Hilary Yancey argues that in at least some cases we have “no significant reason to distrust” the evidential value of first-person testimony concerning the impact of a physical disability on that individual’s well-being. Her argument is premised on a defeasible principle of trust: One should trust the testimony of others regarding p whenever one recognizes that the testifier is in a position to know p. Since the subjective component of wellbeing is (...) fist-person privileged, that is, ordinarily the subject herself is in the best position to know, an audience to such testimony must be aware of a defeater in order to shift the burden of proof and block the testimony from counting as evidence. In the body of the paper Yancey argues that 1) conflicting first-person testimony does not constitute an inescapable content defeater and 2) neither irrational adaptive preferences nor low life expectations inescapably undercuts the reliability of these testifiers regarding matters of their own subjective well-being. The burden of proof is not globally shifted by either kind of defeater, Yancey argues, so at least some first-person testimony about disability must inform our beliefs about the nature of disabilities. In my comment I ask and attempt to answer three questions on Yancy’s behalf, then invite her to set me straight if I have it wrong. I go Kantian along the way. 1. Whence arises the worry, and why focus on these defeaters? 2. How common is PNT, anyway, and why does it matter? 3. On what grounds should we distrust PNT in particular cases? (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 chapter develops a civic republican approach to disability justice. It begins by articulating a republican account of liberty as nondomination before showing how such domination can shape the relationships of people with disabilities. This leads to a consideration of whether disability justice can be defined in terms of maximizing or sufficient nondomination. Instead, the chapter provides a civic framework within which republican disability justice can be understood, encompassing both the absence of oppressive relationships and the presence of capabilities of (...) special egalitarian concern. It also considers some specific normative implications of a republican account of disability justice—doubting the suitability of contestatory democracy but pointing toward the merits of self-education and universal basic income. Finally, the objection that this republican approach to disability justice unreasonably denigrates dependence is rebutted. (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 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)

Eugenics does not feel so distant from where I stand. This essay explains why.

Projects of human improvement take both individual and intergenerational forms. The biosciences provide many technologies, including prenatal screening and the latest gene editing techniques, such as CRISPR, that have been viewed as providing the means to human improvement across generations. But who is fit to furnish the next generation? Historically, eugenics epitomizes the science-based attempt to improve human society through distinguishing kinds of people and then implementing social policies—from immigration restriction to sexual sterilization and euthanasia—that influence and even direct what (...) sorts of people populate our future. Despite recognition of the horrors of the eugenic extremes of the past and of the subhumanizing of those sufficiently below appearance or ability norms to be viewed as “defective” or “unfit”, many people continue to be drawn to strands of eugenic thinking. (shrink)

Independence was a core value of the movement for disability rights. People with disabilities did not have to be dependent, advocates claimed; they were robbed of autonomy by poverty, social prejudice, and architectural barriers. Recently, critics have noted that the emphasis on independence equates personhood with autonomy, reason, and self-awareness, thereby excluding those who are incapable of self-determination. The stigma of dependency is communicated to caregivers whose work is devalued and undercompensated. These values are echoed in the life writing of (...) people with disabilities, which tends to present a singular narrative voice, even when the author requires assistance in the physical or intellectual work of composition. The 1979 Mexican memoir-testimonio Gaby Brimmer, collaboratively authored by the acclaimed journalist Elena Poniatowska, Brimmer, her mother, and her paid caregiver is a notable exception. Consisting of interwoven dialogue among its three informants, Gaby Brimmer enacts dependency at the level of form, while exploring the challenges and opportunities of interdependence in societies that devalue the giving and receiving of care. (shrink)

It is widely assumed that disability is typically a bad thing for those who are disabled. Our purpose in this essay is to critique this view and defend a more nuanced picture of the relationship between disability and well-being. We first examine four interpretations of the above view and argue that it is false on each interpretation. We then ask whether disability is thereby a neutral trait. Our view is that most disabilities are neutral in one sense, though we cannot (...) make simple generalizations about disability's relationship to well-being in other important senses. After defending this view, we discuss its practical implications for selective abortion for disability, nondisabled people's interactions with disabled people, and the use of QALYs in health policy. (shrink)

