The hashtag #RepresentationMatters is widely used among disability activists on social media because disabled people are often simply ignored in popular culture. Several disabled characters inhabit the Avatar: The Last Airbender universe, but Toph Beifong is the most prominent. Toph is a major character who plays an essential role in the victory over the Fire Nation's imperialism. A rarity in media, Toph's character has as much depth as any member of Team Avatar. The “Irrationally and Infectiously Happy Disabled Person” (...) is a master narrative that contrasts with Disabled Person Better Off Dead, but which is also damaging to disabled people. Barnes argues that hermeneutical injustice appears when disabled people try but fail to make sense of their experience of flourishing with a disability because it is so commonly assumed that disability consigns a person to a horrific, tragic fate. (shrink)

In early modern theories of ‘proper’ style, ambiguously, difficulty could convey a sense of excellence on one hand (of national belonging, imperial ambition or manly ‘virility’) while also being deployed to denigrate unseemly (too feminine or foreign) speech. Difficulty erupts precisely in the points of friction: when boundaries around ablebodymindedness are drawn or when the available forms of expression are insufficient. Instead of eradicating difficulty altogether, I sift through early modern French, English and Italian writing on rhetoric to make a (...) case for paying closer attention to difficulty, lingering with it, and seeing what these friction points ultimately reveal. The contemporary concept of ‘disability gain’ posits disability not as a defect to be remedied, erased or cured, but rather as a mode of being in the world that allows for innovation, creativity and even added affects, resources or alternative epistemologies. Instead of considering, in the pedagogical domain, how to construct conceptual ‘on-ramps’ for simplifying difficulty, what would we gain by leaning into the unclear, uncertain and potentially joyful ‘other’ forms of communication itself, such as dysfluency, stuttering or Remi Yergeau’s concept of the rhizomatic neuroqueer? (shrink)

“Discrimination on the grounds of disability is seldom malicious, but stems more from a lack of understanding.” A disabled businessman explores the need for businesses to cultivate and implement greater disability awareness. After graduating in engineering, he gained his MBA from London Business School in 1992. He now works as a consultant, capitalising on his background in business management and his personal experience of disability to assist clients in developing anti‐discriminatory policies and practice.

The diagnosis of idiopathic short stature refers to children who are considerably shorter than average without any identified medical reason. The US Food and Drug Administration authorised marketing of recombinant human growth hormone for ISS in 2003, while the European Medicines Agency refused it in 2007. This paper examines the arguments for these decisions as detailed in selected FDA and EMA documents. It combines argumentative analysis with an approach to policy analysis called ‘What’s the problem represented to be’. It argues (...) that the FDA presents its approval as an argument for equity of access to the treatment, describing short stature as a potential disadvantage, and assuming that height normalisation is a clinically meaningful result. The EMA, instead, refuses marketing authorisation with an argument that there is an imbalance of risks and benefits, describing ISS as a healthy condition, and arguing that hGH should provide some psychosocial and/or quality of life benefits to children with ISS other than height gain. This paper then discusses how these arguments could be read through different models of disability, particularly through the medical model of disability and the relational, experiential, and cultural understandings of disability. (shrink)

Health policymakers employ utility measures to inform resource allocation decisions. They often rely on a conceptual tool called the quality-adjusted life year that discounts the value of years lived in a state of disability relative to years lived in full health. A representative sample of the general public is asked to place values on hypothetical health states as part of a standard gamble or time trade-off task. Policymakers use the resulting values to calculate the number of QALYs gained through (...) particular interventions. Utilitarian reasoning mandates that policymakers maximize QALYs gained per unit cost.Although many scholars have explored the problems of distributive justice that arise from this system... (shrink)

The learning disability construct gained scientific and political legitimacy in the United States in the 1960s as an explanation for some forms of childhood learning difficulties. In 1975, federal law incorporated learning disability into the categorical system of special education. The historical and scientific roots of the disorder involved a neuropsychological discourse that often conflated lower social class identity and learning disability. Lower class, often urban, families were viewed as providing insufficient intellectual stimulation for their young children, (...) thereby causing learning problems. This paper undertakes a historical analysis of a particular form of this class-based political discourse—romantic agrarianism—developed by leading learning disability researchers Newell Kephart and Marianne Frostig in the 1960s. (shrink)

Both Heidegger's Being and Time and Helen Keller's The Story of my Life address the problem of what it means for humans to be optimally human. In reading these texts together, I hope to show that Helen's life-story confirms Heidegger's existential analyses to some extent, but also, importantly, poses a challenge to them with respect to the interrelated issues of disability, language and others. Heidegger's hermeneutic explication of what it means to be human is intended to uncover supposedly basic (...) human existential structures. As a fore-structure for this explication, Heidegger projects an already able-bodied, self-sufficient adult, resolutely engaged in daily activity. I shall argue, however, that it is due to this starting-point in adult-Dasein that Heidegger's existential analyses miss important insights concerning the meaning of being human to be gained from Helen's experience. Starting from the essentially disabled child-Dasein, Helen describes her struggle to achieve the very condition that Heidegger assumes from the start, first through rescue by the other as teacher, who offered the gift of language and community, and thereafter in her grasp of language as a “pharmakon.” I hope to show in the end that Helen's experience of a struggle for humanity offers the model for an alternative projection, that of an essentially disabled and needy Dasein, which, I believe, provides a more viable fore-structure than Heidegger's for a hermeneutics of humanity. S. Afr. J. Philos. Vol.22(1) 2003: 98-112. (shrink)

Brain–Computer Interface research is an interdisciplinary area of study within Neural Engineering. Recent interest in end-user perspectives has led to an intersection with user-centered design. The goal of user-centered design is to reduce the translational gap between researchers and potential end users. However, while qualitative studies have been conducted with end users of BCI technology, little is known about individual BCI researchers’ experience with and attitudes towards UCD. Given the scientific, financial, and ethical imperatives of UCD, we sought to (...) class='Hi'>gain a better understanding of practical and principled considerations for researchers who engage with end users. We conducted a qualitative interview case study with neural engineering researchers at a center dedicated to the creation of BCIs. Our analysis generated five themes common across interviews. The thematic analysis shows that participants identify multiple beneficiaries of their work, including other researchers, clinicians working with devices, device end users, and families and caregivers of device users. Participants value experience with device end users, and personal experience is the most meaningful type of interaction. They welcome end-user input, but are skeptical of limited focus groups and case studies. They also recognize a tension between creating sophisticated devices and developing technology that will meet user needs. Finally, interviewees espouse functional, assistive goals for their technology, but describe uncertainty in what degree of function is “good enough” for individual end users. Based on these results, we offer preliminary recommendations for conducting future UCD studies in BCI and neural engineering. (shrink)

One of the insights gained from editing a journal is to see early trends in the research topics of submissions. The ethics of data management in healthcare is an issue on which we have published a...

