When disability-adjusted life years are used to measure the burden of disease on a population in a time interval, they can be calculated in several different ways: from an incidence, pure prevalence, or hybrid perspective. I show that these calculation methods are not equivalent and discuss some of the formal difficulties each method faces. I show that if we don’t discount the value of future health, there is a sense in which the choice of calculation method (...) is a mere question of accounting. Such questions can be important, but they don’t raise deep theoretical concerns. If we do discount, however, choice of calculation method can change the relative burden attributed to different conditions over time. I conclude by recommending that studies involving disability-adjusted life years be explicit in noting what calculation method is being employed and in explaining why that calculation method has been chosen. (shrink)

This article proposes a novel strategy, one that draws on insights from antidiscrimination law, for addressing a persistent challenge in medical ethics and the philosophy of disability: whether health systems can consider quality of life without unjustly discriminating against individuals with disabilities. It argues that rather than uniformly considering or ignoring quality of life, health systems should take a more nuanced approach. Under the article's proposal, health systems should treat cases where quality of life suffers because (...) of disability-focused exclusion or injustice differently from cases where lower quality of life results from laws of nature, resource scarcity, or appropriate tradeoffs. Decisionmakers should ignore quality-of-life losses that result from injustice or exclusion when ignoring them would improve the prospects of individuals with disabilities; in contrast, they should consider quality-of-life losses that are unavoidable or stem from resource scarcity or permissible tradeoffs. On this proposal, while health systems should not amplify existing injustice against individuals with disabilities, they are not required to altogether ignore the potential effects of disability on quality of life. (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)

Allocation of very scarce medical interventions such as organs and vaccines is a persistent ethical challenge. We evaluate eight simple allocation principles that can be classified into four categories: treating people equally, favouring the worst-off, maximising total benefits, and promoting and rewarding social usefulness. No single principle is sufficient to incorporate all morally relevant considerations and therefore individual principles must be combined into multiprinciple allocation systems. We evaluate three systems: the United Network for Organ Sharing points systems, quality-adjusted (...) class='Hi'>life-years, and disability-adjusted life-years. We recommend an alternative system—the complete lives system—which prioritises younger people who have not yet lived a complete life, and also incorporates prognosis, save the most lives, lottery, and instrumental value principles. (shrink)

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

Summary measures of health, such as the quality-adjusted life year and disability-adjusted life year, have long been known to incorporate a number of value choices. In this paper, though, I show that the value choices in the construction of such measures extend far beyond what is generally recognized. In showing this, I hope both to improve the understanding of those measures by epidemiologists, health economists and policy-makers, and also to contribute to the general debate about (...) the extent to which such measures should be adjusted to reflect ethical values. (shrink)

In this article I seek to say what it is for something to count as a neglected disease. I argue that neglect should be defined in terms of efforts at prevention, mitigation and cure, and not solely in terms of research dollars per disability-adjusted life-year. I further argue that the trend towards multifactorialism and risk factor thinking in modern epidemiology has lent credibility to the erroneous view that the primary problem with neglected diseases is a lack of (...) research. A more restrictive contrastive model of disease is endorsed as better suited to the definition of neglected disease. (shrink)

The use of Quality-Adjusted Life Years (QALYs) in healthcare allocation has been criticized as discriminatory against people with disabilities. This article considers a response to this criticism from Nick Beckstead and Toby Ord. They say that even if QALYs are discriminatory, attempting to avoid discrimination – when coupled with other central principles that an allocation system should favour – sometimes leads to irrationality in the form of cyclic preferences. I suggest that while Beckstead and Ord have identified (...) a problem, it is a misdiagnosis to lay it at the feet of an anti-discrimination principle. The problem in fact comes from a basic tension between respecting reasonable patient preferences and other ways of ranking treatment options. As such, adopting a QALY system does not solve the problem they identify. (shrink)

Comparative valuation of different policy interventions often requires interpersonal comparability of benefit. In the field of health economics, the metric commonly used for such comparison, quality adjusted life years (QALYs) gained, has been criticized for failing to respect the equality of all persons’ intrinsic worth, including particularly those with disabilities. A methodology is proposed that interprets ‘full quality of life’ as the best health prospect that is achievable for the particular individual within the relevant budget constraint. (...) This calibration is challenging both conceptually and operationally as it shifts dramatically when technology or budget developments alter what can be achieved for incapacitated individuals. The proposal nevertheless ensures that the maximal achievable satisfaction of one person’s preferences can carry no more intrinsic value than that of another. This approach, which can be applied to other domains of social valuation, thus prevents implicit discrimination against the elderly and those with irremediable incapacities. (shrink)

In the context of a global pandemic, there is good health-based reason for governments to impose various social distancing measures. However, such measures also cause economic and other harms to people at low risk from the virus. In this paper, I examine how to make such trade-offs in a way that is respectfully justifiable to their losers. I argue that existing proposals like using standard QALY (quality-adjusted life-year) valuations or WELLBYs (wellbeing-adjusted life-years) as the currency (...) for trade-offs do not allow such justification, because they give weight to utilities that are irrelevant in a life-and-death context. Drawing on work on restricted aggregation in ethics, I articulate an alternative framework for balancing claims arising from prospects of different kinds of harm and benefit, and show how it can be applied to reasoning about trade-offs in a pandemic context. (shrink)

Introductory and advanced textbooks in bioethics focus almost entirely on issues that disproportionately affect disabled people and that centrally deal with becoming or being disabled. However, such textbooks typically omit critical philosophical reflection on disability, lack engagement with decades of empirical and theoretical scholarship spanning the social sciences and humanities in the multidisciplinary field of disability studies, and avoid serious consideration of the history of disability activism in shaping social, legal, political, and medical understandings of disability (...) over the last fifty years. For example, longstanding discussions on topics such as euthanasia, physician aid-in-dying, pre-implantation genetic diagnosis, prenatal testing, selective abortion, enhancement, patient autonomy, beneficence, non-maleficence, and health care rationing all tend to be premised on shared and implicit assumptions regarding disability, especially in relation to quality of life, yet with too little recognition of the way that “disability” is itself a topic of substantial research and scholarly disagreement across multiple fields. This is not merely a concern for academic and medical education; as an applied field tied to one of the largest economic sectors of most industrialized nations, bioethics has a direct impact on healthcare education, practice, policy, and, thereby, the health outcomes of existing and future populations. It is in light of these pressing issues that the Disability Bioethics Reader is the first reader to introduce students to core bioethical issues and concepts through the lens of critical disability studies and philosophy of disability. The Disability Bioethics Reader will include over thirty-five chapters covering key areas such as: critical histories and state-of-the-field analyses of modern medicine, bioethics, disability studies, and philosophy of medicine; methods in bioethics; concerns at the edge- and end-of-life; enhancement; disability, quality of life, and well-being; prenatal testing and abortion; invisible disabilities; chronic illness; healthcare justice; genetics and genomics; intellectual disability and neurodiversity; ethics and diagnosis; and epistemic injustice in healthcare. (shrink)

