“Where’s the human dignity in that?”: LGBTQIA + people with intellectual disability exploring sexual lives and respectful relationships

Abstract

For people with disabilities, sexuality remains a contested and restricted space. This research investigated how the Sexual Lives & Respectful Relationships (SL&RR) program might be adapted for people with intellectual disabilities who identify as LGBTQIA+. The program included co-developed materials and specifically curated narratives. It was received positively. The facilitators identifying as members of the LGBTQIA+ community was also reported as positive. While an inclusive program might be ideal, participants expressed the view that community attitudes (including those of other people with intellectual disability) might not yet be conducive to integrated human relationships programs.     

Treating the 'idiot' child in early 20th-century Ontario

The late 19th and early 20th centuries witnessed the widespread construction of institutions for individuals with intellectual disabilities. Consequently, most historical research into the history of intellectual disability has focused on medical interventions performed inside these quasi-medical institutions. Recently, however, there has been new interest in community options that existed at the same time and the way in which community care and formal institutions interacted. This paper explores these issues in the context of early 20th century Canada. It will demonstrate that families of 'idiot' children sought different types of treatments and care in order to remedy their child's behavioural difficulties and learning delays. In many cases, families resorted to applying for their child's admission to the then largest 'idiot' institution in Canada, the Orillia Asylum. However, these admissions often occurred after lengthy and often exhaustive attempts by families to find alternatives to the institution and, indeed, to formal medical treatment.     

Strategy,local sociology,political philosophy: Analysis of strategy of Non‐Governmental Organizations under radical intellectual leadership

The study discusses the relationship between NGO strategy (both toward government and community), contextual conditions, and the sociological and political‐philosophic background of the leaders of the organization. The empirical section focuses on a specific Israeli NGO (Bimkom) led by a radical‐intellectual leadership whose aim is to promote the interests of poor communities. The organization under research activated a dual complex strategy, one that both criticizes and negotiates with the government, at the same time advocating for and empowering communities. The study points to a clear linkage between that strategy and leaders' own background. In fact, the latter served as a source from which the leaders carved out guidelines, perceptions, policy tools, and abstract resources (which in turn also affected outcomes). On a basis of these findings, the study suggests a model designed to improve the analysis of strategic management.     

The conceptualization and measurement of quality of life: implications for program planning and evaluation in the field of intellectual disabilities

The concept of quality of life (QOL) is increasingly being used in the field of intellectual disabilities as a conceptual and measurement framework for program planning and evaluation. This article describes the development of a QOL conceptual and measurement framework, and summarizes how this framework is currently being used both nationally and internationally to assess and report personal QOL-related outcomes, to guide quality improvement strategies, and to evaluate the effectiveness of those strategies. Implications of such use are discussed, including those related to understanding mental models, developing internal data systems, supporting organization change, and building on current public policies. The article concludes with reference to the evolving nature of the QOL concept and the impact of this on model development and transdisciplinary research.     

Life histories as counter-narratives against dominant and negative stereotypes about people with intellectual disabilities

The history of intellectual disabilities is largely a story of discrimination and social exclusion portraying people with intellectual disability as abnormal and inferior. This article describes a particular methodological approach to inclusive life history research with a small group of women with intellectual disabilities in Iceland. The article documents how, through a four-year collaborative research process, the life histories became counter-narratives to dominant historical beliefs and stereotypes. In addition to the personal empowerment of the women and the construction of a collective memory, this project has also resulted in public sharing of their stories through speaking up and giving presentations, and thus potentially also changing the historical memory.     

Health care for an immigrant nation: Policy and practice in Australia

Australia is one of the most multicultural nations on earth. Over 100 different languages are spoken by Australians in the normal course of their lives. 20% of its population was born in another country and 24% of Australians have one or both parents born overseas. It is within this socio‐demographic context that Australia has developed its social and institutional policies of multicultur‐alism provided the intellectual capital and impetus for the creation of a Migrant Health Policy. The latter, in turn, is responsible for the operational policies about language, culture, information marketing and agency operations, which govern the nature and extent of health care services to the community. This paper provides a historical view of the role of immigration in Australia's development, explains the policy creation process, its antecedents and its service outcomes, and concludes with a summary of the major challenges which confront the health care system in its quest to provide equitable, relevant and responsive services to a multilingual and multicultural community.     

