'I have got my life back': users' experience of direct payments

After years of activism by disabled people's organizations, the Community Care (Direct Payments) Act 1996 made Direct Payment (DP) schemes a reality. Proponents of DP argue that it allows greater freedom and control for those people using it, but as these programmes only came into effect in 1997, few studies have tried to substantiate these claims. This paper reports on a two-year evaluation of two DP schemes in Wales. Using primarily users' feedback the paper focuses on the effects of DP and difficulties encountered, as well as why people chose—or did not choose—DP in the first place. User responses indicate a broad range of beneficial outcomes, including improved self-esteem, increased control over lives, deeper and more lasting relationships, and new interpersonal, vocational and lifestyle opportunities, as a result of the greater flexibility and freedom of choice enabled by DP. Family carers expressed similar satisfaction with DP schemes, also citing greater freedoms as a result of increased flexibility. While some potential users expressed concern over the administration of a DP scheme, users found that, with support from a user driven Independent Living Scheme, the administrative burden was manageable, and that ultimately the DP scheme was a welcome approach to support.     

Assistive technology and employment: experiences of Californians with disabilities

For people with disabilities, work remains the best route to independence and enacting one's own choices. Assistive technology (AT) is often crucial in removing barriers to employment, and in enabling workers with disabilities to work more productively. A participatory action research project known as Community Research for Assistive Technology surveyed people with disabilities using Independent Living Centers throughout California, in part to identify barriers to employment and study use of job-related AT to overcome such barriers. Across disability groups, disability itself was cited as the primary barrier to employment, with potential loss of benefits and lack of education cited as secondary barriers. A majority of working respondents reported using assistive technology (such as adapted telephones, wheelchairs, magnifiers, and adapted computer equipment) or services to perform job functions. The vast majority of those using job-related AT reported substantial benefits to their productivity and self-esteem. Employees' requests for AT as a workplace accommodation were granted more often than not, but many other employees had to pay for their own workplace AT.     

Agency in the twenty-first century: the emperor’s new clothes

Ideas about people with disabilities have evolved dramatically since the 1950s – from individuals ‘suffering from illness’ and dependent on others, to today’s credo stressing participation and social inclusion. People with a disability are considered to have capacities and bear responsibility to achieve active citizenship, which is positive in that a person’s capacities are addressed rather than their limitations. The focus on capacities stems from the Independent Living Movement that originated in the 1960s in the USA, advocating self-determination, self-respect and equal opportunities for people with disabilities. They demanded equal access to both the public domain and they requested assistance to enable their participation. As such, their early effort was to strive for agency. This article will explore changing and competing constructions of agency, participation and citizenship.     

Can a Unified Service Delivery Philosophy Be Identified in Aging and Disability Organizations? Exploring Competing Service Delivery Models Through the Voices of the Workforce in These Organizations

Services for older adults and younger people with disabilities are increasingly merging, as reflected in the creation of Aging and Disability Resource Centers (ADRCs). Using ADRCs to coordinate services is challenging, primarily because these fields have different service delivery philosophies. Independent Living Centers, which serve people with disabilities, have a philosophy that emphasizes consumer control and peer mentoring. However, the aging service delivery philosophy is based in a case management or medical model in which the role of consumers directing their services is less pronounced. Using institutional logics theory and a qualitative research design, this study explored whether a unified service delivery philosophy for ADRCs was emerging. Based on focus groups and questionnaires with staff from ADRCs, findings revealed that competing service delivery models continue to operate in the aging and disability fields.     

Personal Assistance for Students with Disabilities in HE: the experience of the University of East London

Access to higher education for students with disabilities has been improved through recent initiatives taken by the University Funding Councils but inclusion for students who require personal support remains problematic. This paper explores the experience of students using personal assistants at the University of East London. The issues explored were selected from questionnaire and interview feedback provided by students using the University service since 1993, and were used as the basis of in-depth interviews with six students who use personal assistants, by the University Co-ordinator of Services for Students with Disabilities. The personal assistants were asked to respond to the same questions but in a written, questionnaire format. Issues explored include: funding; the employer-employee role and employment matters; power and authority relationships; personal, family and professional relationships with assistants, other students, tutors, and staff, and access to non-academic activities and the management of assistants.     

Consumer‐directed personal assistance and ‘care’: perspectives of workers and ventilator users

‘Consumer‐directed personal assistance’ has been a central tenet of the North American Independent Living Movement since its inception. There is, however, surprisingly little research that explores how consumer‐directed assistance gets played out in practice. We conducted a qualitative study that explored the relationships between disabled ventilator users and their personal support workers (PSWs) in supportive housing environments in Ontario, Canada. The results show that while all participants agreed that they adhered to the philosophies of ‘independent living’ embedded in ‘consumer‐directed personal assistance’, how this was understood and enacted varied considerably. Narrow interpretations focused on the task‐oriented aspects of PSWs’ work, while broader interpretations included interpersonal aspects of care, respect and mutuality. We discuss how a conceptualization of consumer‐directed personal assistance can be elaborated to accommodate a notion of ‘care’ while retaining the core tenets of the independent living philosophy.     

