Review of: In god's image: recognizing the profoundly impaired as persons, by Peter A. Comensoli, edited by Nigel Zimmermann,, pp. 243, paperback, US$31.00.

The formal justice model proposed by Anita Silvers in Disability, Discrimination, and Difference emphasizes the social model of disability and the need for full equality of opportunity, and it suggests that a distributive model of justice that gives special benefits to individuals with disabilities is self-defeating. Yet in that work, Silvers allows an exception for the "profoundly impaired." In this paper, I show how the formal justice theory falls short when it comes to defining and dealing with "profoundly impaired" individuals (...) and explore the ways in which making the exception raises serious theoretical concerns for the grounding of the formal justice model. (shrink)

Although almost completely ignored, Aquinas’s account of persons with severe intellectual disabilities is key to his understanding of human persons and their salvation. Aquinas extensively addresses questions of human impairment, and for Aquinas physical and mental impairment are not nearly as important as moral or spiritual impairment. Contrary to those who focus on Aquinas’s account of rationality and suppose he thinks that a person must exercise rationality in order to be moral and in the image of God, (...) Aquinas’s view is that persons with severe mental impairments have a distinct spiritual advantage, due to the impeccability of the gift of wisdom given them in their baptism. (shrink)

It is a familiar idea that showing respect for someone requires an effort to take account of how she sees the world. There is more than one way we might do this. Williams suggests that each person is owed an effort at identification, whereas Rawls remarks that “mutual respect is shown … in our willingness to see the situation of others from their point of view.” The author explores these ideas as they apply to people with profound and multiple (...) learning difficulties and disabilities (PMLD), whose condition raises special difficulties in the way of complying with the conduct described here. The author examines the ideas of having a point of view and identifying with the person whose point of view it is, and shows how much—and also how little—these views can contribute to a principle of respect that includes people with PMLD. (shrink)

To define the determinants of impaired facial emotion recognition (FER) in patients with mesial temporal lobe epilepsy associated with hippocampal sclerosis (MTLE-HS), we examined 76 patients with unilateral MTLE-HS, 36 prior to antero-mesial temporal lobectomy (AMTL) and 40 after AMTL, and 28 healthy control subjects with a FER test consisting of 60 items (20 each for anger, fear, and happiness). Mean percentages of the accurate responses were calculated for different subgroups: right vs. left MTLE-HS, early (age at onset <6 years) (...) vs. late-onset, and before vs. after AMTL. After controlling for years of education, duration of epilepsy and number of antiepileptic drugs (AEDs) taken, on multivariate analysis, fear recognition was profoundly impaired in early-onset right MTLE-HS patients compared to other MTLE patients and control subjects. Happiness recognition was significantly better in post-AMTL MTLE-HS patients compared to pre-AMTL patients while anger and fear recognition did not differ. We conclude that patients with right MTLE-HS with age at seizure onset <6 years are maximally predisposed to impaired fear recognition. In them, right AMTL does not further worsen FER abilities. Longitudinal studies comparing FER in the same patients before and after AMTL will be required to refine and confirm our cross-sectional observations. (shrink)

Martha Nussbaum has sought to establish the significance of disability for liberal theories of justice. She proposes that human dignity can serve as the basis of an entitlement to a set of capabilities that all human beings either possess or have the potential to develop. This article considers whether the concept of human dignity will serve as the justification for basic human capabilities in accounting for the demands of justice for people with profound learning difficulties and disabilities. It examines (...) the relationship between dignity and capabilities, suggesting that Nussbaum fails to distinguish between several conceptions of human dignity, whilst also identifying one of these conceptions as coming close to meeting several of her demands. It is difficult enough, however, to show how dignity is related to just one of our basic entitlements, and even that requires more than the resources available in Nussbaum's approach. (shrink)

Growing numbers of human beings live with profound and multiple learning difficulties and disabilities. Exploring the moral, social and political implications of this trend, Valuing Profoundly Disabled People addresses questions that are high on policy and practice agendas in numerous regions around the world, including the UK and the EU, the USA, and Australasia. In this important work Vorhaus examines fundamental moral and social questions about profound disability, and each chapter combines a comprehensive review of existing literature with (...) thought-provoking and original philosophical arguments. Vorhaus argues that there is a pressing need to consider the moral and political claims of people whose lives are characterised by extensive impairments, dependency and vulnerability. The book prompts readers to reflect on complex issues relating to the practices of caring, teaching and treating people with profound disabilities in contexts such as education, health care and social policy. Providing a much-needed contribution to the field, this book will be of interest to postgraduates, academics and researchers in a number of distinct and interrelated fields, including disability and impairment, human rights, philosophy, sociology, health and social policy, and education. The book will also be of great interest to practitioners and policymakers seeking to promote the aims of realising human potential and respecting disability. (shrink)

The partnership between a visually impaired runner (VIR) and sighted guide runner (SGR) constitutes a unique sporting dyad. The quality of these partnerships may profoundly impact the sport and physical activity (PA) experiences of visually impaired (VI) people, yet little is known about the experiences of VIRs and SGRs. This study aimed to explore qualitatively the running experiences of VIRs and SGRs. Five VIRs and five SGRs took part in in-depth, semi-structured interviews (M length = 62 minutes) exploring their running (...) journeys and perceptions of running-together. We analysed the dataset using reflexive thematic analysis. Four themes were generated, comprising: becoming and being a running team; a multifaceted intercorporeal experience; running-together promotes change; and disabling social interaction within running. Participants were generally positive about their running experiences, highlighting a range of benefits derived from the activity. Nevertheless, some examples of barriers to participation were also identified. Although the positive experiences described by the runners suggest guided running holds promise to increase PA in VI people, our findings illustrate the importance of directing attention towards developing high-quality relationships between VIRs and guides, alongside reinforcing the need for further change to promote inclusivity. (shrink)