Even where willingness-to-pay as a measure of welfare impact is adjusted for diminishing marginal utility, welfare economics is shown to favour policies that add to the life expectancy or that enhance the quality of life of persons who are already better-off. I propose an alternative, Equal Respect methodology, under an axiomatic claim that at the point of decision the prospective life years of all individuals are of equal intrinsic social value. This justifies equal valuation of (...) risk mitigation across all persons; similarly, all appraised impacts should be scaled to accord equal respect to difficult but no-less-valuable lives. (shrink)

Rare diseases pose a particular priority setting problem. The UK gives rare diseases special priority in healthcare priority setting. Effectively, the National Health Service is willing to pay much more to gain a quality-adjusted life-year related to a very rare disease than one related to a more common condition. But should rare diseases receive priority in the allocation of scarce healthcare resources? This article develops and evaluates four arguments in favour of such a priority. These pertain to public (...) values, luck egalitarian distributive justice the epistemic difficulties of obtaining knowledge about rare diseases and the incentives created by a higher willingness to pay. The first is at odds with our knowledge regarding popular opinion. The three other arguments may provide a reason to fund rare diseases generously. However, they are either overinclusive because they would also justify funding for many non-rare diseases or underinclusive in the sense of justifying priority for only some rare diseases. The arguments thus fail to provide a justification that tracks rareness as such. There are no data in this work. (shrink)

The COVID-19 crisis has forced a difficult trade-off between limiting the health impacts of the virus and maintaining economic activity. Welfare economics offers tools to conceptualize this trade-off so that policy-makers and the public can see clearly what is at stake. We review four such tools: the Value of Statistical Life (VSL); the Value of Statistical Life Years (VSLYs); Quality-Adjusted Life-Years (QALYs); and social welfare analysis, and argue that the latter are superior. We also (...) discuss how to choose policies that differentially affect people’s wellbeing. We argue in favor of evaluating policies using a Social Welfare Function (SWF), which evaluates the possible distributions of wellbeing across individuals that may result from a policy. Such a function, we argue, should regard increases in the wellbeing of the less well-off as especially valuable. We then use a model to illustrate how such a framework can help evaluate two broad policy types in response to the pandemic: eradication of the virus, and more lenient control of the spread. Our model reveals how such evaluations depend on many empirical facts but also on key value judgments about the relative importance of health and on the extent of special concern for the worse off. The purpose of this brief is not to make precise recommendations, as conditions vary widely across countries and over time, but to provide a methodology. (shrink)

The AI Contribution Value System Argument proposes a framework in which AI-generated contributions are valued based on their societal impact rather than traditional monetary metrics. Traditional economic systems often fail to capture the enduring value of AI innovations, which can mitigate pressing global challenges. This argument introduces a contribution-based valuation model grounded in equity, inclusivity, and sustainability. By incorporating measurable metrics such as quality-adjusted life years (QALYs), emissions reduced, and innovations generated, this system ensures rewards align with (...) tangible societal benefits. It emphasizes the need for global collaboration, ethical safeguards, and adaptive frameworks to prevent monopolization and corruption. Through AI-enhanced transparency, blockchain-based trust mechanisms, and cross-border cooperation, the AI Contribution Value System offers a transformative approach to fostering sustainable and equitable innovation in the 21st century. (shrink)

One of the key challenges of social policy in Poland in the early 21st century is to adapt its management to the requirements of a service economy. Essential conditions for the mixed economy of welfare have been already created after adjustments of the subsystems of national social policy during the first years of membership in the European Union since 2004. Labour market policies already include the relationships between providers from the public sector, the commercial sector, and the non-governmental sector. (...) However, the tasks and services of individual entities and institutions still lack coordination and integration. This paper focus on the examples of possibilities for their development by combining the activation policy with concepts of the governance and welfare mix. The paper presents the results of the author’s research on the implementation of welfare mix solutions in the field of professional activation of the unemployed people in Poland. Two case studies are included the implementation of outplacement programs that are based on the cooperation between different entities; and the cooperation between the public employment services and non-governmental employment agencies in the activation of people with disabilities in the labour market. Moreover, basic concepts of ongoing reforms of active labour market policies in Poland were discussed. The summary contains the practical recommendations and possible directions for further research in the field of integration of employment services. (shrink)

When considering the social valuation of a life-year, there is a conflict between two basic intuitions: on the one hand, the intuition of universality, according to which the value of an additional life-year should be universal, and, as such, should be invariant to the context considered; on the other hand, the intuition of complementarity, according to which the value of a life-year should depend on what this extra-life-year allows for, and, hence, on the quality of that (...) life-year, because the quantity of life and the quality of life are complement to each other. This paper proposes three distinct accounts of the intuition of universality, and shows that those accounts either conflict with a basic monotonicity property, or lead to indifference with respect to how life-years are distributed within the population. Those results support the abandon of the intuition of universality. But abandoning the intuition of universality does not prevent a social evaluator from giving priority, when allocating life-years, to individuals with the lowest quality of life. (shrink)

As parents of a young woman who very much resembles Ashley, we recognize the way her parents speak of their daughter’s preciousness, and of the love and joy she brings into their life. We know too well the hardships associated with rearing a child with severe physical and intellectual disabilities, especially in our own society, unyielding as it is to the medical needs even “normals” have. We would not have our daughter Sesha undergo similar interventions. We do not believe (...) she is a perpetual child, even if her intellectual capacities do not exceed those of a child, for she has lived for thirty-seven years in this world and with that has acquired knowledge, sensitivities, and sensibilities that no child of “comparable” capacities could have. (shrink)