Personalisation,individualism and the politics of disablement

This paper assesses the social policy narrative personalisation, and particularly the implications of the narrative for disability politics. The advantages and disadvantages of positioning specific funding mechanisms within the narrative are explored. It is argued that personalisation is insufficiently aligned with collective aspects of empowerment. More particularly, it disproportionately emphasises improvements in individual autonomy through personalised support, and lacks reference to structural oppression or the need for collective forms of action that bring about structural change. It is further argued that personalisation lack a multi-faceted analysis of disability and disempowerment, and as a result also lacks any vision of a positive alternative society. In assessing personalisation, the positive and negative dimensions of disabled people’s freedom are considered. As a response to the apparent shortcomings of personalisation, the integrated living approach and Centres for Independent Living are considered important elements in an alternative narrative to personalisation.     

Job satisfaction among nurse assistants employed in nursing homes: An analysis of selected job characteristics

The quality of life of residents of nursing homes depends heavily upon the work of nurse assistants (also known as nurse aides). However, beyond basic demographic data, little is currently known about this highly important category of care providers. This study explores the relationships between selected job characteristics and job satisfaction of 138 nurse assistants employed in nursing homes in Ohio. Factor analyses reveal four dimensions among these job characteristics. These dimension are labeled supervision, personal recognition, family/ work conflict, and qualifications. Only qualifications fail to show a significant correlation with the nurse assistants' levels of job satisfaction. The strongest relationship is with supervision. The implications of the findings for job satisfaction and job performance among nurse assistants are discussed.     

Community reintegration for people with psychiatric disabilities: challenging systemic barriers to service provision and public policy through participatory action research

People with psychiatric disabilities represent a growing group within the population of nursing home residents in the USA. Despite a preference for living in community‐based settings, the availability of supportive services for community living is hindered by barriers at both the service provision and public policy levels. Therefore, understanding and responding to the community living and participation needs of people with psychiatric disabilities is a highly relevant area for action research. This paper discusses a participatory action research endeavor carried out in collaboration with key personnel at Centers for Independent Living who work to provide community reintegration services for individuals with psychiatric disabilities. The events of this 15 month partnership are extensively described, analyzed and discussed. Findings reflect the critical need for communication, dialogue and action to support people with psychiatric disabilities in the community.     

EDITORIAL

Abstract

This exploratory, qualitative research was conducted to obtain the perspectives of people with significant physical disabilities regarding factors that have facilitated and hindered the development of a positive self-concept, participation in the broader society, and the formation of interpersonal relationships. The sample was high achieving in terms of education and/or career and attributed positive self-perceptions and their success in the broader society and interpersonal relationships to the attitudes and perceptions regarding their abilities, talents, and potential modeled in supportive family relationships. Females reported the influence of significant others most often, and males the effectiveness of their personality characteristics. Societal barriers, both practical and attitudinal, were reported along with the process for developing a positive self-perception despite these.     

Holding the line online: exploring wired relationships for people with disabilities

Clearly, the Internet represents a huge new step in interpersonal communications. It offers people with disabilities the possibility of confronting the issues of time, space, communication and the body, but what happens when people with disabilities engage with the computer? Do they use the Internet to develop friendships and intimate relationships? Does online communication enhance self‐identity and social being? Do people use the Internet to transcend the vagaries of their frail and vulnerable bodies? Or are they simply ‘holding the line’ online, using the Internet as they would use a letter or a telephone? Is the Internet a chimera, a failed promise, for people with disabilities?     

Franklin D. Roosevelt's Shangri-La: foreshadowing the Independent Living Movement in Warm Springs, Georgia, 1926-1945

American President Franklin Delano Roosevelt is well known to have disguised and minimized his disability in his role as a political leader. Less well known is the remarkable nature of the colony he established for people with disabilities from polio in Warm Springs, Georgia in the 1920s, 1930s and 1940s. The colony at Warm Springs represents a unique historical community in which disability was not stigmatized; where people with disabilities controlled their own resources and their own lives; and where the medical model of disability was repudiated. As such, the Warm Springs community represents a remarkable period and place in disability history that warrants continued study. New evidence drawn from the archives of the Roosevelt Warm Springs Institute for Rehabilitation, the FDR Presidential Library in Hyde Park, New York and the personal scrapbooks of former residents of the Warm Springs colony provides further support for the theory that FDR's Warm Springs colony represented an early precursor to the philosophies and values promoted by the Independent Living Movement that emerged 50 years later. The Warm Springs colony offered an unprecedented approach to rehabilitation and independent living for people with disabilities from polio in the 1920s, 1930s and 1940s, and because of this provides an invaluable lesson from history that deserves ongoing attention.     