We propose an action-oriented understanding of emotion. Emotions are modifications of a basic form of goal-oriented striving characteristic of human life. They are appetitive orientations: pursuits of the good, avoidances of the bad. Thus, emotions are not truly distinct from, let alone opposed to, actions -- as erroneously suggested by the classical understanding of emotions as 'passions'. In the present paper, we will outline and defend this broadly enactive approach and motivate its main claims. Our proposal gains plausibility from a (...) literature- and interview-based investigation of emotional changes characteristic of clinical depression. Much narrative evidence from patient reports points towards the conclusion that many of those changes might result from a catastrophic alteration of the basic form of goal-pursuit at the root of human emotionality. The experience of profound depression could in this respect be a kind of inverted image of non-pathological emotionality--a highly unnatural passivity, giving rise to a profound -- and quite horrifying -- sense of incapacity. (shrink)

Depersonalization is characterised by a profound disruption of self-awareness mainly characterised by feelings of disembodiment and subjective emotional numbing.It has been proposed that depersonalization is caused by a fronto-limbic suppressive mechanism – presumably mediated via attention – which manifests subjectively as emotional numbing, and disables the process by which perception and cognition normally become emotionally coloured, giving rise to a subjective feeling of ‘unreality’.Our functional neuroimaging and psychophysiological studies support the above model and indicate that, compared with normal and (...) clinical controls, DPD patients show increased prefrontal activation as well as reduced activation in insula/limbic-related areas to aversive, arousing emotional stimuli.Although a putative inhibitory mechanism on emotional processing might account for the emotional numbing and characteristic perceptual detachment, it is likely, as suggested by some studies, that parietal mechanisms underpin feelings of disembodiment and lack of agency feelings. (shrink)

Dignity, usually considered an essential ethical value in healthcare, is a relatively complex, multifaceted concept. However, healthcare professionals often have only a vague idea of what it means to respect dignity when providing care, especially for persons with impaired autonomy. This article focuses on two concepts of dignity, human dignity and dignity of identity, and aims to analyse how these concepts can be applied in the care for persons with impaired autonomy and in furthering the practice of respect and protection (...) from harm. Three vignettes were designed to illustrate typical caring situations involving patients with mild to severely impaired autonomy, including patients with cognitive impairments. In situations like these, there is a risk of the patient’s dignity being disrespected and violated. The vignettes were then analysed with respect to the two concepts of dignity to find out whether this approach can illuminate what is at stake in these situations and to provide an understanding of which measures could safeguard the dignity of these patients. The analysis showed that there are profound ethical challenges in the daily care of persons with impaired autonomy. We suggest that these two concepts of human dignity could help guide healthcare professionals to develop practical skills in person-centred, ethically grounded care, where the patient’s wishes and needs are the starting point. (shrink)

One of the demands facing the church is the call for unity with Christians with profound intellectual and physical impairments. As the church becomes a community of justice with and for people with impairments, she is an instrument of God's shalom. However, too many of our sisters and brothers with impairments find themselves on the outside looking in. How can the church continue to move toward a more complete welcome and participation? Responding to this theological question precedes clinical or (...) legal concerns. The best the world has to offer is not what the church needs, though she can learn from reasonable professional approaches. The message and peace of Christ can undo the walls of separation that keep Christians with impairments out. Such a transformation would be a sign that the church is being built up in peace, and would offer a model of true communion among a diversity of people. (shrink)

Many accounts of the grounds for human moral standing rely on the possession of higher-order capacities of mind that serve as status-conferring attributes, to the exclusion of those with significant intellectual impairments. Interconnectedly, our relationships with those with profound intellectual disability (PID) remain beneath their potential. Taking as a starting point Peter Singer’s graduated account of moral status, its assumptions about PID, and its implications for what we owe those with PID, I argue that rather than conceptualizing PIDs as (...) severe cognitive deficit, we should characterize them as disabilities marked by the impossibility of successful, mutual linguistic communication. Considering existing relationships between non-PID and PID pairs, I center the potential for atypical forms of communication. I close with the beginnings of a more extensionally adequate grounds for moral status, where moral standing is a product of one’s being able to participate in the shared activity of developing and deepening relationships. (shrink)

Many accounts of the grounds for human moral standing rely on the possession of higher-order capacities of mind that serve as status-conferring attributes, to the exclusion of those with significant intellectual impairments. Interconnectedly, our relationships with those with profound intellectual disability (PID) remain beneath their potential. Taking as a starting point Peter Singer’s graduated account of moral status, its assumptions about PID, and its implications for what we owe those with PID, I argue that rather than conceptualizing PIDs as (...) severe cognitive deficit, we should characterize them as disabilities marked by the impossibility of successful, mutual linguistic communication. Considering existing relationships between non-PID and PID pairs, I center the potential for atypical forms of communication. I close with the beginnings of a more extensionally adequate grounds for moral status, where moral standing is a product of one’s being able to participate in the shared activity of developing and deepening relationships. (shrink)