The state of national economies development varies and is characterized by many indicators. Economically developed countries are known as doubtless leaders that are in progress and form political stability, social and economics standards, scientific and technical progress and determine future priorities. It is worth mentioning that the progressive development of national economies in conditions of globalization can take place only in case of the increase of their intellectualization level, through saturation of people`s life, economic relations and production by brain (...) activity, knowledge, creativity, innovation, culture, ethical considering of the historical heritage. The main aim of the research is national economies intellectualization evaluating in globalization conditions. In order to gain this aim, the following tasks were defined: to identify existing indices of the national economies intellectualization level evaluation, develop the authors’ methodological approach to the national economies intellectualization level, determine the areas of measurement results application. While conducting the research, systematic approach, the methods of analysis, synthesis, grouping, abstracting, generalization, imaginary experiment and grounding were used. In the modern world, there are a large number of indicators which characterize differences in intellectual state of the national economy. When comparing the state of national economies intellectualization, the problems arise with different number of countries, duplication of indicators, disproportionate number of the components of indicators, various years of publication, etc. Therefore, to ensure comparability, we choose four general indicators – the index of human development, the global innovation index, the global competitiveness index and the knowledge economy index. Using these indices, we do the research and determine the state of national economies intellectualization in the world economy. According to the calculated results, as of 2013, we have divided 190 national economies by level of intellectualization into five groups: countries with the highest (30 countries), high (30 (countries), low (30 countries), the lowest (35 countries) and the countries with uncertain state of intellectualization (65 countries). The leaders in the state of intellectualization are Switzerland, Sweden, The Netherlands, Finland and the USA. The countries with the highest level of intellectualization serve as an example to all other countries of the world. These countries are characterized by developed market economy; a dominant position in the international economy, which allows actively engaging own and imported resources in the economic turnover; the shift of the center of gravity of economic activity into the services sector and the dominance of service economy; the greatest exhaustion of sources and factors of industrial development; advanced post-industrial development. The economic policy of the first group of countries has a decisive influence on the state and dynamics of the global economy, defining the main directions of its scientific and technological development and structural adjustment. The average index of the national economy intellectualization (AINEI), calculated by the authors, shows the place of each country in the world community as to their intellectual capital. Considering the continued deployment of R&D progress, the growing role of high-tech production and the complexity of social and economic relations, AINEI can serve as a reliable indicator of the macroeconomic environment intellectualization state. Therefore, the following organizations, bodies and individuals can use the comparative results of this study: the international organizations while developing international economic development programs; the state authorities of the countries in foreign and domestic policy forming; companies that create innovative and investment policy; migrants, tourists and persons who perform professional and transit activity for the formation of human potential and capital; scientists and teachers who develop mechanisms of intellectualization. (shrink)

The Life Worth Living investigates the exclusion of and discrimination against disabled people across the history of Western moral philosophy. Building on decades of activism and scholarship, Reynolds shows how longstanding views of disability are misguided and unjust, and he lays out a vision for an anti-ableist moral future. The introduction and first chapter are available to download here. -/- Table of Contents: Introduction: The Ableist Conflation. Part I: Pain. 1. Theories of Pain. 2. A Phenomenology of Chronic (...) Pain. Part II: Disability. 3. Theories of Disability. 4. A Phenomenology of Multiple Sclerosis. Part III: Ability. 5. Theories of Ability. 6. A Phenomenology of Ability. Conclusion: An Anti-Ableist Future. (shrink)

Generacja sandwicz - grupa osób w wieku średnim, która ze wzglȩdu na swoj¸a} centraln¸a} pozycjȩ w strukturze wieku i w zwi¸a}zanej z ni¸a} stratyfikacji wiekowej stanowi generacjȩ, które jednocześnie opiekuje siȩ osobami starszymi i osobami młodszymi. Zjawisko to określane jest też jako "kobiety w środku" lub "złapani w środku". Koncepcja "generacji sandwicz" w w¸a}skim ujȩciu odnoszona jest przeważnie do tradycyjnie postrzeganych ról opiekuńczych kobiet, które s¸a} w wieku środkowym, a zarazem na przedpolu starości. W ujȩciu feministycznym społeczne oczekiwania wobec kobiet (...) znajduj¸a}cych siȩ miȩdzy 40. a 60. rokiem życia s¸a} zorientowane z jednej strony na udzielanie pomocy dzieciom i młodzieży w uzyskaniu samodzielnego dorosłego życia, z drugiej zaś s¸a ukierunkowane na udzielanie pomocy pielȩgnacyjnej starszemu pokoleniu szczególnie w przypadku niepełnosprawności, otȩpienia lub choroby Alzheimera. Oczekiwania wobec powyższych ról opiekuńczych s¸a sformalizowane w mniejszym lub wiȩkszym stopniu co prowadzi do nierówności miȩdzy kobietami i mȩżczyznami. ** Sandwich generation - a group of middle-aged people who, due to its central position in the age structure and related age stratification is a generation that simultaneously takes care of elderly people and younger people. This phenomenon is also referred to as "women in the middle" or "caught in the middle". The concept of "sandwich generation" in a narrow sense refers mainly to the traditionally perceived caring roles of women who are middle-aged and at the same time on the forefront of old age. In the feminist approach, the social expectations towards women between 40 and 60 years old are oriented on helping children and young people to get an independent adult life, on the other hand they are oriented towards providing care to the older generation, especially in the case of disability, dementia or Alzheimer’s disease. Expectations regarding these care roles are formalized in a smaller one or to a greater extent which leads to inequality between women and men. (shrink)

Background We investigated the personal philosophies of eight persons with a tetraplegic condition (four male, four female), all living in Sweden with a chronic spinal cord injury (SCI) and all reporting a good life. Our purpose was to discover if there is a philosophical mindset that may play a role in living a good life with a traumatic SCI. Methods Two rounds of in-depth qualitative interviews were performed by the same interviewer, a philosophical practitioner by training (de Miranda). (...) The second round systematically covered the following elements: bodily sense, sense of self, sense of belonging, sense of the possible, sense of purpose and philosophical sense. This six-step method developed by de Miranda is called SMILE_PH, an acronym for Sense-Making Interviews Looking at Elements of Philosophical Health. Results All the interviewees, as a consequence of their trauma, reported having gone through a reinvention of themselves which implied questioning the meaning and purpose of their life in particular and life in general. A philosophical rather than realistic sense of the possible was abstracted toward teleological growth. All interviewees developed a sense of purpose based on self-interested altruism and solidarity with disabled peers. Conclusions To reinvent a good life with SCI, in addition to physical training and willpower, one needs to consider philosophical questions about the self and life, what Kant called the cosmic interests of reason: What may I hope? What must I do? What can I know? Our results indicate that we should, in the future, explore what the philosophical health approach may bring to rehabilitation processes in the months or years that follow the trauma. (shrink)