In lieu of an abstract, here is a brief excerpt of the content:A Third Way: Social Disability and Person-Centered AssessmentChristopher Heginbotham (bio)Keywordsimpaired functioning, psychopathic, personality disorder, neurological damage, psychotherapyJohn Sadler’s Fascinating Paper identifies a significant problem with existing diagnostic classifications. But in doing so he raises further unresolved philosophical, nosological, and practical problems. Although he is undoubtedly right in showing that the Diagnostic and Statistical Manual of Mental Disorders (DSM)-IV (and International Classification of Diseases [ICD]-10) do not provide an (...) adequate categorization, he is I believe wrong to use the term “vice” to describe the cluster of wrongful acts.“Vice” conjures up images of Miami, drugbusting police, prostitution, and other activities that are characterized by one thing—by and large, these are actions undertaken knowingly, usually for financial gain. These are not the actions of people with impaired mental functioning as a result of mental disorder or neurological damage. It is of course true that human trafficking and enforced prostitution may mean women forced into prostitution against their will, but rarely are these women considered mentally disordered solely as a result of their prostitution. Yet it is capacitated, premeditated wrongdoing that is normally considered to be “vice.”By contrast, all the cases cited in the paper describe conditions that are almost certainly the result of some form of impaired functioning, either owing to early childhood experiences (Case A), familial culture and conditioning (Case B), or neurological damage (Case C). The common thread in these cases is impaired capacity—in Case A this could be described as due to psychopathic or personality disorder (I distinguish the two separately rather than describe the phenomenon as “psychopathic personality disorder”) as a result of multiple childhood traumas. Their presentation is not unexpected given the person’s history and, although the condition may have become refractory, it might be amenable to treatment with psychoanalytically oriented psychotherapy, given sufficient time and a nurturing environment (Bateman and Fonagy 2006, 2008; Cordess and Cox 1996; Levy 2008).The description of Case B leaves a lot of room for doubt and uncertainties. Did Ms A really try to smother her child? She confessed to one occasion, but was this under duress? Did she feel that if she agreed she would be treated more leniently? And if she was guilty, does it suggest “vice,” a premeditated act, or is there another explanation—attention [End Page 31] seeking because of low self-esteem or a personality disorder as a result of some abuse that had not been identified? Almost certainly from the description given this would not count, for me at any rate, as vice. Her actions may be odd, bizarre, or dangerous, but did they demonstrate a mens rea? Was Ms A making adequate evaluative judgments of her situation and that of her child? We know from clinical work with very damaged women in forensic mental health services that early physical, emotional, or sexual abuse leads in turn to women harming both themselves and their children (Bland et al. 1999; Cordess and Cox 1996; see also for example, Jeffcote and Watson 2004). Or perhaps, speculatively, her condition was Munchausen’s by proxy?Case C is horrendous but does not lend itself readily to the forms of psychiatric classification available. Indeed there is no easy way to describe such actions other than those of someone who is either incapable of understanding the nature and consequence of the actions that he has undertaken, or is simply “mad” in a folk sense. Prima facie this seems to be the result of permanent and little understood neurological damage. However, this case comes closest to the evil that is implied in the term “vice”; and might be diagnosed similarly to a celebrated English murderer, that of Peter Sutcliffe, the so-called Yorkshire Ripper. Sutcliffe was diagnosed as suffering from paranoid schizophrenia, although the jury at his trial found that he was fit to plead, and he was initially sent to prison, where he deteriorated. He is now, and has for some time, been in Broadmoor high secure hospital.The result of these comments is that I agree fully with John Sadler’s conclusions, but for rather different reasons. DSM-IV categories try and fail to offer a symptomatology for... (shrink)

This article draws attention to the ethical complexity researchers may be confronted with during fieldwork should an adult participant with intellectual disabilities disclose that harm or an illegal activity is occurring or has occurred in the past. The need to gain ethical approval and the positioning of people with intellectual disabilities as vulnerable within ethics review procedures can result in the adoption of paternalistic approaches as researchers are encouraged to break confidentiality to report concerns to other professionals. Whilst this (...) may fulfil a researcher’s duty to ensure no harm occurs to participants, if it takes place against the participant’s wishes it may also violate participant autonomy, reinforce unequal relations of power, and may unwittingly contribute to subsequent harm occurring. Whilst the article begins from our experience as two UK-based researchers working with people with intellectual disabilities, it draws on existing literature and guidelines to expose the ethical tensions which may be encountered. It is intended that the paper acts as a starting point for researchers wishing to reflect on their practice and ethical decision-making, whilst contributing to wider debates on the position of people with intellectual disabilities within society. (shrink)

Is Tom Shakespeare disabled, or simply distinct in stature? And if the latter, what makes that distinction important?For more than a decade, the British sociologist has been a critical voice in the sociology of difference. The son of a physician with achondroplasia “widely admired as a doctor and as a disabled role model” ,1 Shakespeare fils also has achondroplasia, is the father of children with the condition and, like his father, is professionally successful. As his book’s back cover announces, Shakespeare (...) has “taught and researched sociology at the Universities of Cambridge, Sunderland, Leeds, and Newcastle. He has written and broadcast extensively about disability and genetics, and his co-authored books include The Sexual Politics of Disability, Exploring Disability, and Genetic Politics.”This volume brings together a decade of papers that, Shakespeare says, “draws on my experience of being a disabled person, and the son, father, husband and friend of disabled people”1 to argue the following thesis: “Disability results from the interplay of individual and contextual factors. In other words, people are disabled by society and by their bodies.”1 That argument, he suggests, has resulted in the “breakdown of my relationship with the mainstream of the UK disabled people’s movement”, whose members advance a model of disability based wholly on social construction. Shakespeare sees that as simplistic and no longer viable despite of the extraordinary gains made by those seeking parity through advancement of the social construction thesis.1According to Shakespeare, his former confrères in the British disability movement see as a betrayal his rejection of their argument, one he formerly endorsed, and thus perhaps a repudiation of a generation of admittedly successful activism. To them, in other words, Shakespeare is no longer disabled but disabling, and that judgment must …. (shrink)