Alcohol use disorder is one of the most common substance use disorders contributing to both behavioral and cognitive impairments in patients with AUD. Recent neuroimaging studies point out that AUD is a typical disorder featured by altered functional connectivity. However, the details about how voxel-wise functional coordination remain unknown. Here, we adopted a newly proposed method named functional connectivity density to depict altered voxel-wise functional coordination in AUD. The novel functional imaging technique, FCD, provides a comprehensive analytical method for brain's (...) “scale-free” networks. We applied resting-state functional MRI toward subjects to obtain their FCD, including global FCD, local FCD, and long-range FCD. Sixty-one patients with AUD and 29 healthy controls were recruited, and patients with AUD were further divided into alcohol-related cognitive impairment group and non-cognitive impairment group. All subjects were asked to stay stationary during the scan in order to calculate the resting-state gFCD, lFCD, and lrFCD values, and further investigate the abnormal connectivity alterations among AUD-NCI, ARCI, and HC. Compared to HC, both AUD groups exhibited significantly altered gFCD in the left inferior occipital lobe, left calcarine, altered lFCD in right lingual, and altered lrFCD in ventromedial frontal gyrus. It is notable that gFCD of the ARCI group was found to be significantly deviated from AUD-NCI and HC in left medial frontal gyrus, which changes probably contributed by the impairment in cognition. In addition, no significant differences in gFCD were found between ARCI and HC in left parahippocampal, while ARCI and HC were profoundly deviated from AUD-NCI, possibly reflecting a compensation of cognition impairment. Further analysis showed that within patients with AUD, gFCD values in left medial frontal gyrus are negatively correlated with MMSE scores, while lFCD values in left inferior occipital lobe are positively related to ADS scores. In conclusion, patients with AUD exhibited significantly altered functional connectivity patterns mainly in several left hemisphere brain regions, while patients with AUD with or without cognitive impairment also demonstrated intergroup FCD differences which correlated with symptom severity, and patients with AUD cognitive impairment would suffer less severe alcohol dependence. This difference in symptom severity probably served as a compensation for cognitive impairment, suggesting a difference in pathological pathways. These findings assisted future AUD studies by providing insight into possible pathological mechanisms. (shrink)

Hearing loss has been identified as a major modifiable risk factors for dementia. Adult candidates for cochlear implantation represent a population at risk of hearing loss-associated cognitive decline. This study investigated the effect of demographics, habits, and medical and psychological risk factors on cognition within such a cohort. Data from 34 consecutive adults with post-lingual deafness scheduled for CI were analyzed. Pure tone audiometry and Speech Discrimination Score were recorded. The Repeatable Battery for Assessment of Neuropsychological Status for Hearing impaired (...) individuals was used to measure cognition. Demographics, habits, and medical factors were evaluated. Depression was measured using the Hospital Anxiety and Depression Scale, and social inhibition with the Type D questionnaire. All participants suffered from severe to profound hearing loss. The mean RBANS-H total score was 83 ± 16. Participants reported a mean of years of formal education of 12 ± 5 years. The prevalence of habits and medical risk factors was: physical inactivity, body mass index >30, traumatic brain injury, hypertension, heavy alcohol consumption, smoking, and diabetes. Regarding psychological factors, the mean scores of social inhibition and depression were 10 ± 6 and 6 ± 5, respectively. The number of years of education was significantly correlated with the RBANS-H total score, and with the domains “Immediate memory”, “Visuospatial/constructional”, and “Attention”. The mean RBANS-H total score in participants who had university studies or higher level was 97 ± 9, with the remaining participants reporting a mean score of 75 ± 15. Men performed better in the “Visuospatial/constructional”. Physical inactivity was associated with lower scores in the “Delayed memory” ; hypertension correlated with lower RBANS-H total scores and “Attention”. Depression and social inhibition were negatively correlated with RBANS-H total score and with the “Immediate memory,” “Visuospatial/constructional,” and “Attention”. In adults with late-onset deafness scheduled to CI, educational level has a significant effect. Additionally, sex, physical inactivity, hypertension, and psychological traits of social inhibition and depression may also influence cognitive status. Long-term studies with more participants would enable us better understand the effects different risk factors on cognitive status. (shrink)

Individuals who are profoundly mentally handicapped do not have the capacity to make their own decisions and also do not have a past record of decisions, from when they had capacity, to guide us in making decisions for them. They represent a difficult group, ethically, for surrogate decision making. Here I propose some guidelines, distinguishing between these patients and patients in a persistent vegetative state (PVS). As the life span of patients becomes shorter, or their level of consciousness becomes permanently (...) impaired, the presumption for comfort care should become an imperative, and the standard of evidence to justify any invasive intervention should become higher. For members of this population, who have no more ability to refuse treatment than to consent to it, protection of the vulnerable must mean allowing a peaceful death as well as a comfortable life. Reasonable legal safeguards are also proposed to allow improved end-of-life decisions to be made for this population. (shrink)

The controversy over the so-called Ashley Treatment (AT), a series of medical procedures that inhibited both growth and sexual development in the body of a profoundly intellectually impaired girl, usually centers either on Ashley’s rights, including a right to an intact, unaltered body, or on Ashley’s parents’ rights to make decisions for her. The claim made by her parents, that the procedure would improve their ability to care for her, is often dismissed as inappropriate or, at best, irrelevant. We argue, (...) however, that caregiving is a central issue in the controversy, as Ashley’s need for caregiving is a defining characteristic of her life. In this article, we analyze the ethics of the Ashley Treatment within the context of family caregiving. Through the physical and emotional work of caregiving, families participate in the formation and maintenance of personal identity, a process that Hilde Lindemann recently called “holding.” We argue that, in an intellectually disabled person such as Ashley, who depends on her family for every aspect of her care, the family’s contribution to identity is an essential source of personhood. We believe that the treatment can be justified if it is indeed an instance of appropriate family “holding” for Ashley. (shrink)