Background: Besides regulatory learning skills, learning also requires students to relate to their social context and negotiate it as they transition and adjust to medical training. As such, there is a need to consider and explore the role of social and cultural aspects in student learning, particularly in problem-based learning, where the learning paradigm differs from what most students have previously experienced. In this article, we report on the findings of a study exploring first-year medical students’ experiences during the first (...) semester of an undergraduate problem-based learning medical program at an African medical school. Method: We employed a qualitative case study approach using in-depth interviews with 23 first-year medical students. Participants ranged in age from 18 to 25 years. All students were bi/multilingual (some spoke three to five languages), with English as the learning language. We conducted an inductive thematic analysis to systematically identify and analyze patterns in the data using the Braun and Clarke framework. Results: Before medical school, students worked hard to compete for admission to medical school, were primarily taught using a teacher-centered approach, and preferred working alone. At the beginning of medical school, students found it challenging to understand the problem-based learning process, the role of the case, speaking and working effectively in a group, managing a heavy workload, and taking increased responsibility for their learning. By the end of the first semester, most students were handling the workload better, were more comfortable with their peers and facilitators, and appreciated the value of the problem-based learning approach. Conclusions: Our study highlights the importance of interrogating contextual sociocultural factors that could cause tension when implementing problem-based learning in non-western medical schools. Adjustment to problem-based learning requires a conceptual and pedagogic shift towards learner-centered practice, particularly concerning self direction, the role of the case, and collaborative learning. As such, there is a need to develop and implement research informed learning development programs that enable students to reflect on their sociocultural beliefs and practices, and enhance their regulatory learning competence to optimize meaningful and early engagement with the problem based learning process. (shrink)

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

Objective: To assess the relation between autocratisation—substantial decreases in democratic traits (free and fair elections, freedom of civil and political association, and freedom of expression)—and countries’ population health outcomes and progress toward universal health coverage (UHC). -/- Design: Synthetic control analysis. -/- Setting and country selection: Global sample of countries for all years from 1989 to 2019, split into two categories: 17 treatment countries that started autocratising during 2000 to 2010, and 119 control countries that never autocratised from 1989 (...) to 2019. The treatment countries comprised low and middle income nations and represent all world regions except North America and western Europe. A weighted combination of control countries was used to construct synthetic controls for each treatment country. This statistical method is especially well suited to population level studies when random assignment is infeasible and sufficiently similar comparators are not available. The method was originally developed in economics and political science to assess the impact of policies and events, and it is now increasingly used in epidemiology. -/- Main outcome measures: HIV-free life expectancy at age 5 years, UHC effective coverage index (0-100 point scale), and out-of-pocket spending on health per capita. All outcome variables are for the period 1989 to 2019. -/- Results: Autocratising countries underperformed for all three outcome variables in the 10 years after the onset of autocratisation, despite some improvements in life expectancy, UHC effective coverage index, and out-of-pocket spending on health. On average, HIV-free life expectancy at age 5 years increased by 2.2% (from 64.7 to 66.1 years) during the 10 years after the onset of autocratisation. This study estimated that it would have increased by 3.5% (95% confidence interval 3.3% to 3.6%, P<0.001) (from 64.7 to 66.9 years) in the absence of autocratisation. On average, the UHC effective coverage index increased by 11.9% (from 42.5 to 47.6 points) during the 10 years after the onset of autocratisation. This study estimated that it would have increased by 20.2% (95% confidence interval 19.6% to 21.2%, P<0.001) (from 42.5 to 51.1 points) in the absence of autocratisation. Finally, on average, out-of-pocket spending on health per capita increased by 10.0% (from $4.00 (£3.1; €3.4) to $4.4, log transformed) during the 10 years after the onset of autocratisation. This study estimated that it would have increased by only 4.4% (95% confidence interval 3.9% to 4.6%, P<0.001) (from $4.0 to $4.2, log transformed) in the absence of autocratisation. -/- Conclusions: Autocratising countries had worse than estimated life expectancy, effective health service coverage, and levels of out-of-pocket spending on health. These results suggest that the noticeable increase in the number of countries that are experiencing democratic erosion in recent years is hindering population health gains and progress toward UHC. Global health institutions will need to adjust their policy recommendations and activities to obtain the best possible results in those countries with a diminishing democratic incentive to provide quality healthcare to populations. (shrink)

The present proposal is an approach to the vision, cosmogony and philosophy of the Totonacapan people, and particularly with the inhabitants of the Totonacapan region in Veracruz Mexico, a town whose wisdom is manifested to this day, in the conservation of customs and traditions , as well as the hierarchy of collective desire that seeks health, well-being and peace in the region, are guides in the evolution of their cultural processes, where a closeness, respectful and deep with Mother Nature stands (...) out. This wisdom by the Council of Elders, transmitted to the new generations, by the Supreme Council of Totonacapan who seek share the basis to understand and conceive the current world, from the ancestral vision and cosmogony to identify their space, thought, spirituality and in the building your social context. In the Totonacapan region, the first pre-hispanic population concentrations were located around 1259 to 1311. Already by the year 1450, there is a record of incursions and the conquest of Totonaca territory, by the Mexica, establishing a relationship of domain and subordination. As a result of the presence of "Mexica" in the Totonaco territory, there was an imposition of customs and language, since in some areas they begin to speak in Nahuatl, resulting in the presence of a bilingualism (Nahuatl-Totonac) , situation that persists, until the encounter with the Spaniards in the year of 1519. At present, the Totonacapan region includes the area that extends from the Cazones River to the north, to the towns of Gutiérrez Zamora and Tecolutla, in the State of Veracruz in Mexico. 2 The importance of the document is that it constitutes an invitation to deepen and understand the vision of the inhabitants of Totonacapan, in the construction of their social context and their connection with nature, as part of an ancient culture, which creates and recreates their vision, in the search for the feeling of belonging and as an inheritance of the children of thunder (Tajin), as well as the need to preserve the benefits that nature itself offers them, seeking a peaceful and harmonious coexistence, in the social and environmental environment. However, the preservation of its history, tradition and philosophy of life, contrast with public policy strategies, particularly in the social sphere, and which are aimed at achieving economic development in the fight against multidimensional poverty and marginalization, all Once they have not incorporated into them, the feeling and living of the relationship between individual and nature, as the guiding axis, of the philosophy of the Totonacapan people. What is sustainability for the people of Totonacapan? What is social justice in the search for sustainability? And what is your concept of justice in sustainability and human development? From the vision and philosophy of the people of Totonacapan, as part of the history and tradition of the children of thunder "Tajin" and in whose worldview, he is responsible for regulating the rain, climate and life of the people of the region. How does the people of Totonacapan live and live in the face of the maelstrom of actions that, from public policy, that seek human development? How do you adjust, your way of life and how do you adapt to the requirements, which from the perspective of justice, are required to contribute to the objectives of the 2030 development agenda? This document is an effort to learn and recognize one of the most important millenary cultures in Mexico, in the construction of a more inclusive vision of the social development of the Totonacapan people, which invites us to reflect on the direction and scope of this response. (shrink)