This chapter is about personhood in relation to ethics and to conciliar Christian theology, and how concepts of personhood may discriminate against profoundly cognitively disabled human beings. (By ‘conciliar Christian theology’ I mean the Christian theology that is articulated in, or endorsed by, the first seven ecumenical councils.) -/- I believe we can learn several things about personhood by looking at these two topics together. By examining ancient and medieval concepts of personhood and some modern conceptions of personhood we (...) class='Hi'>gain a better grasp of the variety of concepts and what substantive work they were intended to do. By becoming familiar with (part of) the history of concepts of personhood we are better situated to appreciate and judge the theoretical work that these concepts were intended to do and what consequences they have in ethical and theological theorizing. -/- In the first section I tell a select history of moral philosophers theorizing about personhood and discuss these in relation to human beings with profound cognitive disability. I focus on John Locke, Immanuel Kant, and Mary Anne Warren. In the “When Personhood Is Discriminatory” section I argue that concepts of personhood, especially modern concepts of personhood, are typically used in a manner that discriminates against human beings with profound cognitive disabilities. I give two arguments against discriminatory uses of personhood, the Moral Shift Argument and the Argument against Exclusive Personhood. Although the Moral Shift Argument is deductively valid, it probably has little persuasive power over those who do not share the moral belief that profoundly cognitively disabled human beings are equal members of the moral community. However, the Argument against Exclusive Personhood has more argumentative force because it denies the claims that personhood is “self-evident” and that it is “obvious” to everyone. In the following section I survey a select history of concepts of personhood in order to establish the claims that concepts of personhood are not self-evident and are not obvious to everyone. This history of personhood goes back to ancient and medieval Christian theorizing and debating about personhood. It shows that concepts of personhood are not “self-evident” but rather are theoretical posits that are posited in theory construction in order to explain certain putative theological facts. Given that personhood is a theoretical posit and is not “self-evident,” moral philosophers who aim to determine the extent of the moral community on the basis of a supposedly “self-evident” concept of personhood are not justified in doing so. Moreover, given the Argument against Exclusive Personhood, philosophical theologians who wish to articulate models of the Trinity or Incarnation that are consistent with the seven ecumenical councils will find that they, like moral philosophers, are not justified to assume, or to insist on, modern personhood for their models of the Trinity or Incarnation. My overall conclusion, then, is that modern personhood is bad for ethics and unnecessary for conciliar ecumenical Christian theology. (shrink)

This study utilized a multiple baseline design across two study skills to examine the impact of a self-monitoring checklist and follow-up performance feedback on the generalization of study skills for seven college students with disabilities. All training and follow-up support took place in a remedial college course. The accuracy of study skill use was analyzed to evaluate whether training gains occurred in a college level subject area different than the course in which the skills were taught in the absence of (...) teacher-guided stimuli and verbal prompts. Results provide evidence that relatively simple, classroom-based training and follow-up support markedly increased the accurate use of the notetaking and study guide skills immediately for three of the seven students. However, following a booster session, all but one student’s performance increased following intervention. Results were socially validated by students who indicated they were generally satisfied with the intervention and found it to be useful when studying for the college class. This type of training is critical because low retention rates in college programs are a likely outcome for students with disabilities when study skills are not used. (shrink)

This chapter is about personhood in relation to ethics and to conciliar Christian theology, and how concepts of personhood may discriminate against profoundly cognitively disabled human beings. (By ‘conciliar Christian theology’ I mean the Christian theology that is articulated in, or endorsed by, the first seven ecumenical councils.) -/- I believe we can learn several things about personhood by looking at these two topics together. By examining ancient and medieval concepts of personhood and some modern conceptions of personhood we (...) class='Hi'>gain a better grasp of the variety of concepts and what substantive work they were intended to do. By becoming familiar with (part of) the history of concepts of personhood we are better situated to appreciate and judge the theoretical work that these concepts were intended to do and what consequences they have in ethical and theological theorizing. -/- In the first section I tell a select history of moral philosophers theorizing about personhood and discuss these in relation to human beings with profound cognitive disability. I focus on John Locke, Immanuel Kant, and Mary Anne Warren. In the “When Personhood Is Discriminatory” section I argue that concepts of personhood, especially modern concepts of personhood, are typically used in a manner that discriminates against human beings with profound cognitive disabilities. I give two arguments against discriminatory uses of personhood, the Moral Shift Argument and the Argument against Exclusive Personhood. Although the Moral Shift Argument is deductively valid, it probably has little persuasive power over those who do not share the moral belief that profoundly cognitively disabled human beings are equal members of the moral community. However, the Argument against Exclusive Personhood has more argumentative force because it denies the claims that personhood is “self-evident” and that it is “obvious” to everyone. In the following section I survey a select history of concepts of personhood in order to establish the claims that concepts of personhood are not self-evident and are not obvious to everyone. This history of personhood goes back to ancient and medieval Christian theorizing and debating about personhood. It shows that concepts of personhood are not “self-evident” but rather are theoretical posits that are posited in theory construction in order to explain certain putative theological facts. Given that personhood is a theoretical posit and is not “self-evident,” moral philosophers who aim to determine the extent of the moral community on the basis of a supposedly “self-evident” concept of personhood are not justified in doing so. Moreover, given the Argument against Exclusive Personhood, philosophical theologians who wish to articulate models of the Trinity or Incarnation that are consistent with the seven ecumenical councils will find that they, like moral philosophers, are not justified to assume, or to insist on, modern personhood for their models of the Trinity or Incarnation. My overall conclusion, then, is that modern personhood is bad for ethics and unnecessary for conciliar ecumenical Christian theology. (shrink)

One widely used method for allocating health care resources involves the use of cost-effectiveness analysis (CEA) to rank treatments in terms of quality-adjusted life-years (QALYs) gained. CEA has been criticized for discriminating against people with disabilities by valuing their lives less than those of non-disabled people. Avoiding discrimination seems to lead to the ’QALY trap’: we cannot value saving lives equally and still value raising quality of life. This paper reviews existing responses to the QALY trap and argues that all (...) are problematic. Instead, we argue that adopting a moderate form of prioritarianism avoids the QALY trap and disability discrimination. (shrink)

The idea that disability insurers would benefit if the use of predictive genetic testing expands may seem little short of obvious. If individuals with higher than species-typical genetic propensities for illness or disease are identified, and barred or discouraged from participating in disability insurance programs, is it not obvious that the amount that disability insurers pay out will decrease? Is there any reason to doubt that insurers thus would gain advantage by promoting genetic testing? Writers on (...) this subject typically have taken on faith that advantage goes to whoever knows most about the genetic characteristics of the individual seeking insurance. They therefore have assumed, without proving, that insurers’ interests lie with proliferating genetic information about insurance seekers.Consequently, from a perspective that gives priority to commercial interests, denying insurers the freedom to obtain genetic information about insurance seekers or holders appears obviously damaging and even unfair. On the other hand, from a perspective that gives priority to the interests of citizens who may use insurance, the greater use of and access to predictive genetic testing sets off ethical alarms. (shrink)