This paper resolves a paradox concerning colour constancy. On the one hand, our intuitive, pre-theoretical concept holds that colour constancy involves invariance in the perceived colours of surfaces under changes in illumination. On the other, there is a robust scientific consensus that colour constancy can persist in cerebral achromatopsia, a profound impairment in the ability to perceive colours. The first stage of the solution advocates pluralism about our colour constancy capacities. The second details the close relationship between colour (...) constancy and contrast. The third argues that achromatopsics retain a basic type of colour constancy associated with invariants in contrast processing. The fourth suggests that one person-level, conscious upshot of such processing is the visual awareness of chromatic contrasts ‘at’ the edges of surfaces, implicating the ‘colour for form’ perceptual function. This primitive type of constancy sheds new light on our most basic perceptual capacities, which mark the lower borders of representational mind. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Ethics CommentaryMichael Robertson, Senior Research FellowThe French philosopher Michel Foucault once recounted the story of the English King, George III, being restrained by his guards at the direction of his physician Dr. Willis. King George, presumably deranged by a psychotic mania consequent upon porphyria, was incapable of self-rule and his power was usurped by the medical profession in an act of coercion tantamount to treason. This for Foucault was (...) a profound metaphor of psychiatric power.1The plight of Mdm. W yokes the two most emotive issues in psychiatry — involuntary treatment and the administration of ECT. Whilst only utilised at an extremity of clinical practice, both of these are the most misunderstood of actions performed by the psychiatric profession. Yet, in many circumstances, they are life-saving.In essence, we are confronted with a profoundly depressed woman, whose illness is seemingly resistant to first line treatment and poses a serious, credible risk of harm. Most psychiatrists would regard this as somewhat of a psychiatric emergency. We are informed that Mdm. W’s family has transcended any cultural taboos about mental illness and is engaged in her care, has an extensive lived experience of her severe mood disorder and accepts, indeed welcomes, the use of ECT to terminate a severe episode of depression. In the course of a psychotic depression, Mdm. W is suffering profound distress and presents a risk of either suicide or serious medical complications if the episode persists. Despite the minimal discomfort during the actual administration of ECT, Mdm. W’s distress will be compounded by the further restraint needed to prevent from her eating and drinking prior to anaesthesia.It is difficult to know what Mdm. W’s experience of this situation would [End Page 230] be. Through the prism of her disturbed mental state, with its derangements in thinking, cognitive functioning and apprehension of reality, she would likely experience the situation as one of fear or terror; she would likely interpret ECT and the enforced restriction of oral intake prior to the procedure as punitive — further evidence of her “sins”, reinforcing her delusional guilt and nihilism. Yet to speak to Mdm. W in circumstances of euthymia or normal mood, where such derangements no longer occur, might reveal an utterly different perspective on the situation. Like many people with episodic mental illnesses, Mdm. W might, when such a scenario was put to her, consent to future treatment with ECT without equivocation. Indeed, many patients with bipolar disorder formulate advance directives in regard to the specific management of their possible future episodes of illness.If the clinical and legal aspects of this situation are so clear, why is there a sense of a dilemma in the realm of clinical ethics? Beyond the emotive nature of the situation, we see a deeply distressed woman being provided potentially life-saving treatment, which is being denied to her by the profound impairments of insight and judgement consequent upon her illness.In Singapore, such detention and enforced treatment under the Mental Capacity Act (2010) applies to a person with a mental illness or disorder who lacks capacity to make decisions in their own best interests based upon impairment of mind or brain. This would be considered a “capacity” based mental health law. In other jurisdictions, the legal test and evidentiary justification for such care may be predicated upon risk of harm to self or others. In either setting, Mdm. W’s clinical situation provides adequate legal justification for such enforced care.The moral justification of such laws falls into two general categories — the “risk” argument and the “capacity” argument. In mental health legislation, the “harm principle”, as first elaborated in John Stuart Mill’s On Liberty,2 is usually defined in terms of the construct of “risk”. Risk is a term that has multiple meanings in different disciplinary contexts, although all approaches to “risk” attempt to apply knowledge to an area of uncertainty.3 The notion of “risk assessment” is usually considered as the process of categorising individuals by their perceived likelihood of causing serious harm to themselves or harm to others. In the insurance industry, actuarial assessment is a mathematical discipline aimed at computing a probability of adversity... (shrink)

In clinical practice, and in the medical literature, severe congenital malformations such as trisomy 18, anencephaly, and renal agenesis are frequently referred to as ‘lethal’ or as ‘incompatible with life’. However, there is no agreement about a definition of lethal malformations, nor which conditions should be included in this category. Review of outcomes for malformations commonly designated ‘lethal’ reveals that prolonged survival is possible, even if rare. This article analyses the concept of lethal malformations and compares it to the problematic (...) concept of ‘futility’. We recommend avoiding the term ‘lethal’ and suggest that counseling should focus on salient prognostic features instead. For conditions with a high chance of early death or profound impairment in survivors despite treatment, perinatal and neonatal palliative care would be ethical. However, active obstetric and neonatal management, if desired, may also sometimes be appropriate. (shrink)

Patients’ and families’ greatest need is often to do what for them is most meaningful. This may be, for example, their religion, their family, or their doing good for others. This piece will explore ways in which care providers may help maximize these ends. Paradigms offered will include Jehovah’s Witness patients needing kidney transplants, a transgender adolescent wanting his sperm preserved, care providers’ deciding whether to disclose that a deceased organ donor had HIV, and care providers seeking to do good (...) for children profoundly impaired and adults who feel shame for just existing. (shrink)

This article provides an introduction to a special issue of the journal Philosophy, Psychiatry and Psychology, On Understanding and Explaining Schizophrenia. The article identifies a common thread running through the different contributions to this special issue, inspired by Jaspers's (1963) suggestion that a profound impairment in the ability to engage in interpersonal and social relations is a key factor in psychiatric disorders. It is argued that this suggestion can help solve a central dilemma in psychopathology, which is to (...) make intelligible the emergence and nature of psychiatric phenomena involving disturbances of rationality, intentionality and self-consciousness, whilst at the same time accounting for a sense in which such phenomena resist understanding. (shrink)

We develop a philosophical interpretation of altered experience in conditions of severe unipolar depression. Drawing on phenomenological analysis, on published depression memoires and on a recent questionnaire study with patients in Britain, we hold that depression is a profound impairment of agency. Its experiential core consists in a paralyzing loss of drive and energy, a suspension of initiative, an inability to adopt a stance and act in accordance with it. Moreover, we show that experiences such as a loss (...) of self and world, altered interpersonal relatedness, modified corporeal experience as well as marked changes in the experience of time go along with the loss of agency. In order to assess their broader philosophical significance, we relate our analyses to an almost forgotten philosophical discussion: that of the term Selbstgefühl in 19th century German philosophy and early psychiatry. We also briefly discuss recent debates about the alleged historical and cultural specificity of depression. (shrink)