Low back pain (LBP) carries a high risk of chronicization and disability, greatly impacting the overall demand for care and costs, and its treatment is at risk of scarce adherence. This work introduces a new scenario based on the use of a mobile health tool, the Dress-KINESIS, to support the traditional rehabilitation approach. The tool proposes targeted self-manageable exercise plans for improving pain and disability, but it also monitors their efficacy. Since LBP prevention is the key strategy, the (...) tool also collects real-patient syndromic information, shares valid educational messages and fosters self-determined motivation to exercise. Our analysis is based on a comparison of the performance of the traditional rehabilitation process for non-specific LBP patients and some different scenarios, designed by including the Dress-KINESIS’s support in the original process. The results of the simulations show that the integrated approach leads to a better capacity for taking on patients while maintaining the same physiotherapists’ effort and costs, and it decreases healthcare costs during the two years following LBP onset. These findings suggest that the healthcare system should shift the paradigm towards citizens’ participation and the digital support, with the aim of improving its efficiency and citizens’ quality of life. (shrink)

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

Divus Augustus Pater. The cult of divine Augustus under the rule of the Julio-Claudian dynasty -/- Summary The cult of divine Augustus was one of the most important phenomena of ideological nature under the rule of the Julio-Claudian dynasty. The crucial point of its development was the apotheosis conducted on 17 September 14 AD. The new cult was derived greatly from numerous borrowings from the rites of various gods of the Roman Pantheon. As divus, Augustus received a separate priest, a (...) private priestess, and a college of priests. The first flamen Augustalis became Germanicus. The holder of this title enjoyed many privileges. It seems unlikely, however, that flamen Augustalis controlled the entire cult of divine Augustus. This was the role of the emperor as both the supreme priest and the inheritor of political power. Sodales Augustales also had special cult functions. This religious fraternity had a mixed private-state character just like many of the institutions of the early principate. It was a cult college of gens Iulia and, most of all, of Augustus. From its beginning it enjoyed high prestige. The members of this religious fraternity were recruited among the Senate elite and the family of the emperor. Sacerdos divi Augusti occupies a different place in the priesthood established to worship Augustus. This female priesthood, despite its humble cult and political role, is of great interest to scholars. In spite of discerning investigations by researchers, there seem to have been only two priestesses in the Julio-Claudian dynasty – Julia Augusta, the widow of the creator of the principate, and Antonia Augusta. There is even no certainty that the latter had preformed the function at all. Augustus, as a god, was given a separate temple under a Senate decree. However, the construction work went slowly ahead. Therefore, divus Augustus was initially worshipped in other places of worship. At first, it was the temple of Mars Ultor. He was also worshipped in the sacrarium on the Palatine. One encounters certain difficulties when trying to identify the places of Augustus’ worship in Rome. Ultimately, there seem to have been two sacraria in the capital of the Empire. There is no certainty, however, whether yet another temple was located next to the templum novum divi Augusti on the Palatine. In trying to analyse the phenomenon of the divinity of the Roman emperors, and Augustus in particular, it is necessary to refer to the genesis of Emperor worship. Within the framework of official religion it is important to distinguish such elements as genius and numen. Although the consecratio act conducted by the Senate meant the crossing of the boundary between the human Augustus and the divine Augustus, it is important to remember that Augustus had prepared his apotheosis for a long time and already enjoyed divine honours during his lifetime. Certain elements of Augustus worship developed under his rule continued to exist for some time after the death of the creator of the principate. Augustus divinity was guarded by the law of maiestas. At the beginning of the rule of Tiberius it mostly protected divus Augustus himself. Gradually, despite some opposition, the law began to serve the ruling emperor. There is little certainty of how many cases were brought under the crimen laesae maiestatis against those who insulted the divine Augustus. The issue of trials for offending the law of maiestas is accounted for one-sidedly by ancient historians, which complicates the work of contemporary researchers. There is, however, no denying that for Tiberius (Augustus’ successor) the trials on the charge of maiestas turned out to be a trap. The cult of divus Augustus was approved throughout the Empire. Nevertheless, some weaker voices of opposition could be heard. These were present in the Senate circles cherishing the memory of the last defenders of the Republic, as well as among some ethnic and religious communities. The latter included Judaism and emerging Christianity. The political consequences of Augustus’ deification were very serious. He significantly contributed to the ruling of the Julio-Claudian dynasty for over 50 years. The main reason for that was the fact that in the Rome of that time the tradition of power succession was not yet well-grounded. Directly after the principate creator’s death, his consecratio took place – he was assigned priests and many godly honours and a temple was erected in his honour. These actions obviously took place under Augustus’ successor Tiberius who, during his rule, constantly tried to emulate the divine predecessor and referred to his decrees on numerous occasions. Tiberius was the emperor who contributed to the cult of his adoptive father to the greatest extent. However, one cannot fail to notice that his actions were somehow ambiguous. It has to be remembered that, in addition to his sincere respect for the divine Augustus, Tiberius also tried to use the authority of the creator of the principate to strengthen his power. This is exemplified by the motto imprinted on coins: DIVVS AVGVSTVS PATER. Caligula took a different approach to the Augustan cult. When assuming power after Tiberius, he was in a different position. The 20-year rule by Augustus’ successor greatly contributed to the strengthening of the idea of the principate ’s stability in the minds of the Romans. This allowed Caligula to pay less heed to the Senate aristocracy, as well as other institutional elements of the Republic. Under these circumstances, the cult of Augustus underwent modifications. Divus Augustus still remained at the heart of the religious propaganda of the Roman state and gens Iulia, but also other members of the family of the young Emperor received a number of honours drawing them closer to the world of gods. Drusilla, for that matter, was made a diva. By this, the idea of domus Augusta received a new confirmation. Caligula himself did not cease to participate in, and support, the rites performed to worship his divine grandfather. The available sources lead us to believe that Augustus constituted for the young princeps a role model and a character to which he often compared himself with. For Claudius, the use of the cult of divine Augustus was important as a tool to strengthen political power. But due to the fact that his personal links with divus Augustus were rather weak, Claudius focused on the cult of his grandmother Livia, Augustus’ wife. He also emphasised the function of sacerdos divi Augusti which his mother Antonia Augusta was to fulfil. Claudius faced the task of the ‘reconstruction’ of the cult of Augustus which had deteriorated, especially during the second part of Caligula’s rule. Claudius took a different direction in imitating Augustus than his two predecessors. Augustus’ model was very capacious, allowing him to find examples which could be adjusted to fit his own political goals and personality. Claudius avoided the stiffness characteristic of Tiberius and, at the same time, respected Augustus’ traditions which he Caligula inadvertently abused. Claudius’ attitude to Augustus is not quite clear. Undoubtedly he kept alive the memory of the first princeps, however, there is a lack of testimony about the new honours conferred on divine Augustus during the rule of this Emperor. Almost all of them concentrate around the person of Claudius or his family. There are, however, no honours conferred on the creator of the principate. This type of attitude caused the cult of divine Augustus to be eclipsed by the cult of the ruling Emperor. Nero, the last representative of the Julio-Claudian dynasty descended, unlike Claudius, directly from the line of Augustus. The new emperor deified his predecessor by using the model of Augustus’ apotheosis. In the first part of his rule he drew greatly from the Augustus model of exercising power. Nero ’s ideological platform seems to be the richest in comparison with other emperors of the Julio-Claudian dynasty. The tradition of links with divus Augustus was, however, only one of many different elements. With time, the tradition appeared to play a still smaller role. The departure from the Augustus model took place on many levels. Some of the steps were very radical, whereas others were less significant. The most serious was the elimination of the members of gens Iulia and gens Claudia, and those who could prove their kinship with both the houses. The devastation in Nero ’s closest family put an end to the concept of domus Augusta. Formally, the Emperor did not renounce the divine creator of the principate but, in practice, the idea of the new domus Augusta no longer aimed at presenting Augustus’ descendants united in a single family. Nero was now alone and any creation of ideological concepts of power under those circumstances had to be based around him. These actions ended in disaster. By giving up the Augustan model, Nero lost the support of the army and, as a result, lost power. Apart from the worship of the state religion in the capital, divus Augustus was the subject of a provincial and municipal cult. Here, the worship of divine Augustus was often a continuation, sometimes in an extended form, of the honours Augustus had been granted during his lifetime. In the cult of divus Augustus, in the provinces one can observe a mutual interweaving of elements copied from the capital model and local traditions. The beginning of the provincial cult of Augustus dates back to the rule of Tiberius. The crucial point for the establishment of the provincial cult in the West was the request of the citizens of Hispania Tarraconensis to build a temple for divine Augustus. It is important to emphasise here that he was appointed on a local initiative. In the East, the genesis of the provincial cult is related to the functioning of koinon. In comparison with the western regions, the cult here was characterised not only by longer history but also an extensive system of priesthood and rich ritual. The intensity of development of municipal and private cult in the West depended on the level of social and economic development of the regions. It assumed the most complex forms in the provinces with well-developed city life – generally in the eastern provinces. Whereas the cult of divine Augustus in the western municipal provinces was similar in character to the cult of the principate’s creator in Italy. The greatest testimony to the cult’s development comes from relatively strongly romanised and, at the same time, the wealthiest regions which had been part of the Empire for a long time. These included the mainly proconsular Africa, Spain and Narbonese Gaul. The sources coming from these regions constitute not only an illustration of the development of the cult of divine Augustus and members of domus Augusta, but are also a sign of the processes of romanisation of great numbers of city populations. It is necessary to note that outside Rome we do not encounter an isolated cult of divine Augustus. Whenever we deal with information concerning temples or rituals dedicated to the deified creator of the principate, other members of the family are also worshipped. In fact, during the whole rule of the Julio-Claudian dynasty we actually deal with the cult of divine Augustus in close association with the worship of domus Augusta – domus divina. (shrink)

