Lives Of Disabled People Research Articles

Oliver Sacks: The P.T. Barnum of the Postmodern World?

The historic problem in representing disabled people's lives has always been the control of that representation. When others speak for the disabled, they often point the way to the freak show and the medical theater, two arenas of human objectification. The freak show, which flourished well into the twentieth century, depended on the spectacular mystification of disability; promoters exhibited disabled people as wondrous creatures of stupefying difference. Medical discourse has been fairly credited with killing off the freak show by rendering its fantastic displays in prosaic terms as medical anomalies. 1 But in place of the freak show's alienating presentations, medicine has substituted a different kind of objectification, reducing disabled people to case studies of their "defects" and turning them into props in a theatrical display of pathology. Typically, contemporary narratives of disabled lives treat the freak show and the medical case study as Scylla and Charybdis--the author usually designs a course to avoid them, often seeking to repudiate one or both along the way. Within this conventionally straitened genre, Oliver Sacks is a one-man countertrend. Rather than setting a course between the freak show and the case study, he has combined aspects of both. And, as I will suggest, his still-evolving methodology has become increasingly collaborative within these parameters. [End Page 326] * * * Sacks's project becomes clearly visible in his second book, Awakenings, the account of his work in the late 1960s and early 1970s with a sanitarium population of people who were paralyzed by a strain of encephalitis during and after the 1918 influenza epidemic. 2 When Sacks (who is a neurologist) gave his group of post-encephalitics L-DOPA, a dopamine replacement therapy which was an experimental drug, the patients "woke up" in dramatic fashion, startling doctors with their sudden vitality. 3 The result was a kind of joyful bedlam in the chronic ward. Patients who had been silently cohabiting for decades could suddenly speak to each other, and to their loved ones. Sacks says that everyone "was caught up with the emotion, the excitement, and with something akin to enchantment, even awe" (xxiv). I want to emphasize the collective nature of this experience. As Sacks puts it in a long footnote, "there were fifty 'awakenings'" at one time, leading to "a camaraderie" where "they discovered, they delighted in, each other as people. . . . There was communal health, all that summer . . . and an elation of shared hope" (65). The decline also happened in concert: "Every setback in a patient aroused fear in the others . . . fear and helplessness spread like a contagion through the ward" (65). In sum, "I did not have fifty, isolated, insulable patients; I had a community which was like a single living organism" (66). Given this collectivity, how revealing is the way that Sacks organizes his material in his book. Following some prefatory remarks on the circumstances of the situation (the disease, the drug, and so forth) and the uniqueness of what is to follow, he presents twenty consecutive individual case studies of his most memorable patients, including observations of physical appearance and some of their more fantastic disease- and drug-aided behaviors. (An example: before L-DOPA, there was a patient who would have "counting crises," where she would have to count to a number like 95,000, or raise 15 to the seventh power, before she could sleep [131]; after L-DOPA, she was at one point able to speak five hundred words a minute without missing a syllable [136].) Clustered together in the middle of the book, these case studies represent, in Sacks's words, "the true and unassailable centre of Awakenings" (xxxiv). A comparison of the layout of the book with the architecture of a typical freak show yields some striking structural similarities. The [End Page 327] talker outside the tent would tout the show, promising thrills from the oddities inside, coaxing the customer through the entrance. Once inside, the...

Disability, Geography and Ethics

In recent years geographers have started to re-engage with issues of exclusion, social justice and moral philosophy, first explored by radical geographers in the 1970s. This re-engagement parallels the rapid growth in the 1990s of feminist and critical geographies. Geographers within these traditions have focused their attention on the intersection of issues such as identity, difference and space, and the ways in which socio-spatial processes reproduce material and non-material inequalities. Empirical and theoretical work has focused on a range of specific issues such as gender (patriarchy), race (racism), sexuality (homophobia) and class. To this list has recently been added disability (ableism). However, most critical geography research has concentrated on examining the production and maintenance of geographies of social exclusion. Only a small number of studies have engaged directly with these issues in the context of specific theories of social justice and moral philosophy, which are seemingly taken for granted (see Smith, 1994, 1997). One area where these ideas have been applied is in relation to data generation, where there has been a concern for research ethics and the power relationship between researcher and researched. For example, a number of articles have been published exploring issues such as production and situatedness of knowledge, representativeness, reflexivity, empowerment, emancipation, critical praxis and positionality, and how these might be best addressed (e.g. Katz, 1992; Robinson, 1994; Rose, 1997). In the collection of short position papers gathered here, the theme of ethics and moral philosophy is explicitly examined in relation to geography (as a research practice and institutional endeavour) and the lives of disabled people.

Current Issues in Sexuality and the Disability Movement

The theme of this plenary speech is an account of the lessons learned by the author's putting her efforts into sexual and reproductive rights policy in the lives of disabled people. She offers some strategies to use disability rights law to correct inequities such as: marriage penalties, child custody, sex education, and the right to privacy. These examples can provide the disability community with a framework with which to infuse sexual and reproductive rights into the larger disability rights agenda.