This article asks whether being a child is, all things considered, good or bad for children. I defend a predicament view of childhood, which regards childhood as bad overall for children. I argue that four features of childhood make it regrettable: impaired capacity for practical reasoning, lack of an established practical identity, a need to be dominated, and profound and asymmetric vulnerability. I consider recent claims in the literature that childhood is good for children since it allows them to (...) enjoy special goods that aren't available in adulthood, or which are harder to access in adulthood. I raise some difficulties for these claims. Then I argue that whatever version of these views survives my criticism will not establish that childhood is overall good for children. This is because the goods of childhood aren't significant enough to outweigh the bad features associated with being a child. I conclude by suggesting that the badness of childhood for children means that we are likely to owe more to children than to adults. (shrink)

Some researchers and autistic activists have recently suggested that because some ‘autism-related’ behavioural atypicalities have a function or purpose they may be desirable rather than undesirable. Examples of such behavioural atypicalities include hand-flapping, repeatedly ordering objects (e.g., toys) in rows, and profoundly restricted routines. A common view, as represented in the Diagnostic and Statistical Manual of Mental Disorders (DSM) IV-TR (APA, 2000), is that many of these behaviours lack adaptive function or purpose, interfere with learning, and constitute the non-social behavioural (...) dysfunctions of those disorders making up the Autism Spectrum. As the DSM IV-TR continues to be the reference source of choice for professionals working with individuals with psychiatric difficulties, its characterization of the Autism Spectrum holds significant sway. We will suggest Extended Mind and Enactive Cognition Theories, which theorize that mind (or cognition) is embodied and environmentally embedded, as coherent conceptual and theoretical spaces within which to investigate the possibility that certain repetitive behaviours exhibited by autistics possess functions or purposes that make them desirable. As lenses through which to re-examine ‘autism-related’ behavioral atypicalities, these theories not only open up explanatory possibilities underdeveloped in the research literature, but also cohere with how some autistics describe their own experience. Our position navigates a middle way between the view of autism as understood in terms of impairment, deficit and dysfunction and one that seeks to de-pathologize the Spectrum. In so doing we seek to contribute to a continuing dialogue between researchers, clinicians and self- or parent advocates. (shrink)

In this paper, we explore three separate questions that are relevant to assessing the prudential value of life in infants with severe life-limiting illness. First, what is the value or disvalue of a short life? Is it in the interests of a child to save her life if she will nevertheless die in infancy or very early childhood? Second, how does profound cognitive impairment affect the balance of positives and negatives in a child’s future life? Third, if the (...) life of a child with life-limiting illness is prolonged, how much suffering will she experience and can any of it be alleviated? Is there a risk that negative experiences for such a child will remain despite the provision of palliative care? We argue that both the subjective and objective components of well-being for children could be greatly reduced if they are anticipated to have a short life that is affected by profound cognitive impairment. This does not mean that their overall well-being will be negative, but rather that there may be a higher risk of negative overall well-being if they are expected to experience pain, discomfort, or distress. Furthermore, we point to some of the practical limitations of therapies aimed at relieving suffering, such that there is a risk that suffering will go partially or completely unrelieved. Taken together, these considerations imply that some life-prolonging treatments are not in the best interests of infants with severe life-limiting illness. (shrink)

This paper critically examines whether patients with severe brain injury, who can only communicate through assistive neuroimaging technologies, may permissibly participate in medical decisions. We examine this issue in the context of a unique case study from the Brain and Mind Institute at the University of Western Ontario. First, we describe how the standard approach to medical decision making might problematically exclude patients with communication impairments secondary to severe brain injury. Second, we present a modified approach to medical decision making. (...) We argue that this approach might warrant the inclusion of some patients with severe brain injury in low-stakes decisions, or to express preferences. Third, we present a model of supported decision making to address recalcitrant uncertainty. We conclude by suggesting that the modified approach to decision making and supported decision making might allow a patient with severe brain injury to participate in some medical decisions. Our analysis is provisional and has not yet been implemented in practice. Our discussion is intended to generate further debate on approaches to enhancing autonomy in patients with profound motor and cognitive impairments. (shrink)

While nothing justifies atrocity, many perpetrators manifest cognitive impairments that profoundly degrade their capacity for moral judgment, and such impairments, we shall argue, preclude the attribution of moral responsibility.

Are there key respects in which character and character defects are voluntary? Can agents with serious vices be rational agents? Jonathan Jacobs answers in the affirmative. Moral character is shaped through voluntary habits, including the ways we habituate ourselves, Jacobs believes. Just as individuals can voluntarily lead unhappy lives without making unhappiness an end, so can they degrade their ethical characters through voluntary action that does not have establishment of vice as its end. Choosing Character presents an account of ethical (...) disability, expanding the domain of responsibility and explicating the role of character in ethical cognition. Jacobs contends that agents become ethically disabled voluntarily when their habits impair their ability to properly appreciate ethical considerations. Such agents are rational, responsible individuals who are yet incapable of virtuous action. The view develops and modifies Aristotelian claims concerning the fixity of character. Jacobs' interpretation is developed in contrast to the overlooked work of Maimonides, who also used Aristotelian resources but argued for the possibility of character change. The notion of ethical disability has profound ramifications for ethics and for current debates about blame and punishment. (shrink)