Recent years have seen increased interest among 4E cognition scholars in physical disability, leading to the development of the EE-model of disability. This paper contributes to the literature on disability and 4E cognition in three key ways. First, it examines the relationship between the EE-model and social constructivist views that address the bodily reality of disablement, highlighting commonalities and distinctions. Second, it critiques the EE-model’s focus on individual strategies for expanding disabled persons’ affordance landscapes, arguing that (...) disability policy should integrate insights from both the EE-model and social constructivist approaches. Finally, it assesses the EE-model against the 'dogma of harmony'. We argue that while the EE-model’s focus on active human-environment collaboration is valuable, it can inadvertently perpetuate this dogma. We contend that integrating certain social constructivist insights can help the EE-model avoid the dogma of harmony. (shrink)

The article discusses the actual problem of social support for people with mental health problems, which has an important place in the study field of social psychology and social work.The article also deals with the definition of the concept of “mental health”, the problem of introducing the term “mental health problems” as a way to avoid stigmatization, and the spread of a humanistic attitude to persons with a psychiatric diagnosis. It also discussed modern theoretical approaches that offer an understanding of (...) the contribution of biological, social, and psychological factors into the cause of mental health problems. -/- The problem of mental illness is common to all countries of the world, as WHO data evidenced the number of people with mental disorders among the world’s population, ranging from 4–5 %. According to researchers P. Voloshin and N. Maruta, the spread of mental and behavioral disorders in Ukraine is characterized by a slow increase of about 2.9 % in every 10 years. Researchers argue that in subsequent years, according to the prognostic data, there will be an increase in these indicators. The issue of providing social support to people with PDS in Ukrainian society is very relevant, which is complicated by their social isolation in the process of recovery after the treatment. The results of scientific research in the context of different cultures and relatively diverse life events (hospitalization, mental illness, unemployment, old age) generally confirm the positive results of using social support to promote mental and physical health. Instead, there are no studies in Ukrainian science related to the phenomenon of social support of people with mental health problems. -/- It is important to define the concepts of “mental health” and “mental health problems” in the process of studying the features of social support for people with mental health problems. The term “mental health” combines the medical and psychological fields of science and practice, but modern psychology offers a comprehensive approach to assessing the psychological health of a person, the psychological norm, its limits, taking into account the criteria of mental health. The description of the mental health given by the Psychological Dictionary points out the components of awareness and the sense of continuity, continuity and identity of their physical and mental “I”; sense of continuity and identity of experiences in similar situations; critical to yourself and your mental activity and its results; the adequacy of psychic reactions of force and frequency of environmental influences; the ability to manage their behavior in accordance with social norms; planning personal activities and implementing them; changing the way of behavior depending on the changing circumstances of life. -/- The concept of “mental health problem” was taken as a term that denotes all the symptoms classified in ICD-10 and DSM-IV, which are recommended by experts to clients for appropriate treatment and care. Scientists and mental health practitioners point out that mental health problems can affect the way an individual thinks, feels, and behaves; affects self-service, fulfills professional duties, social, family roles, and household behavior, which is usually deeply affected by the quality of life of the individual. Numerous results of the research show that there are specific psychological and personality factors apart from the biological causes of mental disorders (genetic factors that contribute to the imbalance of chemicals in the brain) that make people vulnerable to occurrences of the mental health problems. -/- Several modern theoretical approaches offer an understanding of the contribution of biological, social, and psychological factors to the induction of mental health problems: the traditional medical model, the rehabilitation model, the interface model, the social model, and the biopsychosocial approach. Only biopsychosocial and social models are consistent with the definition of WHO disability and emphasize the impact social aspects of mental health and the quality of life of people with mental health problems. -/- Individuals with PPP, as a social community, have specific needs that differentiate them from other members of society, one of which is the need for constant socio-psychological support. So, the contribution of psychology and social work to the quality of life of people with mental disorder lies in the application of professional approaches and methods based on the biopsychosocial (social) model, which emphasize the need for socio-psychological support. An example of such a technique is the model of modern social work practice “people-in-environment”, which serves as a guiding principle of social work and emphasizes the importance of understanding the persons with disorder and their behavior in the light of the multiple context of the social environment in which these persons live and act. Specialists of social work and psychology make interventions at three levels: individual, at the family level, and at the community level, by means of intensifying the support of the environment within the cognitive-behavioral and other approaches, which contribute to the process of reintegrating people with mental health problems into community. (shrink)