Having and raising children is widely regarded as one of the most valuable projects a person can choose to undertake. Yet many disabled people find it difficult to share in this value because of obstacles that arise from widespread social attitudes about disability. A common assumption is that having a disability tends to make someone unfit to parent. This assumption may seem especially relevant as a factor in decisions about whether to allow, encourage and assist disabled people to reproduce and (...) raise children. Yet there are reasons to doubt whether there is such a close connection between having a disability and lacking the ability to raise a child well. The aims of this paper are, first, to identify and clarify some values that are relevant to questions about allowing, encouraging and assisting disabled people to procreate and raise children, second, to give an overview of how these values can help us to address certain legal questions that arise for disabled people who aim to procreate and parent, third, to raise concerns about how to properly assess the parenting capacities of people with disabilities, and fourth, to suggest some ways in which having a disability can actually make someone a better parent. (shrink)

I attempt to adjudicate the disagreement between those who seek to reconceptualize disability as mere difference and their opponents. I do so by reviewing a central conviction motivating the resistance, concerning the relationship between disability and well-being. I argue that the conviction depends on further considerations about the costs and extent of change involved in accommodating individuals with a particular disability trait. I conclude by considering three pay-offs of this clarification.

The deliberative systems approach is a recent innovation within the tradition of deliberative democratic theory. It signals an important shift in focus from the political legitimacy produced within isolated and formal sites of deliberation (e.g., Parliament or deliberative mini-publics), to the legitimacy produced by a number of diverse interconnected sites. In this respect, the deliberative systems (DS) approach is better equipped to identify and address defects arising from the systemic influences of power and coercion. In this article, I examine one (...) of the least explored and least understood defects: the exclusion of non-speaking political actors generated by the uniform privileging of speech in all sites within a system. Using the examples of prefigurative protest, Indigenous refusal to deliberate, and the non-deliberative agency of disabled citizens, I argue that the DS approach allows theorists to better understand forms of domination related to the imposition of speech on those who are either unwilling or unable to speak. (shrink)

Eugenics is commonly thought of as having endured as science and social movement only until 1945. With the advance of both reproductive and enhancement technologies, however, concern has arisen that eugenics has resurfaced in new forms. In particular, the eugenic potential of the Human Genome Project led to talk of the rise of ‘newgenics’ and of a backdoor to eugenics. This article focuses on such concerns deriving from the practice of prenatal screening and technologies that increase our ability to generate (...) information about the kinds of children we are likely to have. Given individual preferences and social norms concerning what traits are intergenerationally desirable, how should we act and what practices and policies should we endorse or scrutinise? This article will concentrate on key components of eugenic thinking present today and emphasise continuities between the eugenic past and new- genic present in the subhumanisation of people with cognitive or intellectual disabilities. (shrink)

The Eugenic Mind Project is a wide-ranging, philosophical book that explores and critiques both past and present eugenic thinking, drawing on the author’s intimate knowledge of eugenics in North America and his previous work on the cognitive, biological, and social sciences, the fragile sciences. Informed by the perspectives of Canadian eugenics survivors in the province of Alberta, The Eugenic Mind Project recounts the history of eugenics and the thinking that drove it, and critically engages contemporary manifestations of eugenic thought, newgenics. (...) An accessible, original work of scholarship adopting what the author calls a standpoint eugenics, this book focuses on the roots of eugenic thinking past and present. It will provoke and enrich discussions about human nature and human diversity, the social uses of biotechnology, and social policy governing future generations. You can download the preface and acknowledgements here. (shrink)

Disability is primarily a social phenomenon -- a way of being a minority, a way of facing social oppression, but not a way of being inherently or intrinsically worse off. This is how disability is understood in the Disability Rights and Disability Pride movements; but there is a massive disconnect with the way disability is typically viewed within analytic philosophy. The idea that disability is not inherently bad or sub-optimal is one that many philosophers treat with open skepticism, and sometimes (...) even with scorn. The goal of this book is to articulate and defend a version of the view of disability that is common in the Disability Rights movement. To be physically disabled is not to have a defective body, but simply to have a minority body. (shrink)