This chapter is devoted to reflecting on the role of empathy in interactions with people with profound intellectual disabilities. We have a duty to respect people with intellectual disabilities. Respect involves identification with a point of view. We owe them an effort at identification with their perspective. However, if intellectually disabled people’s communicative abilities are impaired, our apprehension of their point of view might be limited, reducing our ability to identify with them and respect them. To answer this challenge, (...) I appeal to empathy. Through imaginative empathy, we can learn to identify with their perspectives. I argue that empathy is a good moral guide and can be helpful in developing respectful attitudes toward people with profound intellectual disabilities. (shrink)

In this article, I present an argument that suggests neuroscience should inform judgments of decision-making capacity. First, I review key behavioral and neurocognitive data to demonstrate that neuroscientific tests might be predictive of decision-making capacity, and that these tests might inform clinical judgments of capacity. Second, I argue that, consistent with the principles of autonomy and justice, such data should inform judgements of decision-making capacity. While the neuroscience of decision-making capacity still requires time to mature, there is strong reason to (...) believe that neuroscience might assist clinicians in adjudicating difficult cases in the future. This article focuses on the assessment of capacity in brain injury patients who have profound communication impairments, however, the overarching aim of the article is to highlight the potential use of neuroscience to improve our understanding of the relationship between cognition and decision-making capacity. (shrink)

Obtaining consent for medical treatment in older adults raises a number of complex challenges. Despite being required by ethics and the law, consent for medical treatment is not always validly sought in this population. The dynamic nature of capacity, particularly in individuals who have dementia or other cognitive impairments, adds complexity to obtaining consent. Further challenges arise in ensuring that older people comprehend the medical treatment information provided and that consent is not vitiated by coercion or undue influence. Existing mechanisms (...) to address issues surrounding consent for older adults only address incapacity and raise further challenges. As the ageing population increases, these issues are likely to become more profound, thus action is required to address these challenges. Raising awareness, more education, engaging with people with dementia, and conducting further research would assist in beginning to overcome these challenges. (shrink)

The locked-in syndrome is a state of profound paralysis with preserved awareness of self and environment who typically results from a brain stem stroke. Although patients in LIS have great difficulty communicating, their consciousness, cognition, and language usually remain intact. Medical decision-making by LIS patients is compromised, not by cognitive impairment, but by severe communication impairment. Former systems of communication that permitted LIS patients to make only “yes” or “no” responses to questions was sufficient to validate their (...) consent for simple medical decisions but not for consequential medical decisions such as whether to refuse further life-sustaining therapy. Emerging technologies including computer-tracking assistance of retained partial motor function and brain-computer interfaces promise to improve the communication ability of LIS patients and, when better developed, will allow them to fully exercise their right to actively participate in consequential medical decisions about their own medical care. Although so-called “covert cognition” patients clinically diagnosed as vegetative state that are shown to be aware by functional neuroimaging maybe metaphorically considered locked-in, it is nosologically more coherent not to categorize them formally as LIS. (shrink)

Disorders of consciousness (DOC) raise profound scientific, clinical, ethical, and philosophical issues. Growing knowledge on fundamental principles of brain organization in healthy individuals offers new opportunities for a better understanding of residual brain function in DOCs. We here discuss new perspectives derived from a recently proposed scheme of brain organization underlying consciousness in healthy individuals. In this scheme, thalamo-cortical networks can be divided into two, often antagonistic, global systems: (i) a system of externally oriented, sensory-motor networks (the ‘‘extrinsic’’ system); (...) and (ii) a system of inward-oriented networks (the ‘‘intrinsic’’ or default system). According to this framework, four distinct mental states would be possible that could be relevant for understanding DOCs. In normal healthy volunteers and locked-in syndrome patients, a state of high functionality of both the extrinsic and intrinsic or default systems is expected — associated with full awareness of environment and self. In this case, mental imagery tasks combined with fMRI can be used to detect covert awareness in patients that are unable to communicate. According to the framework, two complementary states of system imbalance are also possible, in which one system is in a hyperfunctional state, while the other is hypoactive. Extrinsic system hyperfunction is expected to lead to a state of total sensory-motor ‘‘absorption’’ or ‘‘lost self.’’ In contrast, intrinsic or default system hyperfunction is expected to lead to a state of complete detachment from the external world. A state where both extrinsic and intrinsic systems are hypofunctional is predicted to lead to markedly impaired consciousness as seen in DOCs. Finally, we review the potential use of ultra-slow fluctuations in BOLD signal as a tool for assessing the functional integrity of extrinsic and intrinsic systems during ‘‘resting state’’ fMRI acquisitions.. (shrink)

In this article, I present an argument that suggests neuroscience should inform judgments of decision-making capacity. First, I review key behavioral and neurocognitive data to demonstrate that neuroscientific tests might be predictive of decision-making capacity, and that these tests might inform clinical judgments of capacity. Second, I argue that, consistent with the principles of autonomy and justice, such data should inform judgements of decision-making capacity. While the neuroscience of decision-making capacity still requires time to mature, there is strong reason to (...) believe that neuroscience might assist clinicians in adjudicating difficult cases in the future. This article focuses on the assessment of capacity in brain injury patients who have profound communication impairments, however, the overarching aim of the article is to highlight the potential use of neuroscience to improve our understanding of the relationship between cognition and decision-making capacity. (shrink)

Welfare subjectivists face a dilemma. On the one hand, traditional subjectivist theories—such as the desire-fulfillment theory—are too permissive to account for the well-being of typical mature human beings. On the other hand, more “refined” theories—such as the life-satisfaction theory—are too restrictive to account for the well-being of various welfare subjects, including newborns, those with profound cognitive impairments, or non-human animals. This paper examines a class of welfare subjectivism that addresses this dilemma with sensitivity to the diversity in welfare subjects. (...) First, the most-sophisticated-attitude view (MSA) is introduced. MSA holds that an object, x, is good for a subject, S, in proportion to the strength of S’s pro-attitude towards x if and only if the pro-attitude at issue is S’s most sophisticated type. Typically, the well-being of typical mature human beings is assessed in terms of one’s authentic whole-life satisfaction, whereas that of human newborns is assessed in terms of something less sophisticated such as pleasure. MSA offers the rationale for this difference based on an underexplored version of perfectionism: procedural perfectionism. Next, provided that MSA may involve an implausibly strong claim, this paper examines two moderate variations of MSA that accept the partial relevance of less sophisticated types of valenced attitude. Finally, it is illustrated how MSA and its variations have plausible implications regarding the well-being of enhanced or dis-enhanced people. (shrink)