One of the most significant economic challenges faced by people with disabilities in Turkey and globally is employment. Unfortunately, even in developed countries, the desired level of employment of the disabled individuals has not yet been measured up. The fundamental rights and freedoms of employment and labor have gained a basis of legitimacy through certain principles within the legal system throughout human history. As a matter of fact, in the main references of Islamic law, the principles of justice, rights, equality (...) of opportunity, merit, anti-discrimination, and social responsibility for all people in general and disabled people in particular have been a reference in the development of employment policies. In this regard, the main objective of Islamic economic policies has been determined as ensuring the happiness of the individual in this world and the hereafter since the early period. The study first includes active and passive employment models developed in modern legal systems. It can be stated in this framework that from the early period, both in the practices of the Prophet Muhammad and the Companions and in the later Islamic societies, institutionalization was provided according to the characteristics of the period in which disabled individuals were actively and passively employed, and it can be stated that the developments regarding the employment of disabled individuals in Islamic societies started much earlier than expected. However, we must admit that legal regulations in the modern sense were introduced later compared to the West. The study focuses on the phenomenon of disability, the problems and needs of the disabled, and the studies on employment in Islamic societies from the past to the present. It is determined that many disabled people in Islamic society are actively employed in state positions ranging from imam to judge, from commander to governor according to their abilities, and the disabled people who cannot be employed are compensated for their disadvantages through passive employment methods such as health, care, housing, salary binding, and tax reduction. Determining the principles of employment of disabled according to Islamic law is the main subject of the study, and it has been established that maslahah, custom, siyasa shar’iyya, merit, and sedd-i zerâi constitute the jurisprudential basis of the employment of the disabled in Islamic law. In this framework, it has been stated that the principle of maslahah plays a key role in the development of social responsibility policies, in resolving issues that are not included in verses and hadiths and furû fiqh acquis, in gaining the economic independence of disabled and ensuring the minimum standard of living. Maslahah is also beneficial for the individual, family, society and the state, too. It has been pointed out that the employment of disabled people has become one of the most significant matters of both national and international legal regulations today, and it has been determined that the employment of disabled people has transformed into customary practices in accordance with the criteria of being a source of Islamic law. In Islamic administrative law, active and passive employment policies, legal regulations, and institutional structures related to disabled are carried out by the authority delegated to public administrators under the siyasa shar'iyya. It has been emphasized that administrative and public service appointments in Islamic law are ordered to be made on the basis of merit, that nepotism and favoritism are prohibited, and that disability is not an obstacle to employment. In conclusion, the insufficiency of studies on employment of people with disabilities in Islamic law has been pointed out and it has been suggested that further studies should be carried out on these subjects and exploitation of disability according to Islamic law should be studied. (shrink)

In lieu of an abstract, here is a brief excerpt of the content: -/- I gathered it in my hands as it fell from my hair-brush, too saturated to hold anymore. It felt as if I were inside a movie and waiting for someone to yell “Cut!” but no call came. It continued to fall, feather-like onto the ground, individual strands glinting in the light of the bathroom window. My hair, nearly all of it, was gone. Between the time of (...) my heart transplant and the moment my hair began to fall out, I arguably had suffered enough. Transplant brought four open-heart surgeries, ten days on ECMO, an intra-aortic balloon pump, delirium, necrotizing pneumonia, and so much muscular atrophy that I had to re-learn how to walk. CPR, broken ribs, and the scar of a tricuspid clip from a botched biopsy: it was not the miracle I was hoping for. The internal trauma had certainly taken its toll. I no longer knew how I really felt, thanks to copious pain meds that altered my mind and body. Each limb was foreign as I re-acclimated to how one grabs hold of a cup, signs their name, touches their legs. Externally, I was a mess: covered in deep purple bruises across my torso from the diabetes treatments, dead skin pooling in unwashed pores, my ankles swollen and indiscernible from my legs. But lacking a good mirror (or the desire to find one), I still felt like “myself” during my forty-five day hospital stay. I could feel my cheekbones protruding from thinning skin, saw through unfocused eyes from the tempestuous blood sugars, and my hair sat in a rat’s nest atop my head; but I was still me. -/- Arriving home, I felt like a newborn being brought into the real world for the first time. I needed help with everything—showers, sitting up, putting on shoes, even going to the bathroom. At age twenty-four, I felt I had regressed to the point of no return as I relied on others to do the simplest tasks. In addition, I was quarantined inside for three months, due to the risk of obtaining a fungal infection from the outside. Caged, and alone in my body, I a trapped and wounded tiger: angry, hurting, and scared. [End Page 109]When I had been prepared for transplant—and I use “prepared” loosely because the information packet I was handed was insulting at best—I knew to expect the scars. I had no issue with that, having been cut open at my throat and chest for previous surgeries. I knew to expect a 12-inch line from neck to navel: the most evident sign I would now carry that I was disabled. -/- What I did not expect were the bullet holes— the sealed entrances of thick chest tubes that now dotted my lower torso. I did not anticipate the bruises on my arms and groin from arterial pokes. I felt violated as if I had walked into some kind of abduction and was rolled out, beaten, bruised, and, worst, touched. But it wasn’t the physical trauma that hurt the most. It was that no one seemed surprised. Immediately after transplant, the team’s focus is purely on survival. Survive the 30 days post-surgery. Survive the year. Metrics, uncomfortably tied to transplant center success statistics, funding, and clout have little to do with the patients themselves. What did I care to only survive a year? I wanted years. I wanted decades. It felt I wanted more than anyone was willing to pay attention to. -/- The conversation was narrowed to high-risk issues: infection, rejection, or other life-threatening conditions. While this makes sense on a clinical level, what constitutes a major event for a clinician may not be of the same emotional value to the patient. In my case, I was less occupied by how the steroids were working and more obsessed with their side effects, such as how much weight I was rapidly gaining. I walked into the clinic one day with the beginnings of stretch marks and a week later had claw-like ripples down my sides. My mood swings were explosive... (shrink)

Enhancing the quality of learning opportunities for students with disabilities and the learning level attained is a pending challenge. This challenge is especially relevant in the context of special schools, where the learning possibilities derived from interactions with others is limited. However, providing these students with a sufficient level of instrumental learning, such as literacy, and communicative and reasoning abilities is crucial for their subsequent educational and social opportunities. In this case study we analyse a special school that has implemented (...) Dialogic Literary Gatherings with their students as a means to increase learning interactions within the group around the reading and debate of classical books. Semi-structured interviews were conducted with the school principal and with a teacher of the transition to adult life course, and two focus groups were conducted with teachers–one with primary education teachers and one with secondary education teachers–and two focus groups with students–one with primary education students and one secondary education and transition to adult life students–. On the one hand, results show the characteristics of the Dialogic Literary Gatherings that allowed these students to participate and learn. On the other hand, several improvements have been observed. First, regarding instrumental learning, students increased their motivation for reading, and improved their communicative and reasoning abilities and in their reading proficiency. Second, regarding students' behavior, conflict has reduced, solidarity attitudes have increased, and they have acquired dialogic and argumentative habits. Finally, at the emotional level, they gained self-esteem and confidence and feel more empowered to make their voice heard. (shrink)

Elizabeth Barnes has recently developed an account of disability that is sensitive to the role of self-evaluation. To have a physical disability is, according to Barnes, to have a body that is merely different from the norm. Yet, as Barnes notes, some disabilities will genuinely frustrate some life plans. It may be the case, therefore, that a disability is instrumentally bad for a person and that acquiring one may be a genuine loss. Equally, however, a person may (...) genuinely value a disability such that it is instrumentally good for them and that they experience the acquiring of it as a gain. Notably, Barnes explicitly restricts this analysis to physical disabilities, leaving open the status of mental disabilities. Nevertheless, Barnes does not rule out the extension of her model to this category, and she expresses a desire to see future work on other disabilities built upon it. This article takes up this challenge, making the case that to possess a mental disability is merely to possess a minority mind. (shrink)

This brief paper shows that the idea of benefits to the subject compensating for the harms of disability is at best self defeating and at worst sinister. Equally benefits to third parties while real are dubious as compensating factors. This shows that disabilities are just that, a net loss and not a net gain.