A Critique of Occidental Geist: Embedded Historical Culturalism in the Works of Hegel, Weber and Huntington

Abstract  The comparative studies of world religions have been a distinctive part of Western thought. Hegel's contribution to the philosophy of history is most clearly seen where he introduces a theory of historical development based on the secularisation of Christian cosmology. With Hegel, the Spirit ( Geist ), previously theologically understood, gradually becomes the embodiment of historical development. In the Hegelian vocabulary, the phenomenology of religion is formulated along with the theory of historical progress. In this article, I will argue that the question of historical development has been continuously elaborated in a culturalist fashion in works of Friedrich Hegel, Max Weber and Samuel Huntington as those scholars, through different intellectual traditions, essentialises the spiritual backgrounds of world religions and ties the phenomenology of religion with the philosophy of history in their historical analyses. This paper will argue that these scholars, by relying on the idealised images of religions and particularly of the Occidental Spirit, subtly elaborate the historical culturalist notion of development within Western thought. By arguing for an inherent link between religion and development, these scholars implicitly institutionalize a Eurocentric understanding of Western Christianity and the Occidental path of development within mainstream social theory. Be they philosophical (Hegel), sociological ( Weber ) or political (Huntington), the historical culturalism of these approaches shape our understanding of historical change, and ironically, instead of countering the excesses of crude materialism, they lead social theory into a form of Eurocentic historical culturalism.     

Who Shall Decide? The Relevance of Theory and Research to Decision-making by People with an Intellectual Disability

In the context of normalisation and rights recognition, capacity for decision-making by people with an intellectual disability has emerged as an important but potentially contentious issue. Although increased community integration has opened up many new options, opportunities for greater autonomy are still unnecessarily constrained. Perceptions of limited competence, the issue of who has control over choices, and organisational structures are some of the factors which influence the extent to which clients are able to make decisions. This paper argues that, in order to resolve these issues, decision-making by people with an intellectual disability should be studied within the broader context of psychological theories of decision-making and human behaviour. Theoretical findings are reviewed and areas identified in which decision-making behaviour may break down. The relevance of theoretical research to issues of competence and empowerment, and to the small body of research on decision-making and choice by people with an intellectual disability is discussed. It is concluded that future research should focus on contextual variables, including the nature of the decision to be made, which affect decision-making competence in people with an intellectual disability.     

Uncertain citizenship and public deliberation in post‐apartheid South Africa

The post‐repressive‐regime South African government has actively convened a public sphere bristling with institutions and policies designed to facilitate public deliberation. However, certain apartheid legacies and contemporary political compromises facilitate the reach of power into the convened public sphere, leading to the corralling of public deliberation and the attempted silencing of critical voices. By the end of the Mbeki presidency, a cacophony of public dissent erupted, some of it insisting on the importance of open public critique and some of it seeking to limit and shape dissent itself. The article discusses ongoing contests over the meaning of publicness, locating the roots of these different ideas of publicness in different political and intellectual traditions, each with different understandings of the deliberative citizen. It suggests that participation in public debate is increasingly confined to the exertion of a narrowly defined notion of national democratic citizenship. Arguing that the formation of counterpublic spheres in South Africa is inhibited, the article considers the role of what it terms ‘capillaries’ of public deliberation, in which various kinds of radical critiques of cultural values, norms, identities and the fragmentation of historical consciousness take place.     

Quality of life in the evaluation of community support systems

As a result of the authors' experience in conducting an evaluation of the community support system (CSS) program in New York State, they have identified five reasons for focusing on quality of life (QOL) as a desired outcome for programs for the chronically ill. These reasons are presented and problems in QOL evaluative research are discussed. Psychological indicators are distinguished from social indicators of QOL, and two methods of operationalizing perceived QOL, the psychological well-being and life domains methods, are examined. A conceptual model is presented and the results of an exploratory study of the QOL of 118 chronic psychiatric patients receiving CSS services are presented.     