Functional imaging studies of neurologically intact adults have demonstrated that the right posterior cerebellum is activated during verb generation, semantic processing, sentence processing, and verbal fluency. Studies of patients with cerebellar damage converge to show that the cerebellum supports sentence processing and verbal fluency. However, to date there are no patient studies that investigated the specific importance of the right posterior cerebellum in language processing, because: case studies presented patients with lesions affecting the anterior cerebellum, and group studies combined patients (...) with lesions to different cerebellar regions, without specifically reporting the effects of right posterior cerebellar damage. Here we investigated whether damage to the right posterior cerebellum is critical for sentence processing and verbal fluency in four patients with focal stroke damage to different parts of the right posterior cerebellum. We examined detailed lesion location by going beyond common anatomical definitions of cerebellar anatomy, and employed a recently proposed functional parcellation of the cerebellum. All four patients experienced language difficulties that persisted for at least a month after stroke but three performed in the normal range within a year. In contrast, one patient with more damage to lobule IX than the other patients had profound long-lasting impairments in the comprehension and repetition of sentences, and the production of spoken sentences during picture description. Spoken and written word comprehension and visual recognition memory were also impaired, however, verbal fluency was within the normal range, together with object naming, visual perception and verbal short-term memory. This is the first study to show that focal damage to the right posterior cerebellum leads to language difficulties after stroke; and that processing impairments persisted in the case with most damage to lobule IX. We discuss these results in relation to current theories of cerebellar contribution to language processing. Overall, our study highlights the need for longitudinal studies of language function in patients with focal damage to different cerebellar regions, with functional imaging to understand the mechanisms that support recovery. (shrink)

Transfer RNAs (tRNAs) represent the most abundant class of RNA molecules in the cell and are key players during protein synthesis and cellular homeostasis. Aberrations in the extensive tRNA biogenesis pathways lead to severe neurological disorders in humans. Mutations in the tRNA splicing endonuclease (TSEN) and its associated RNA kinase cleavage factor polyribonucleotide kinase subunit 1 (CLP1) cause pontocerebellar hypoplasia (PCH), a heterogeneous group of neurodegenerative disorders, that manifest as underdevelopment of specific brain regions typically accompanied by microcephaly, profound (...) motor impairments, and child mortality. Recently, we demonstrated that mutations leading to specific PCH subtypes destabilize TSEN in vitro and cause imbalances of immature to mature tRNA ratios in patient‐derived cells. However, how tRNA processing defects translate to disease on a systems level has not been understood. Recent findings suggested that other cellular processes may be affected by mutations in TSEN/CLP1 and obscure the molecular mechanisms of PCH emergence. Here, we review PCH disease models linked to the TSEN/CLP1 machinery and discuss future directions to study neuropathogenesis. (shrink)

In this essay I engage the perspective of film phenomenology to analyze the black screen as a frame-breaking negative experience, based on an understanding of cinema as event. Relying on Vivian Sobchack’s phenomenological approach and taking inspiration from Cecil M. Hepworth’s How It Feels to Be Run Over, a case in point for a method predicated on the question of “how,” I place emphasis on the “film’s body” and consciousness which, through its own paralysis and impairment, affects the spectator’s (...) lived-body. Following the terminology of sociologist Erving Goffman, I approach both a car accident at the turn of the twentieth century and 9/11 on the cusp of the new millennium as frame-breaking events that generate a profound negative experience. I then describe the black screen in 9/11 films as a frame-breaking occurrence that creates a negative event in its own right. The encounter with the breakage of the conventional mechanisms and modes of the “film’s body” as well as the forced sensory shift lead the spectator to a heightened awareness of his/her own body as a receiving medium that empathetically partakes in the experience of a negative event at the scene of cinema, both perceptually and reflexively. (shrink)

In June 2021, the BMA published its report on moral distress and moral injury in UK doctors.1 The report includes definitions of the terms ‘moral distress’ and ‘moral injury’ as well as a summary of how the concepts have developed over time. There is also an analysis of the BMA’s pan-profession survey of moral distress and moral injury of doctors in the UK, the first of its kind. The impact of COVID-19 and recommendations for tackling moral distress also feature. Many (...) may be unfamiliar with the concepts of ‘moral distress’ and ‘moral injury’. These terms are relatively new, and debate is ongoing in academic circles on the best way to understand them.2 Some use the terms interchangeably. The BMA defines moral distress as the psychological unease generated where professionals identify an ethically correct action to take but are constrained in their ability to take that action. Even without an understanding of the morally correct action, moral distress can arise from the sense of a moral transgression. More simply, it is the feeling of unease stemming from situations where institutionally required behaviour does not align with moral principles. This can be as a result of a lack of power or agency, or structural limitations, such as insufficient staff, resources, training or time. The individual suffering from moral distress need not be the one who has acted or failed to act; moral distress can be caused by witnessing moral transgressions by others. Moral injury can arise where sustained moral distress leads to impaired function or longer-term psychological harm. Moral injury can produce profound guilt and shame, and in some cases also a sense of betrayal, anger and profound ‘moral disorientation’. It has also been linked to severe mental health issues. There is increasing recognition across the UK of the problem …. (shrink)