Disabling Environments and the Geography of Access Policies and Practices

Writings about disabled people are usually aspatial or lack geographical frames of reference. This is curious because geography is fundamental to an understanding of the social, economic, and political opportunities and/or constraints underpinning the lives of disabled people. This paper develops the contention that geographical and/or spatial terms of reference are important in understanding disabled people's lives. In developing this point, the paper seeks to describe and account for geographical variations in local authority policies and practices in addressing disabled people's access needs in the built environment. The paper adopts and develops, after Mark-Lawson & Warde (1987), the concept of 'local political environment' as a basis for understanding spatial variations in local authority policies and practices. Such ideas, in turn, are deployed with reference to postal survey and case study data, where I describe and explain aspects of the geography of access policies and practices in the United Kingdom. I conclude by noting that geographical frameworks and/or perspectives ought to be incorporated, where appropriate, into studies of disabled people and public policy processes.

The active urine collection device: a novel continence management system focusing particularly on the needs of disabled women

Purpose : This paper introduces a novel incontinence management system which applies space technology to the problem of urinary incontinence. The purpose of this paper is to invite comments and suggestions from professionals in the disability and rehabilitation field. Method : Severe urinary incontinence is a distressing condition for which there are few satisfactory management solutions. We have been able to develop a compact liquid handling system that can cope with the initial surge of urine which characteristically reaches a high flow rate of around 25 ml/sec. By using a sophisticated system of filters, the device can cope with mixed streams of urine and air which are inevitable when a non-invasive patient/device interface is used. The next phase of the project is to develop prototype devices with the aid of users to produce an effective appliance that users and carers find practical and acceptable to use. Conclusion : With the aid of users, carers and rehabilitation experts we hope to develop an excellent user-friendly product. We believe this device can make a positive contribution to the quality of life of disabled people with continence difficulties.

Differences, Conflations and Foundations: The limits to 'accurate' theoretical representation of disabled people's experience?

ABSTRACT This article proposes that current approaches to theorising disability as a form of social oppression and their relationship to disabled people's experiences are hampered by a modernist conceptual framework, which is increasingly at odds with the contemporary social world and with developments in theory-making as a whole. In order to bring disability theory closer to the lives of disabled people and the politics of new social movements, it is argued that the conceptual underpinnings of theory must be broadened beyond their current focus on structures, which view differences in terms of delimiting boundaries to one which includes an awareness of the relational, mediatory and performative role of discourse, and the increasing importance of local knowledges in shaping the social and political world.

175. Transport Needs of Disabled People Living in a Rural Environment Ruth M. Kent and Michael P. Barnes (Newcastle upon Tyne, UK

175. Transport Needs of Disabled People Living in a Rural Environment Ruth M. Kent and Michael P. Barnes (Newcastle upon Tyne, UK

182. Service Provision for Disabled People Living in a Rural Environment Ruth M. Kent, Dr. Barbara J. Chandler, Prof. Michael P. Barnes (all from Newcastle upon Tyne, UK

182. Service Provision for Disabled People Living in a Rural Environment Ruth M. Kent, Dr. Barbara J. Chandler, Prof. Michael P. Barnes (all from Newcastle upon Tyne, UK

In Whose Service? Technology, Care and Disabled People: The case for a disability politics perspective

ABSTRACT This paper discusses the introduction of telematics technologies, which are advancing rapidly in Britain and throughout the world, and which impact increasingly on the lives of disabled people. The authors argue that, to date, technology-based services have been largely, if not exclusively, determined by the interests of care service professionals, technologists and the commercial sector. Missing from the debate has been the perspective of the disability movement, which challenges professional hegemony, and introduces important issues such as choice, control and access to the wider environment. Such a perspective is needed if technological advances are to empower disabled people and not simply provide administrative solutions to the problems of increasingly hard-pressed service providers.

The impact of community-based rehabilitation as perceived by disabled people in a village in Botswana.

The purpose of the present study was to investigate the impact of community-based rehabilitation (CBR) on the lives of disabled people in Moshupa village in Botswana. Of the 132 disabled people, identified in a previous epidemiological study, all but three could be accounted for, and 77 were interviewed during a 5-week field period. The interviews took place in the homes of the clients, and focused on independence in activities of daily life, schooling/jobs and quality of life. The results indicated that a remarkably high percentage of elderly were alive (17% were 65 and over), and that most people had maintained high levels of independence in ADL. Furthermore, 20% of adults were working, 10 out of 14 children of school age were in school, and life satisfaction was high, although somewhat higher for younger people than for older ones. Significantly more younger people reported that life had improved, while most elderly people believed life to be worse now.

India considers improving lives of disabled people

The Indian parliament is to consider a bill aimed at improving the lives of the country's 35 million disabled people. The legislation would include the introduction of free education for disabled children and the setting aside of a proportion of government jobs for adults with disabilities. Efforts to improve India's policies towards disabled people have been going on since 1981 - the …

In Whose Service? A Review of the Development of Services for Disabled People in Great Britain

<h2>Summary</h2> This paper summarises the development of welfare provision for disabled people in Great Britain up to the introduction of the recent community care policies. It focuses in particular on industralisation and the effects this had on the lives of disabled people. The role of organisations <i>of</i> disabled people is also discussed.