The Human Genome Project has allowed researchers to gain new insights into the genetic causes of health and disease. With this knowledge comes the potential to develop new genetic tests that are capable of predicting the risk of disease or disability among presently healthy individuals. This information is potentially beneficial in that it may allow individuals to develop strategies to reduce their risk of illness and may allow health providers to recognize and treat the early stages of disease (...) more effectively. As knowledge about genetic contributions to disease continues to grow and genetic testing technology becomes more widespread, there is a risk that personal genetic information could be used in ways potentially concerning to consumers. Genetic testing technology could potentially be used to discriminate against individuals in terms of their ability to obtain health, life, and disability insurance. Decreased access to insurance, in turn, significantly hinders access to health care and income for oneself and/or for one's dependent. (shrink)

Due to the lockdown caused by the COVID-19 pandemic, e-learning suddenly spread to different levels of education, including university. In Spain, students of sports sciences are prepared during a 4-year study program to work in different areas and with different populations. The aims of this study were to assess the effect of pandemic-driven online teaching on self-efficacy for the inclusion of people with disabilities in a group of university students enrolled in a compulsory course on adapted physical activity ; compare (...) the gains from SE before and after the APA course with a sample of students who followed the same course before the pandemic; and explore the influence on SE scores according to three demographic variables: gender, previous SE training, and previous experience with people with disabilities. The study involved a sample of 124 university students, distributed into two groups: prepandemic and pandemic. They voluntarily completed the Spanish version of the Scale of Self-Efficacy of Physical Education Teachers of Physical Education toward Children with Disabilities, obtaining pre- and postcourse measurements. Due to the sudden lockdown, two-thirds of the pandemic course was taught online, and changes in the teaching strategies and tasks had to be made. Similar gains were obtained in both groups for the three subscales of the SE scale : intellectual, physical, and visual disability. No significant differences were found for comparisons between groups and the interaction effect of the course taught, nor for the three demographic co-variables. This study shows that teaching strategies that encourage student participation and reflections on learning increase student SE, regardless of the teaching format. Moreover, the gains in SE are invariable to demographic co-variables. (shrink)

Exploring the dynamics of power: A Foucauldian analysis of care planning in learning disabilities services This paper draws upon a study completed in 2000 that focused upon health and welfare provision for people with learning disabilities in one English county. This study drew upon the theoretical insights of Michel Foucault to provide an analysis of the micro politics of care planning. This involved the analysis of text from two sources: the academic literature and interview material gained from a number of (...) professionals working in health and welfare services for people with learning disabilities. Drawing upon this research material, the first part of this paper briefly explores the relationship between policy, professional practice and the people who are the subjects of that practice. The discussion then moves on to consider Foucault's five methodological precautions and the way power produces a localised web of activity that identifies specific targets for management. In this process power draws into the web a range of informal and formal practices that initially lie outside of the web. The discourse produced through the activity surrounding care planning provides the evidence of this flow of power. This discourse then takes on the status of science (truth), which reproduces this activity. (shrink)

In recent years, there has been a growing emphasis on researching quality of life,particularly within families that include members with disabilities. Family Quality ofLife (FQOL) has gained prominence in special education as researchers seek to understandand improve the well-being of these families. This study aims to present findingson the quality of life of parents raising children with disabilities.Using a quantitative research approach and the validated BCFQOL tool, wesurveyed 205 parents. The results were unexpectedly positive, showing generally higherlevels of quality of (...) life among participants. However, challenges were identified in specificdimensions such as “Emotional well-being,” and “Material well-being”. (shrink)

The purpose of this study was to investigate what strategies people with severe functional disabilities who receive personal assistance in their homes use in their daily life to achieve autonomy, integrity, influence and participation. Qualitative interviews were carried out and subjected to qualitative latent content analysis. The main finding was expressed in terms of six subthemes: trying to keep a private sphere; striving to communicate; searching for possibilities; taking the initiative; striving to gain insight; and using one's temperament. These (...) generated the overall theme: maintaining dignity in close relationships. This study contributes an understanding of the strategies used by people who are dependent on personal assistance. Future efforts in nursing must focus on supporting personal assistants with ethical knowledge and guidance in order that people with severe functional disabilities are empowered to achieve autonomy, integrity, influence and participation in their daily lives. (shrink)

This paper explores Cézanne’s art through the lens of disability gain. Disability gain defies the ability-disability binary, which defines disability as a lack of ability, by emphasizing what is gained through different disabilities. Central to my discussion are (1) Tobin Siebers’s description of modern art as vitally and thematically disabled and (2) Rosemarie Garland-Thomson’s concept of misfitting, which allows for a phenomenological account of disability that emphasizes the depth of awareness and creative world-making (...) possibilities that are gained through disability. By bringing Siebers’s approach to disability aesthetics and Garland-Thomson’s concept of misfitting into conversation with Merleau-Ponty’s “Cézanne’s Doubt” and “Eye and Mind,” I will explain how Cézanne’s unique way of perceiving the world and capturing it in paint helps Merleau-Ponty to dismantle abstract, disembodied concepts of visual perception and trace the nuanced contours of lived perspective. In other words, what is gained through Cézanne’s disabilities is a revolutionary optics that overcomes the limitations of Cartesian optics. (shrink)

Stress is increasingly being recognized as one of the main factors that is negatively affecting our health, and therefore there is a need to regulate daily stress and prevent long-term stress. This need seems particularly important for adults with mild intellectual disabilities who have been shown to have more difficulties coping with stress than adults without intellectual disabilities. Hence, the development of music therapy interventions for stress reduction, particularly within populations where needs may be greater, is becoming increasingly important. In (...) order to gain more insight into the practice-based knowledge on how music therapists lower stress levels of their patients with MID during music therapy sessions, we conducted focus group interviews with music therapists working with adults with MID from different countries and clinical institutions in Europe. Results provide an overview of the most-used interventions for stress reduction within and outside of music. Data-analysis resulted in the further specification of therapeutic goals, intervention techniques, the use of musical instruments, and related therapeutic change factors. The main findings indicate that music therapists used little to no receptive interventions for stress reduction, but preferred to use active interventions, which were mainly based on musical improvisation. Results show that three therapy goals for stress relief could be distinguished. The goal of “synchronizing” can be seen as a sub goal because it often precedes working on the other two goals of “tension release” or “direct relaxation,” which can also be seen as two ways of reaching stress reduction in adults with MID through music therapy interventions. Furthermore, the tempo and the dynamics of the music are considered as the most important musical components to reduce stress in adults with MID. Practical implications for stress-reducing music therapy interventions for adults with MID are discussed as well as recommendations for future research. (shrink)

A question between John Harris and I is the degree to which lessons may be learned, and insights gained, from a life distinguished by physical differences. He argues it as the “aborting Beethoven fallacy”, I insist on the evidence that what we learn from physical differences may be critical and life enhancing.