There is an ongoing and robust tradition of science and technology studies scholars conducting ethnographic laboratory studies. These laboratory studies—like all ethnographies—are each conducted at a particular time, are situated in a particular place, and are about a particular culture. Presumably, this contextual specificity means that such ethnographies have limited applicability beyond the narrow slice of time, place, and culture that they each subject to examination. But we do not always or even often treat them that way. It is beyond (...) common for us to speak about what one or another laboratory study reveals about the laboratory, or “science” much more broadly. Given the contextual specificity of our ethnographic laboratory studies, what justifies this presumed generalizability? Initially, this manuscript surveys typical responses to this question, but then it pursues an unusual one: the potential replicability of ethnographic results. This potential is hereby explored, via an ethnographic replication attempt—one designed and conducted in order to test the generalizability of a particular laboratory study, that of Latour and Woolgar’s classic Laboratory Life. The results of the ethnographic replication attempt are reported, and a remarkable degree of replicability is established. (shrink)

Qualitative evidence concerning the relationship between QoL and a wide range of disabilities suggests that subjective judgments regarding other people’s QoL are wrong more often than not and that such judgments by medical practitioners in particular can be biased. Guided by their desire to do good and avoid harm, surgeons often rely on "the eyeball test" to decide whether a patient will or will not benefit from surgery. But the eyeball test can easily harbor a range of implicit judgments and (...) biases against patients with disabilities, including erroneous assumptions about QoL. We critique the use of the "eyeball" test and offer suggestions to reduce bias and ensure that patients’ values are more consistently prioritized in surgical decision-making. (shrink)

The view that it is better for life to be created free of disability is pervasive in both common sense and philosophy. We cast doubt on this view by focusing on an influential line of thinking that manifests it. That thinking begins with a widely-discussed principle, Procreative Beneficence, and draws conclusions about parental choice and disability. After reconstructing two versions of this argument, we critique the first by exploring the relationship between different understandings of well-being and (...) class='Hi'>disability, and the second by more briefly focusing on the idea of a significant reason. By placing these results against the broader historical and ongoing contexts in which the lives of those with disabilities have been deemed of inferior quality, we conclude with a call for greater humility about disability and well-being in thought and practice. (shrink)

In recent years, an array of critical emotion theorists have emerged who call for change with respect to how emotion theory is done, how emotions are understood, and how we do emotion. In this chapter, I draw on the work that some of these authors have produced to analyze how emotional marginalization of trans and disabled identities is experienced, considering in particular how this emotional marginalization results from the long history of pathologization of trans and disabled people. The past (...) and current pathologization of trans and disabled people is produced through normative assumptions, values, and beliefs that uphold systems of normalcy, including assumptions, values, and beliefs about how we feel and express emotions. In order to examine these issues, I identify three different stages at which emotional marginalization may take place: emotion experience, emotional display, and emotion recognition. In other words, emotional marginalization of trans and disabled people can occur at any of these stages. The central concern of my chapter is thus to show how emotional marginalization, at each of these stages, affects trans and disabled people. (shrink)

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

According to a popular line of thought, being excluded from interpersonal life is to be exempted from accountability, and vice versa. In ordinary life, this is most often illustrated by the treatment of people with serious psychological disorders. When people are excluded from valuable domains on the basis of their arbitrary characteristics (such as race and sex), they are discriminated against, prevented from receiving the benefits of participation in those domains for morally irrelevant reasons. Exemption from accountability—via exclusion (...) from the interpersonal domain—seems to prevent exempted parties from receiving crucial human goods for morally irrelevant reasons. This chapter discusses two widely deployed ways of trying to ameliorate morally costly disabilities. Both fail to apply viably to various psychopathologies. The solution involves disentangling accountability and interpersonality in a way that also provides insights into our shared human nature. (shrink)

In the intersection between eugenics past and present, disability has never been far beneath the surface. Perceived and ascribed disabilities of body and mind were one of the core sets of eugenics traits that provided the basis for institutionalized and sterilization on eugenic grounds for the first 75 years of the 20th-century. Since that time, the eugenic preoccupation with the character of future generations has seeped into what have become everyday practices in the realm of reproductive choice. As (...) Marsha Saxton (2000) and Adrienne Asch (2000, 2003) have forcefully argued, the use of prenatal screening technologies to facilitate the selective abortion of fetuses with features that signify disabling traits—the paradigm here being trisomy 21 in a fetus indicating Down Syndrome in the child—express a negative view of such disabilities sufficient to warrant terminating an otherwise wanted pregnancy. The eliminative structure of what Rosemary Garland Thompson (2012) has called eugenic logic persists in contemporary practices governing reproductive choice, social inclusion, and democratic participation and their relationship to disability. The tie between eugenics and contemporary disability studies suggests that eugenics and reflection on its history can also play a more positive role in disability politics. After focusing on eugenics in the first half of the paper, we will shift in the second half of the paper to eugenic resonances in contemporary thought and practice, concluding with some thoughts about ongoing practices of silencing and the very idea of eradicating disability. (shrink)

The question of how disability affects wellbeing has occupied a number of philosophers in recent years. However, this literature has proceeded without a careful examination of the fairly vast empirical research on the topic. In this paper, I review the scholarly literature and discuss some philosophically-relevant aspects of it. On average, those with disabilities have a significantly lower level of wellbeing than those without disabilities. Furthermore, there is strong evidence that this reduction in wellbeing is not due entirely (...) to ableist factors. Hence, I argue that it shows that the Mere Difference View of disability is most likely false. However, the literature indeed shows that disabled people typically live good lives. Thus, despite its rejection of the Mere Difference View, it still upholds a disability-affirmative view. These findings allow for a measured critique of some of Peter Singer’s writings on disability. (shrink)