The identities and social roles of people with an intellectual disability: challenging dominant cultural worldviews,values and mythologies

Intellectual disability is commonly conceptualised as stigmatised identity with which one has to live. However, within the literature the notion of a damaged identity is contested. The aim of this research was to explore the social construction of intellectual disability, with an emphasis on the identities and social roles of people with an intellectual disability. Informed by a contextualist perspective, this research was conducted within a participatory framework. The co-researchers involved in this research were 18 members of an advocacy agency. Photovoice and conversational interviewing were used to collect data and causal layered analysis was used to deconstruct the data. Analysis of the interactions that emerged across the causal layers revealed a complex dynamic of worldviews which served to construct people with an intellectual disability as incompetent, inherently different and not quite human. For genuine, transformative change to occur, developing an awareness and understanding of social processes, such as dehumanisation, is crucial.     

Development of Parenting Skills in Individuals with an Intellectual Impairment: an epigenetic explanation

Current changes in legislation in the United States support the rights of individuals with an intellectual impairment to marry and have children. Current societal views, however, are heavily influenced by our history of viewing these individuals as inadequate parents. This historical view is based upon the assumption that those with intellectual impairments are genetically inferior. Changing views of development, however, suggest that the issue of how individuals with intellectual impairments develop is somewhat more complex. The epigenetic model is one that proposes that development is the result of the complex transaction between the individual and the environment. This paper applies this model to persons with an intellectual impairment to better understand the parenting skills they display. It is argued that by intervening and changing developmental pathways, the development of parenting skills of those with intellectual impairments can be facilitated.     

Inventing the axial age: the origins and uses of a historical concept

The concept of the axial age, initially proposed by the philosopher Karl Jaspers to refer to a period in the first millennium BCE that saw the rise of major religious and philosophical figures and ideas throughout Eurasia, has gained an established position in a number of fields, including historical sociology, cultural sociology, and the sociology of religion. We explore whether the notion of an “axial age” has historical and intellectual cogency, or whether the authors who use the label of a more free-floating “axiality” to connote varied “breakthroughs” in human experience may have a more compelling case. Throughout, we draw attention to ways in which uses of the axial age concept in contemporary social science vary in these and other respects. In the conclusion, we reflect on the value of the concept and its current uses and their utility in making sense of human experience.     

The ideology of neuroscience and intellectual disability: reconstituting the ‘disordered’ brain

During the last two or three decades, neuroscience has changed how we understand brain functioning. This shift, which is re-conceptualizing the relationship between the materiality of the brain and consciousness, is bound to have implications for intellectual disability, which is commonly seen as a condition of the brain. At present, examinations of intellectual disability that deploy techniques and concepts from neuroscience constitute a growing research field that has been welcomed in some quarters of the disability research community. The purpose of this article is to urge for caution as regards this development. I argue that the neuroscience of intellectual disability is embodying ideological propositions that need to be problematized. By theorizing the relationship between biology and politics and examining neuroscientific publications on intellectual disability, I argue that this strand of research is underpinned by a discursive division between normal and pathological, that it therefore constitutes a continuation of understanding intellectual disability as a ‘disorder’ and that any firm separation between the ‘nature’ of intellectual disability and processes of power is inherently problematic. To be able to critically approach the neuroscience of intellectual disability, it is vital that disability researchers problematize the relationship between biology and politics.     

Managerial audit and community mental health: a study of rationalising practices in Finnish psychiatric outpatient clinics

In many European welfare states the reform of mental health services has been accompanied by the implementation of new forms of governance, including the introduction of managerial audit systems. While such systems have been developed for ‘good causes’, such as quality assurance, financial management and monitoring staff performance, they may simultaneously produce diverse and contradictory effects on practice. The aim of this article is to examine the role of one managerial audit system, introduced in psychiatric outpatient clinics in central Finland, and assess its impact on practice. Reference is made to modernising mental health policy in the UK as that has producedsimilar practics outcomes. The research was an empirical study of practice using a mixed-method case study design involving documentary research and semi-structured interviews. Insights from Mitchell Dean's notion of governmentalisation of government were utilised in the analysis. It was found that, although the audit system primarily served administrative needs, it began to reshape practice by reinforcing certain modes of working and excluding others. The analysis of community mental health work in Finland, with similar trends in the UK, highlights the connection between documentation, resource allocation and managerial priorities that reinforce particular styles of practice. In community mental health services it would appear that the problems of professional practice have become the problems of administration.     