This Discussion Note calls for attention to the cultural practices of Neural Engineering as part of the life sciences as practices and technologies of manufacturing life. Through focusing on Disability, Ableism, and especially Technoableism within the field, I point out instances of onto-epistemological violence, which influence the likelihood of survival of disabled people individually and as a group. By drawing on Crip Technoscience, a method assemblage is introduced that allows to address these issues in an intersectional-kyriarchal understanding of interlocking (...) systems of privilege and oppression through generative critique and productive collaborative work. Criptical Neural Engineering is dedicated to disability justice and disability gain. It centers disabled people as epistemic activists and demands response-ability and accountability from non-disabled people, specifically engineers that want to build adaptive technologies with disabled people. (shrink)

A table of contents, in lieu of abstract -/- Foreword by Aaron Ehasz -/- Introduction: “We are all one people, but we live as if divided” Helen De Cruz and Johan De Smedt -/- Part I The Universe of Avatar: The Last Airbender -/- 1 Native Philosophies and Relationality in ATLA: It’s (Lion) Turtles All the Way Down Miranda Belarde-Lewis and Clementine Bordeaux 2 Getting Elemental: How Many Elements Are There in Avatar: The Last Airbender? Sofia Ortiz-Hinojosa 3 The Personalities (...) of Martial Arts in Avatar: The Last Airbender Zachary Isrow 4 The End of the World: Nationhood and Abolition in Avatar: The Last Airbender Nicholas Whittaker 5 The Bending World, a Bent World: Supernatural Power and Its Political Implications Yao Lin -/- Part II Water 6 Avatar: The Last Airbender and Anishinaabe Philosophy Brad Cloud 7 “Lemur!” – “Dinner!”: Human–Animal Relations in Avatar: The Last Airbender Daniel Wawrzyniak 8 On the Moral Neutrality of Bloodbending Johnathan Flowers 9 On the Ethics of Bloodbending: Why Is It So Wrong and Can It Ever Be Good? Mike Gregory 10 Mystical Rationality Isaac Wilhelm 11 “I will never, ever turn my back on people who need me”: Repairing the World Through Care Nicole Fice 12 Spirits, Visions, and Dreams: Native American Epistemology and the Aang Gang Justin Skirry and Samuel Skirry -/- Part III Earth 13 Time Is an Illusion: Time and Space in the Swamp Natalia Strok 14 There Is No Truth in Ba Sing Se: Bald-faced Lies and the Nature of Lying Nathan Kellen 15 The Rocky Terrain of Disability Gain in ATLA: Is Toph a Supercrip Stereotype or a Disability Pride Icon? Joseph A. Stramondo 16 The Earth King, Ignorance, and Responsibility Saba Fatima 17 The Middle Way and the Many Faces of Earth Thomas Arnold -/- Part IV Fire 18 The Battle Within: Confucianism and Legalism in the Nation, the Family, and the Soul Kody W. Cooper 19 Not Giving Up on Zuko: Relational Identity and the Stories We Tell Barrett Emerick and Audrey Yap 20 Uncle Iroh, from Fool to Sage – or Sage All Along? Eric Schwitzgebel and David Schwitzgebel 21 Being Bad at Being Good: Zuko’s Transformation and Residual Practical Identities Justin F. White 22 Compassion and Moral Responsibility in Avatar: The Last Airbender: “I was never angry; I was afraid that you had lost your way” Robert H. Wallace -/- Part V Air 23 The Fire Nation and the United States: Genocide as the Foundation for Empire Building Kerri J. Malloy 24 Anarchist Airbenders: On Anarchist Philosophy in ATLA Savriël Dillingh 25 A Buddhist Perspective on Energy Bending, Strength, and the Power of Aang's Spirit Nicholaos Jones and Holly Jones 26 Ahimsa and Aang’s Dilemma: “Everyone … [has] to be treated like they're worth giving a chance” James William Lincoln 27 The Avatar Meets the Karmapa: Interconnections, Friendship, and Moral Training Brett Patterson . (shrink)

According to the expressivist argument the choice to use biotechnologies to prevent the birth of individuals with specific disabilities is an expression of disvalue for existing people with this disability. The argument has stirred a lively debate and has recently received renewed attention. This article starts with presenting the expressivist argument and its core elements. It then goes on to present and examine the counter-arguments before it addresses some aspects that have gained surprisingly little attention. The analysis demonstrates that (...) the expressivist argument has a wide range of underpinnings and that counter-arguments tend to focus on only a few of these. It also reveals an important aspect that appears to have been ignored, i.e., that people do not select foetuses based on chromosomes or other biological traits, but based on characteristics of living persons with specific disabilities. This makes it more difficult to undermine the claim that negative selection of foetuses expresses a disvaluing of persons with such disabilities. It leaves the expressivist argument with a strong bite still. (shrink)

How do religions and social order interact with each other? Scholars of religions have repeatedly explored this question from numerous perspectives. However, they have yet to utilise the approach of disability studies, which focuses on disability as a social ordering process, to address this question. As such, not only have the manifold empirical relationships between religions and disability often been disregarded, but a great theoretical potential also remains untapped. In this paper, I demonstrate what the study of (...) religions can gain from analysing processes of disablement. In doing so, I introduce the concept of dis/abling religion, which integrates the study of religions and disability studies, making it possible to systematically grasp the entanglements between religions, disability, and social order. (shrink)

Capacitisme and validisme are two proposed translations, in the francophone world, of the concept of ableism. This concept arises in the 1970s and 1980s in the United States, in the wake of the disability studies and feminist movements, in order to designate a hierarchical dichotomy between abled and disabled people as well as an system of oppression. This paper proposes to follow the theoretical developments and the activist mobilizations around the notions of capacitisme and validisme, which both appeared at (...) the beginning of the 2000s. Capacitisme appears initially in the Canadian context and in the disabled feminist movements. The gender analogy and the intersectional perspective structure these concepts. While seldom appearing in the activist world, it shows up as an operational concept in some empirical research. Validisme was created, developed and gained importance through the French activist space. It echoes previous work that established the relationship between disability and work/productivity. It has recently emerged in public debate, appearing in the media and dictionaries, but is the subject of little mobilization and theorization in academic research, particularly in empirical studies. (shrink)

Disability activists have sometimes claimed their disability has actually increased their well-being. Some even say they would reject a cure to keep these gains. Yet, these same activists often simultaneously propose improvements to the quality and accessibility of assistive technology. However, for any argument favoring assistive over curative technology to work, there must be a coherent distinction between the two. This line is already vague and will become even less clear with the emergence of novel technologies. This paper (...) asks and tries to answer the question: what is it about the paradigmatic examples of curative and assistive technologies that make them paradigmatic and how can these defining features help us clarify the hard cases? This analysis will begin with an argument that, while the common views of this distinction adequately explain the paradigmatic cases, they fail to accurately pick out the relevant features of those technologies that make them paradigmatic and to provide adequate guidance for parsing the hard cases. Instead, it will be claimed that these categories of curative or assistive technologies are defined by the role the technologies play in establishing a person’s relational narrative identity as a member of one of two social groups: disabled people or non-disabled people. (shrink)