Atypical sensorimotor developmental trajectories greatly contribute to the profound heterogeneity that characterizes Autism Spectrum Disorders. Individuals with ASD manifest deviations in sensorimotor processing with early markers in the use of sensory information coming from both the external world and the body, as well as motor difficulties. The cascading effect of these impairments on the later development of higher-order abilities underlines the need for interventions that focus on the remediation of sensorimotor integration skills. One of the promising technologies for such (...) stimulation is Immersive Virtual Reality. In particular, head-mounted displays have unique features that fully immerse the user in virtual realities which disintegrate and otherwise manipulate multimodal information. The contribution of each individual sensory input and of multisensory integration to perception and motion can be evaluated and addressed according to a user’s clinical needs. HMDs can therefore be used to create virtual environments aimed at improving people’s sensorimotor functioning, with strong potential for individualization for users. Here we provide a narrative review of the sensorimotor atypicalities evidenced by children and adults with ASD, alongside some specific relevant features of IVR technology. We discuss how individuals with ASD may interact differently with IVR versus real environments on the basis of their specific atypical sensorimotor profiles and describe the unique potential of HMD-delivered immersive virtual environments to this end. (shrink)

Emotion recognition skills and the ability to understand the mental states of others are crucial for normal social functioning. Conversely, delays and impairments in these processes can have a profound impact on capability to engage in, maintain, and effectively regulate social interactions. Therefore, this study aimed to compare the performance of 42 autistic children, 45 unaffected siblings, and 41 typically developing controls on the Affect Recognition and Theory of Mind subtests of the Developmental Neuropsychological Assessment Battery. There were no (...) significant differences between siblings and TD controls. Autistic children showed significantly poorer performance on AR when compared to TD controls and on TOM when compared to both TD controls and unaffected siblings. An additional comparison of ASD, unaffected sibling and TD control subsamples, matched on full-scale IQ, revealed no group differences for either AR or TOM. AR and TOM processes have received less research attention in siblings of autistic children and remain less well characterized. Therefore, despite limitations, findings reported here contribute to our growing understanding of AR and TOM abilities in siblings of autistic children and highlight important future research directions. (shrink)

It has been shown that various types of stress initiate different physiological and neuroendocrine disorders. Oxytocin is mainly produced in the supraoptic nucleus and paraventricular nucleus of the hypothalamus. Hypothalamic OT has antistress effects and attenuates the hypothalamic–pituitary–adrenal axis. One mechanism behind the antistress effects of OT is mediated through the inhibition from GABAA receptors on corticotropin-releasing factor expression at the PVN. Various manual therapies such as acupuncture, transcutaneous electrical nerve stimulation, and massage initiate the stimulation of somatosensory neurons of (...) the body. It is well-known that TENS simulates OT expression, while it inhibits CRF expression at the PVN following chronic stress loading in rodents. Upregulation of OT expression at the hypothalamus is activated by the somatosensory stimulation, which is mediated via the spinothalamic pathway. Thus, somatosensory stimulation is beneficial in treating stress-associated symptoms. Hypothalamic OT is associated with the social behaviors, including maternal care and affiliation. Childhood neglect and/or child abuse are severely responsible for deleterious long-term effects on the cognitive/social activity and behavioral development. At parturition, a profound amount of OT is released into the systemic circulation in response to vaginal and cervical stimulation caused by the body of fetus, which induces the onset of maternal behavior. Peridural anesthesia effectively impairs the sensitivity to vaginal and cervical stimulation at parturition. OT levels in cerebrospinal fluid is significantly reduced following peridural anesthesia. The vaginal delivery mothers had significantly more OT pulses than the caesarian section mothers. Due to low levels of endogenous OT, maternal behavior could be interrupted by epidural anesthesia and CS at parturition because of the reduction of the usual sensory input from the genitalia. (shrink)

Understanding aging and how it affects an organism's lifespan is a fundamental problem in biology. A hallmark of aging is stem cell senescence, the decline of functionality, and number of somatic stem cells, resulting in an impaired regenerative capacity and reduced tissue function. In addition, aging is characterized by profound remodeling of the immune system and a quantitative decline of adequate immune responses, a phenomenon referred to as immune‐senescence. Yet, what is causing stem cell and immune‐senescence? This review discusses (...) experimental studies of potentially immortal Hydra which have made contributions to answering this question. Hydra transcription factor FoxO has been shown to modulate both stem cell proliferation and innate immunity, lending strong support to a role of FoxO as critical rate‐of‐aging regulator from Hydra to human. Constructing a model of how FoxO responds to diverse environmental factors provides a framework for how stem cell factors might contribute to aging. (shrink)

The character and extent of disabilities, especially cognitive disability, have posed significance problems for existing moral theories. Certain philosophers have even questioned the moral personhood of people with disabilities and have argued that people with profound cognitive impairments should not be granted the same moral status as those who are cognitively able-bodied. This paper proposes an alternative understanding of moral personhood as relational rather than individuated. This relational moral personhood finds its foundation in the clinical practice and psychoanalysis of (...) Julia Kristeva and the hermeneutic narrative identity of Paul Ricoeur. One consequence of this relational personhood is a new understanding of moral status through narrative co-authorship rather than intellectual or social capacity. Another consequence is a refiguration of narrative identity as narrative interdependence. (shrink)

In the lead article in the May‐June 2019 issue of the Hastings Center Report, Aaron Wightman and coauthors consider the guiding principles for making decisions about life‐sustaining treatment for children who have profound cognitive impairments. They argue that the usual standard, which asks decision‐makers to consider what will be in the child's best interests, cannot provide sufficient guidance. Discussing this problem in HCR thirty‐five years ago, the philosopher John Arras proposed addressing it by means of a “relational potential standard,” (...) according to which decisions about providing life‐sustaining treatment to a child should depend in part on whether the child has the capacity to form human relationships. Wightman et al. build on Arras's work, but where Arras had suggested that the capacity to form relationships could be gauged by examining the child's cognitive capabilities, the authors suggest that the medical team should lean heavily on the parents’ views. (shrink)