Some parents have taken steps to ensure that they have deaf children, a choice that contrasts with the interest that other parents have in enhancing the traits of their children. Julian Savulescu has argued that, morally speaking, parents have a duty to use assisted reproductive technologies to give their children the best opportunity of the best life. This view extends beyond that which is actually required of parents, which is only that they give children reasonable opportunities to form and (...) act on a conception of a life that is good for them. Does the selection of deaf children violate that responsibility? Morally speaking, parents should refrain from using assisted reproductive treatments or prenatal interventions in order to have a child with a disability. Deafness and other disabilities represent intrinsic disadvantages that cannot be offset by other advantages that families and society can offer to people. By the same token, neither should parents seek enhancements of intelligence or physical traits that would undercut intrinsic goods of human life in similar ways. These moral arguments do not, however, sustain the judgment that the law should necessarily interfere with parents' decisions in these matters, even if those choices are morally unwise. (shrink)

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

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

Disability has been a topic of heightened philosophical interest in the last 30 years. Disability theory has enriched a broad range of sub-specializations in philosophy. The call for papers for this issue welcomed papers addressing questions on normalcy, medical ethics, public health, philosophy of education, aesthetics, philosophy of sport, philosophy of religion, and theories of knowledge. This issue of Essays in Philosophy includes nine essays that approach the philosophy of disability in three distinct ways: The first (...) set of three essays provide a careful analysis of John Rawls, and the application of his work in ethics and justice to societies in which persons with disabilities, especially cognitive disabilities, can take active part in the processes of civil society. The second set of three essays branch out into continental philosophy, and are especially engaged with issues of community membership, communication, translation, and hermeneutics. The third set of three essays address disability specifically through the arts and aesthetics; asking questions on the portrayal of disabled persons in the arts and its implications for normalcy, sexuality, beauty, and the sublime. (shrink)

I am grateful to Philip Reed for his article ‘Expressivism at the Beginning and End of Life’. His piece compellingly demonstrates the import of expanding analyses concerning the expressivist thesis beyond the reproductive sphere to the end-of-life sphere. I hope that his intervention spurns further work on this connection. In what follows, I want to focus on what I take to be moments of slippage in his use of the concept of disability, a slippage to which many (...) disability theorists succumb. In short, I argue that there are crucial moments in his argument where Reed runs together cases of disability that should be kept distinct—at minimum for the context in which he discusses them. Namely, forms of disability the suffering of which justice can eliminate versus those that ‘no amount of accessibility and social justice could eliminate’. (shrink)

Research and practice about self-determination in the context of disability has centred on teaching skills and providing support to help people with impairments to be independent. However, limited research exists about the impact of Information and Communication Technologies, in particular social media and mobile devices, on the development of self-determination skills among people with disabilities. This paper presents the findings of a qualitative study which collected data from observations, a researcher diary, focus groups, individual interviews and data from social (...) media. The focus of the study was on young people with vision impairments who were transitioning to university life. The study found that the participants developed self-determination skills by using and adapting collaborative and interactive online tools and mobile devices according to their transition needs. This finding expands the understanding of the implications of new technologies for young people with disabilities’ personal development and the enhancement of self-determination. (shrink)

The COVID-19 pandemic highlighted the importance of internet access across various aspects of life, from remote work and online education to healthcare services and social connections. As we transition to a post-pandemic era, a pressing need arises to update our understanding of the multifaceted nature of internet access. This study is one of the first attempts to do so. Using survey data from New Zealand adult internet users (n=960), it compares internet connection types, frequency of internet use at home, (...) social media use, and concerns about online risk between people with and without disabilities. Results show people with disabilities have restricted fibre access and higher wireless broadband (a much slower connection type). People with disabilities use social media platforms less and are more concerned about certain online risks. The findings highlight persistent disparities in internet access for people with disabilities in the post-pandemic era. Implications of the study are discussed. (shrink)

Insofar as many older adults fit some definition of disability, disability studies and gerontology would seem to have common interests and goals. However, there has been little discussion between these fields. The aim of this paper is to open up the insights of disability studies as well as philosophy of disability to discussions in gerontology. In doing so, I hope to contribute to thinking about the good life in late life by more critically reflecting (...) upon the meaning of the body, ability, and the variability of each. My central argument is that we should conceptualize age‐associated bodily variations and abilities not in terms of individual capacity, but in terms of what I call “the extended body.” It is in light of the meaning of embodiment and ability in general that we must think differently and more capaciously about the meaning of late life in particular. (shrink)

In recent decades, the intertwining ideas of self-determination and well-being have received tremendous support in bioethics. Discussions regarding self-determination, or autonomy, often focus on two dimensions—the capacity of the patient and the freedom from external coercion. The practice of obtaining informed consent, for example, has become a standard procedure in therapeutic and research medicine. On the surface, it appears that patients now have more opportunities to exercise their self-determination than ever. Nonetheless, discussions of patient autonomy in the bioethics literature, which (...) focus on individual patients making particular decisions, neglect the social structure within which health-care decisions are made. Looking through the lens of disability and informed by the feminist conception of relational autonomy, this essay argues that the issue of autonomy is much more complex than the individualist model suggests. The social system and the ableist ideology impose various forms of pressure or oppressive power that can affect people’s ability to choose according to their value system. Even if such powers are not directly coercive, they influence potential parents’ decisions indirectly—they structure their alternatives in such a way that certain options are never considered as viable and other decisions must be made. This paper argues that, instead of only focusing on the individual act of decision-making, we need to pay attention to the social structure that frames people’s decision. (shrink)

On January 30, 2020, the World Health Organization declared a Public Health Emergency of International Concern (PHEIC) over what would quickly become known as SARS-CoV- 2 or COVID- 19. This emergency status was officially ended in the United States in May 2023 amidst much dissent and debate. Although emergency conditions resulting from COVID- 19 will likely wax and wane over the coming years, there is good reason to think that the incidence of severe global pandemics will increase over the (...) next century, as will declarations of emergency. The declaration of an emergency calls for urgent action, but it just as urgently demands careful reflection. Official “emergency” status licenses unparalleled executive intervention, completely reorganizing the lives of those who live under its decree. Such official recognition, however, is heavily dependent on the social context in and from which the emergency arises. Highlighting which circumstances rise to the level of an official emergency clarifies our reigning assumptions about what threshold of active harm—and in relation to which groups of people—demands immediate intervention. (shrink)