This paper moves from an educator's experience with people with strong disability and from his trouble to grasp the hidden potential of the subject, almost covered by precomprehension and prejudice, that like a sort of veil of Maya prevent him from seeing the implicit resources residing within everyone. It is argued that the educator must gain a phenomenological stance which allows him to go beyond the experience of limits towards the very essence of the person. The educator's gaze (...) arises from a path of awareness and personal growth, capable of revealing the authentic meaning of the educational act. Ispiring to the narrations of some literary figures, the main characteristics of the educational gaze are outlined here, in terms of a way of being-in-the-situation, capable of wonder and astonishment, attention to details and untiring search for meaning. (shrink)

Visual cortical prostheses (VCPs) have the potential to provide artificial vision for visually impaired persons. However, the nature and utility of this form of vision is not yet fully understood. Participants in the early feasibility trial for the Orion VCP were interviewed to gain insight into their experiences using artificial vision, their motivations for participation, as well as their expectations and assessments of risks and benefits. Analyzed using principles of grounded theory and an interpretive description approach, these interviews yielded (...) six themes, including: the irreducibility of benefit to device functionality, mixed expectations for short-term device functionality and long-term technological advancement of visual prostheses, and a broad range of risks, concerns, and fears related to trial participation. We argue that these narratives motivate a nuanced set of ethical considerations related to the complex relationship between functionality and benefit, the intersection of user experience with disability justice, and the import of expectations and indirect risks on consent. (shrink)

Disability scholars have argued that the disadvantage of disability is caused primarily by social factors and calls out for social change as a matter of justice. But what about psychiatric disability? While noting several factors that make psychiatric disability a special casethe mentally ill individuals unreliability of judgment and instability of functioningSara Goering argues that much is gained by viewing mental illness through the lens of social oppression and workingtoward recognition of individuals with mental illness as (...) equal members of the human community. (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)

Because contractarians see justice as mutual advantage, they hold that justice can be rationally grounded only when each can expect to gain from it. John Rawls seems to avoid this feature of contractarianism by fashioning the parties to the contract as Kantian agents whose personhood grounds their claims to justice. But Rawls also endorses the Humean idea that justice applies only if people are equal in ability. It would seem to follow from this idea that dependent persons (such as (...) the disabled) lack claims of justice. It appears, then, that the Kantian and Humean themes in Rawls conflict. I present a reading of Rawls that resolves this tension between the Kantian and Humean themes. The first theme, I argue, allows Rawls to maintain that persons as such are owed justice regardless of their ability to engage in social cooperation. The second theme, I argue, allows him to retain Hume's connection between justice and reciprocity, but confines the reciprocity condition to relations among nondependents. I conclude that Rawls's approach permits him to rebut recent criticisms leveled by disability theorists and others who claim that his theory excludes dependents. (shrink)

The use of the Quality Adjusted Life-Year (QALY) as a measure of the benefit obtained from health care expenditure has been attacked on the ground that it gives a lower value to preserving the lives of people with a permanent disability or illness than to preserving the lives of those who are healthy and not disabled. The reason for this is that the quality of life of those with illness or disability is ranked, on the QALY scale, below (...) that of someone without a disability or illness. Hence we can, other things being equal, gain more QALYs by saving the lives of those without a permanent disability or illness than by saving the lives of those who are disadvantaged in these ways. But to do so puts these disadvantaged people under a kind of double jeopardy. Not only do they suffer from the disability or illness, but because of it, a low priority is given to forms of health care that can preserve their lives. This, so the objection runs, is unjust or unfair. This article assesses this objection to the use of QALYs as a basis for allocating health care resources. It seeks to determine what is sound in the double jeopardy objection, and then to show that the defender of QALYs has an adequate response to it. (shrink)

The goal of the present study was to investigate whether children’s cognitive strengths can compensate the accompanied weaknesses related to their specific learning difficulties. A Bayesian multigroup mediation SEM analysis in 281 fourth-grade children identified a cognitive compensatory mechanism in children with mathematical learning difficulties (n= 36): Children with weak number sense, but strong rapid naming performed slightly better on mathematics compared to peers with weak rapid naming. In contrast, a compensatory mechanism was not identified for children with a comorbid (...) mathematical and reading difficulty (n= 16). One explanation for the latter finding could relate to the lack of ability to compensate, because of the difficulties these children experience in both academic domains. These findings lead to a new direction in research on learning difficulties in mathematics and/or reading by suggesting that children with a learning disability each have a unique profile of interrelated cognitive strengths and weaknesses. Children might compensate with these strengths for their weaknesses, which could lead to (small) learning gains in the affected domain. (shrink)

Il a été récemment proposé de recourir, pour la répartition des ressources médicales, à la notion de quality adjusted life year (QALY). Selon cette perspective, une année de vie en bonne santé équivaut à un QALY, tandis qu'une année avec incapacité ou gêne comptera pour moins, la valeur précise dépendant de la gravité de l'affection. Les partisans de cette méthode préconisent de répartir les dépenses de santé de manière à gagner le plus grand nombre de QALY. La présente étude analyse (...) les mérites et les inconvénients de la méthode proposée. Elle montre finalement qu'avoir pour unique critère le gain en QALY escomptés est à la fois contestable d'un point de vue utilitariste, et injuste. A recent proposal for allocating medical resources appeals to the concept o f a quality adjusted life year (QALY). The idea is that a year of healthy life counts for one QALY, and a year of life involving disability or discomfort counts for less than one, how much less depending on its seriousness. Advocates of this approach argue that health care expenditure should be so distributed as to maximise the total number of QALYs gained. The merits and demerits of this proposal are examined in this article. We conclude that the approach should not be rejected altogether, but that taking the expected gain in QALYs per unit cost as one's sole criterion would both be objectionable in utilitarian terms and be unjust. (shrink)

Multiculturalism has not yet systematically addressed, much less challenged, dominant approaches to poverty and welfare reform. This lacuna must be rectified since the widespread poverty experienced by people of color poses a substantive threat to the development of a truly inclusive and multicultural society. Present approaches to poverty, defined in the context of welfare reform, are defective for three reasons: First, welfare reform basically aims to reduce welfare “dependency” by moving so-called able-bodied welfare recipients off welfare and into the labor (...) market. This project seems destined to fail given a chronic scarcity of jobs, and especially decent paying jobs. Second, welfare reform does not provide an adequate framework for the general alleviation of poverty since many poor receive little or no welfare assistance. Third, welfare assistance is based on an invidious, stigmatizing distinction between the able-bodied poor (viewed as unworthy and disreputable) and the disabled poor. Thus, given disproportionate rates of poverty among people of color as well as a general (but mistaken) impression that US poverty is principally a “minority” problem, present policies and attitudes toward the poor insure that many people of color will bear the brunt of economic and symbolic marginalization despite gains which accrue to some people of color as the result of greater racial and cultural inclusiveness. (shrink)