The Ministry of Culture in Syria: history,production and restriction of official culture

The official aspect of Syrian culture has been for long shaped and controlled by wizarat al-thaqafa, or the Ministry of Culture in a country whose government for long prided itself as culturally progressive. The history of this important government department reflects the political developments of the country, and the cultural activities and materials it produces deeply influence the intellectual development of Syrian society. I argue in this article that even though the Ministry is part of the Syrian government and regime, it attempts to be a more independent and democratic enterprise that produces a great deal of cultural resources and allows artistic and intellectual spaces for the Syrian public. Many Syrian voices of dissent were provoked by the performance of the Ministry which is often viewed as an extension of the leading Ba’ath Party and its outdated literature and ideologies. This Ministry has impacted cultural movements within Syria, regardless of being sponsored by the regime, which has attempted to control public and private media outlets and the educational system to pass its discourse to the public. This paper shows that the Ministry of Culture has successfully escaped serving as a mouthpiece for the party and how the ministry’s role in Syrian cultural development goes beyond offering legitimation to the regime in exchange for institutional support. It also aims to demonstrate how the way we view and understand cultural outputs in Syria enables us to comprehend the complexities of the country.     

Unfeeling knowledge: Emotion and objectivity in the history of sociology

The theoretical concern of this paper is with the relationship of gender, personal life, and emotion to the social construction of sicentific knowledge. I examine this question through biographical research into the life and work of William Fielding Ogburn (1886–1959), a major figure in the history of American sociology. Ogburn believed that emotion was inimical to science and that statistics could help control what he considered to be its distorting effects. My analysis suggests that there was a personal component, reflecting Ogburn's search for masculinity, to the development of his ideas about how scientific sociology should be defined and practiced. I also suggest that Ogburn's ideas were favorably received by his mostly male audience because they spoke to broad cultural and historical currents. My analysis shows the need for a view of scientific knowledge that takes into account the effects of gender relations and emotion on intellectual activity.     

Advancing social inclusion in the neighbourhood for people with an intellectual disability: an exploration of the literature

The shift from segregated facilities to community settings did not automatically lead to social inclusion for people with an intellectual disability (ID). Policies are increasingly decentralized but little is known about the factors that are important to realize social inclusion in the neighbourhood. This literature study identifies five domains barriers and facilitators for social inclusion in the neighbourhood: individual characteristics, informal network, professional care, neighbourhood characteristics, and government policies. The findings suggest that social inclusion in the neighbourhood is a dynamic process that shows a series of complex interactions between environmental factors and personal characteristics to provide opportunities for people with an ID. It is recommended to include the perspectives of people with an ID and other neighbourhood residents in future research on social inclusion. Specific attention is needed for the role of neighbourhood social capital in achieving social inclusion in the neighbourhood.     

The Woodwork Effect in Medicaid Long-Term Services and Supports

This paper examines annual real per capita Medicaid long-term services and supports (LTSS) expenditures (in 2010 $) over the period 1995 to 2010. Medicaid community LTSS expenditures increased substantially. If that trend constituted a woodwork effect, expenditures on institutional services should have declined more slowly than community expenditures increased, resulting in total expenditures increasing over time. Such a woodwork effect is observed for the population with intellectual and developmental disabilities (IDD) but not for the non-IDD population, composed of persons with disabilities other than IDD, including older persons. During this time period, the goals for serving people with IDD changed; institutional and community cost-neutrality rules were relaxed (and with that concerns over a woodwork effect), and instead goals of community involvement and participation were emphasized for all eligible persons. For the non-IDD population, tighter adherence to cost-neutrality rules and controls over nursing home reimbursements may have helped avoid a woodwork effect as community expenditures increased. With the passage of the Americans with Disabilities Act in 1990, goals have changed for people with disabilities of all ages, and the notion of a simple trade-off between institutional and community service costs that constitutes the woodwork effect must be complemented with a much broader idea of cost analysis that values independence and community participation for people with disabilities of all ages.