Eilers Miriam, Gru¨ber Katrin, and Rehmann-Sutter Christoph’s latest edited volume, The Human Enhancement Debate and Disability: New Bodies for a Better Life, may at first seem to be just another book about human enhancement, on which there is a significant detailed literature. But, in fact, this book provides a novel16 perspective to the human enhancement debate by observing it through the disability lens, even as it gathers contributions from various experts from diverse fields. This interdisciplinary approach shows how disability and (...) human enhancement are tightly correlated in the debate on the latter. (shrink)

In a critical intervention into the bioethics debate over human enhancement, philosopher Melinda Hall tackles the claim that the expansion and development of human capacities is a moral obligation. Hall draws on French philosopher Michel Foucault to reveal and challenge the ways disability is central to the conversation. The Bioethics of Enhancement includes a close reading and analysis of the last century of enhancement thinking and contemporary transhumanist thinkers, the strongest promoters of the obligation to pursue enhancement technology. With specific (...) attention to the work of bioethicists Nick Bostrom and Julian Savulescu, the book challenges the rhetoric and strategies of enhancement thinking. These include the desire to transcend the body and decide who should live in future generations through emerging technologies such as genetic selection. Hall provides new analyses rethinking both the philosophy of enhancement and disability, arguing that enhancement should be a matter of social and political interventions, not genetic and biological interventions. Hall concludes that human vulnerability and difference should be cherished rather than extinguished. -/- This book will be of interest to academics working in bioethics and disability studies, along with those working in Continental philosophy (especially on Foucault). (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)

Many contemporary accounts of moral status consider an individual's status to be grounded in some cognitive capacity, e.g. the capacity to experience certain states, to reason morally, etc. One proposed cognitive capacity significant particularly to killing, i.e. having a status that precludes being killed absent cause, is the capacity to value one's own life. I argue that considering this a condition for moral status is a mistake, as it would lead to the exclusion of some individuals with mental health problems (...) who are generally considered clear cases. -/- While a cognitive capacities approach may turn out to be generally feasible, that particular cognitive capacity is not. In the course of this discussion I address two conceptual issues, the first regarding what it means to 'value ones life' and the second regarding what conditions must obtain for something to count as a capacity. These conceptual issues, when resolved pursuant to this account of moral status, lead the account to exclude individuals with major depressive disorder, i.e. deny that it is morally wrong to kill such individuals based on their moral status. I then argue that this is a decisive reason to reject this particular cognitive capacity as implicated in moral status. (shrink)

The deeply entrenched, sometimes heated conflict between the disability movement and the profession of bioethics is well known and well documented. Critiques of prenatal diagnosis and selective abortion are probably the most salient and most sophisticated of disability studies scholars’ engagements with bioethics, but there are many other topics over which disability activists and scholars have encountered the field of bioethics in an adversarial way, including health care rationing, growth-attenuation interventions, assisted reproduction technology, and physician-assisted suicide. -/- The tension between (...) the analyses of the disabilities studies scholars and mainstream bioethics is not merely a conflict between two insular political groups, however; it is, rather, also an encounter between those who have experienced disability and those who have not. This paper explores that idea. I maintain that it is a mistake to think of this conflict as arising just from a difference in ideology or political commitments because it represents a much deeper difference—one rooted in variations in how human beings perceive and reason about moral problems. These are what I will refer to as variations of moral psychology. The lived experiences of disability produce variations in moral psychology that are at the heart of the moral conflict between the disability movement and mainstream bioethics. I will illustrate this point by exploring how the disability movement and mainstream bioethics come into conflict when perceiving and analyzing the moral problem of physician-assisted suicide via the lens of the principle of respect for autonomy. To reconcile its contemporary and historical conflict with the disability movement, the field of bioethics must engage with and fully consider the two groups’ differences in moral perception and reasoning, not just the explicit moral and political arguments of the disability movement. (shrink)