Traumatic brain injury (TBI) is a major cause of death and disability in Western society, and often results in functional and neuropsychological abnormalities. Memory impairment is one of the most significant cognitive implications after TBI. In the current study we investigated procedural memory acquisition by observational training in TBI patients. It was previously found that while practicing a new motor skill, patients engage in all three phases of skill learning–fast acquisition, between-session consolidation, and long-term retention, though their pattern of (...) learning is atypical compared to healthy participants. A different set of studies showed that training by observing a motor task, generally prompted effective acquisition and consolidation of procedural knowledge in healthy participants. The aim of our study was to (i) evaluate the potential benefit of action observation in TBI patients. (ii) Examine the possibility of general improvement in performance between the first (24 h post-training) and second (2 weeks post-training) stage of the study. (iii) Investigate the link between patients’ ability to benefit from observational learning (viaperformance gains–speed and accuracy) and common measures of injury (such as severity of injury, functional and cognitive measures).Materials and methodsPatients hospitalized after moderate to severe TBI, were trained by observation for the finger opposition sequence (FOS) motor task. They were then tested for the observation-trained sequence (A) and a similar control sequence (B), at two different time-points (24 h post-training and 2 weeks later).Results revealed(i) a significant difference in performance between the trained (A) and untrained (B) sequences, in favor of the trained sequence. (ii) An increase in performance for both sequences A and B toward the second (retention) session. (iii) The advantage for sequence A was stable and preserved also in the second session. (iv) Participants with lower moderate Functional Independence Measure (FIM) scores gained more from observational-procedural learning, compared with patients with higher functional abilities.ConclusionOverall, these findings support the notion that TBI patients may achieve procedural memory consolidation and retention through observational learning. Moreover, different functional traits may predict the outcomes of observational training in different patients. These findings may have significant practical implications in the future, regarding skill acquisition methods in TBI patients. (shrink)

Assistive Device Art derives from the integration of Assistive Technology and Art, involving the mediation of sensorimotor functions and perception from both, psychophysical methods and conceptual mechanics of sensory embodiment. This paper describes the concept of ADA and its origins by observing the phenomena that surround the aesthetics of prosthesis-related art. It also analyzes one case study, the Echolocation Headphones, relating its provenience and performance to this new conceptual and psychophysical approach of tool design. This ADA tool is designed to (...) aid human echolocation. They facilitate the experience of sonic vision, as a way of reflecting and learning about the construct of our spatial perception. Echolocation Headphones are a pair of opaque goggles which disable the participant’s vision. This device emits a focused sound beam which activates the space with directional acoustic reflection, giving the user the ability to navigate and perceive space through audition. The directional properties of parametric sound provide the participant a focal echo, similar to the focal point of vision. This study analyzes the effectiveness of this wearable sensory extension for aiding auditory spatial location in three experiments; optimal sound type and distance for object location, perceptual resolution by just noticeable difference, and goal-directed spatial navigation for open pathway detection, all conducted at the Virtual Reality Lab of the University of Tsukuba, Japan. The Echolocation Headphones have been designed for a diverse participant base. They have both the potential to aid auditory spatial perception for the visually impaired and to train sighted individuals in gaining human echolocation abilities. Furthermore, this Assistive Device artwork instigates participants to contemplate on the plasticity of their sensorimotor architecture. (shrink)

In our world today, afflicted by wars between States, by conflict between groups within States, and by the scourge of terrorism, civilians constitute the ‘vast majority of casualties in situations of armed conflict’ (UN Security Council, Resolution 1894, 2009). Civilian victims of documented and un-documented armed conflicts and their destructive consequences run in the millions. An overwhelming majority of the dead, injured, disabled are civilians and damages caused by armed conflicts primarily affect the civilian infrastructure and the basic resources of (...) subsistence of entire populations. Civilians today are in the line of fire not only as a side effect of war. Increasingly, they are becoming the prime and intentional targets of combatants and armed elements. ‘Political and military designs supersede basic respect for the dignity and rights of persons and communities’ (Migliore 2009) and civilians are becoming deliberate targets and means for achieving political or military gains. They are even being used as a human shield for armed advancement. The menace of civilian deaths in the line of fire is of utmost concern for all humanity, for all religions, and for Christianity. Among the foundational teachings on which the Catholic perspective to this important issue of placing civilians in the line of fire is based, we can identify three core beliefs: a) all human beings are equal in dignity and their life is sacred; b) the right and duty to defend the life and common good from unjust aggressors; c) the permanent validity of the moral law forbidding murder even in the context of armed conflicts. After considering these the paper studies some of the ways in which the Catholic Church responds to the situation of civilians caught in the line of fire. (shrink)

Postural instability and balance impairment are disabling symptoms in patients with acute unilateral peripheral vestibular hypofunction. Vestibular rehabilitation is known to improve the vestibular compensation process, but its effect on posture recovery remains poorly understood, little is known about when VR must be done, and whether the degree of vestibular loss matters is uncertain. We analyzed posture control under static and dynamic postural tasks performed in different visual conditions [eye open ; eyes closed ; and optokinetic stimulation] using dynamic posturography. (...) Non-linear analyses of the postural performance were performed in two groups of patients with UVH subjected to the same VR program based on the unidirectional rotation paradigm and performed either early or later after vertigo attack. Distribution of the angular horizontal vestibulo-ocular reflex gain values recorded on the hypofunction side before rehabilitation differentiated two distinct sub-groups with aVOR gains below or above 0.20. The postural performance of the four sub-groups of patients with UVH tested before VR showed significantly altered postural parameters compared with healthy controls. Greater instability, higher energy to control posture, larger sway without feedback corrections, and lower time of automatic control of posture were observed in static conditions. The four sub-groups recovered near-normal postural performance after VR in the EO and EC conditions, but still exhibited altered postural performance with optokinetic stimulation. In dynamic posturography conditions and before VR, the percentage of patients able to perform the postural tasks with EC and optokinetic stimulation was significantly lower in the two sub-groups with aVOR gain <0.20. After VR, the improvement of the postural parameters depended on the stage of rehabilitation and the degree of vestibular hypofunction. The best balance function recovery was found in the sub-group with early VR and pre-rehabilitation aVOR gain above 0.20, the worst in the sub-group with late rehabilitation and aVOR gain below 0.20. These differences were seen when the vestibular input remains the main sensory cue to control balance, that is, on unstable support without vision or altered visual motion cues. These findings extend to dynamic balance recovery the crucial roles of early rehabilitation and degree of vestibular hypofunction which we have already highlighted for vestibulo-ocular reflex recovery. (shrink)