Who Cares Wins? Women, Caring and Disability

ABSTRACT This article is an attempt to open up some of the unexplored issues in the ‘carer's debate’. The interest in carers started receiving Government funding in the early 1970s as a response to community care policies. It also received interest from carers themselves and from feminist researchers concerned with the position of women in the family and the labour market. However, in wanting to show the difficult and often unrecognised work of the carer, the debate, in both academic and popular presentation, has often emphasised the public's perception of disabled people as passive, helpless and demanding. Feminist research on carers, it is argued, has ignored women who may need care and the principle of the ‘personal is political’ has failed to identify with the lives of disabled people. It is both unhelpful and unproductive to polarise the needs of disabled people and their carers and treat them as if they are mutually exclusive. We need research which does not alienate disabled people by defining concepts like rights, independence and power in ways which exclude, making disabled people the problem rather than the focus of the research. We need to move forward in the debate, making sure that we give a voice to all those involved in the giving and receiving of personal care. The concept of citizenship with its association with universal human rights may be a way to look concurrently at these needs.

Environment and opportunity: the potential of horticulture for enriching the life of disabled people

Environment and opportunity: the potential of horticulture for enriching the life of disabled people

Investigation into Telephone Enquiries Made to the Leeds Disabled Living Center

Disabled Living Centres (DLCs), of which there are 23 in the UK, provide a valuable service of information for those involved in all aspects of life of disabled people. Most initial contact with the Leeds DLC is made by telephone. All incoming telephone calls were monitored over a 3-month period during 1986–87, with the aim of discovering who was telephoning the centre, for what purpose and from where they had heard of the centre. 145 calls were received: 33 from disabled people, 25 from their carers, 60 from medical and paramedical staff and 27 from others. The source of information covered a wide range, including hospitals (17), occupational therapists and physiotherapists (17), and social services (11). Nearly half of the reasons for calling were for information about equipment. Few (8%) disabled callers and their carers had discussed their problem with their GP. Information about such resource centres must be readily available to both disabled people and those involved in their care.

Independence: What It Means to Six Disabled People Living in the Community

ABSTRACT The hypothesis in this study asserted that independence is an infinitely variable self concept, unique to the individual which concerns control and choice rather than any absolute measure of competence. The study involved interviewing six disabled people who had lived in institutional care for at least three years and had lived in the community for a minimum of one year. The comparative data between life in an institution and living in the community was explored in relation to the concept of independence. The interviewees were able to determine, quite precisely, what independence in the community meant to them. Independence involved choice, control and power in, and over, the management of their lives and the environment in which they lived.

Book Review: Improving Residential Life for Disabled People

Book Review: Improving Residential Life for Disabled People

Disability and Self-help: A Case Study of the Spinal Injuries Association

ABSTRACT This paper provides an ‘insider’ view and suggests that organised self-help has a role to play in improving the quality of the lives of disabled people. Through a discussion of the work of the Spinal Injuries Associations, it shows the kinds of services that can be provided, controlled and run by disabled people themselves. Finally, it considers the implications of the self-help approach for the work of professionals and suggests that such an approach should be seen as complementary to medical and administrative approaches.

Independence: the ultimate goal of rehabilitation for spinal cord-injured persons.

During the late 1960s and early 1970s, a new concept related to rehabilitation and improvements in quality of life began to emerge and be expressed by people with spinal cord injuries and other disabilities. This concept, independent living, is the foundation of the independent living movement, which has helped to overcome the barriers to a higher quality of life for disabled people. Of the many organizations and programs set up to provide support for disabled people living in the community, the independent living program seems to be comparatively successful at facilitating independence by people with spinal cord injuries. Independent living programs provide the kind of community-based support services necessary to expand the range of living options for disabled people beyond those traditionally available in most communities. The role of occupational therapists in the independent living stage of the rehabilitation process can be similar in some respects to their role during earlier phases of medical rehabilitation. However, the definition of independence as a "mind process" leads to considerable expansion of the therapist's role beyond the focus on physical skills, which are usually key priorities during medical rehabilitation. Occupational therapists typically possess knowledge and skills that equip them well for assisting clients in the independent living stage of the rehabilitation process.

Media and the Disabled

Five theories of media contribution to health and political campaigns are outlined. These theories place differing emphasis on changing awareness, attitudes and behaviours. Results are reported of a project designed to assess community reactions to media during the International Year of Disabled Persons (IYDP) in 1981. Three surveys were conducted - Sydney in mid-1982; nationwide in mid-1982; and Sydney in 1983. Consistent trends emerged suggesting that the media played an agenda setting role by increasing public awareness and providing accurate information about disabled people. However, they were less successful in promoting attitude or behavioural changes in terms of increased integration of disabled and non-disabled people. Analysis of contributions made by various media components suggest television had the biggest impact with documentaries providing the most useful and most informative insights into the lives of disabled people. A set of guidelines is presented for future presentation of disabled people in the media. If the IYDP goals of acceptance, integration and greater community participation are to be achieved, these guidelines must be implemented in the media along with backup from community organisations.