Disentangling over-representation of parents with disabilities in the child welfare system: Exploring child maltreatment risk factors of parents with disabilities

The study explores the risk factors for child maltreatment and self-reported child maltreatment among a population-based sample of parents with disabilities. Drawing on a nationally-representative, population-based data file that oversampled people of color, income-adjusted odds ratio tests were conducted to establish population differences among parents with and without limitations in activities of daily living (ADLs). Results suggest that parents with disabilities were more likely to report many of the risk factors associated with child maltreatment than parents without disabilities, including witnessing interpersonal violence as a child; experiencing violence, neglect or a foster care stay as a child; mood or substance use disorders; and engaging in or receiving interpersonal violence as an adult. Before controlling for income, parents with disabilities had only a negligibly higher rate of engaging in violence against their children. After controlling for income, parents with disabilities were 2.5 times more likely to engage in violence against their children. Parents with disabilities who did engage in violence against their children had greater amounts of some of the child maltreatment risk factors in comparison to parents with disabilities who did not engage in violence, particularly their own childhood experiences of maltreatment, witnessing of interpersonal violence as a child, childhood stays in foster care, and experiences with interpersonal violence as an adult. Findings add to the understanding of the risk factors for child maltreatment that are related to the collateral effects of having a disability, and through the use of income-adjusted data, help disentangle why parents with disabilities are over-represented in the child welfare system. The findings highlight the need for the child welfare system to increase its disability competence in working with both children and parents with disabilities.     

Patterns of Nonverbal Behavior and Sensivity in the Context of Attachment Relations

Nonverbal behavior and sensitivity to a relationship partner’s nonverbal behavior importantly influence the quality of interpersonal interactions and relationships, including attachment relationships. The abilities to encode, or express, and to decode, or understand, nonverbal cues are crucial to effective communication of emotions and are associated with social adjustment and relationship satisfaction. One important social context for the development and use of nonverbal encodingand decoding abilities is what Bowlby (1969/1982, Attachment and loss: Vol.1.Attachment (2nd ed.). New York: Basic Books) called attachment relationships—interpersonal relationships in which one person’s emotional security depends on another person’s sensitive, responsive caregiving and support. In this paper, we present theoretical ideas, review relevant research, and propose new avenues of research dealing with associations between attachment-related processes and patterns of nonverbal behavior and sensitivity in adulthood, two domains of research that have not previously been adequately connected.     

The Influence of Attachment Styles on Sexual Communication Behavior

Attachment theory is one of the major theoretical frameworks for understanding romantic relationships. Attachment styles are formed through interactions with caregivers and shape an individual’s expectations of subsequent interpersonal relationships. In this study, we examined how attachment styles influence participants’ ability to communicate with their partners about problems in their sexual relationship. A community sample of 81 couples engaged in two video-recorded discussions, one representing an aspect of the couple’s sexual relationship where the male partner wanted change and the second representing an aspect of the sexual relationship where the female partner wanted change. Conversations were then coded, with each person being rated on three positive communication dimensions (positive affect, offering solutions, and responsiveness) and three negative communication dimensions (hostility, negative affect, and unskilled communication behaviors). As predicted, attachment avoidance was related to more negative and less positive communication for both the individual and his or her partner. Our observational data did not reveal any significant effects of attachment anxiety on sexual communication. These results can be contrasted with findings from self-report studies that do suggest an anxious attachment adversely impacts sexual communication.     

Personal assistance from family members as an unwanted situation,an optimal solution or an additional good? The Swedish example

The aim of this article was to explore how users experienced and managed personal assistance from family members who are employed as personal assistants. Seventeen users of personal assistance provided by one or several family members, often in combination with external personal assistants, participated. Thematic qualitative interviews were conducted. The participants were between 19 and 58 years old, and were living with various impairments: mobility, sensory and/or learning disabilities. The results showed that personal assistance from family members could both promote and be a barrier to disabled people’s control over their own lives and participation in society. It became evident that the situation could have both advantages and disadvantages for both parties, which puts the focus on the interdependency between the participants and their family assistants. However, the results also points to a potential risk that the welfare state (re)passes its responsibilities back on to disabled people and their families.     

Individual Participation in Collective Action in the Context of a Caribbean Island State: Testing the Effects of Multiple Dimensions of Social Capital

This article presents the findings of a case study examining the relationship between social capital and individual participation in collective action on a Caribbean island recovering from devastation inflicted by Hurricanes Ivan and Emily. Using data drawn from 114 residential surveys on the island of Carriacou, Grenada, over the summer of 2006, we empirically test social capital as a predictor of individual participation in both formal and informal civic events. In addition, we further the theoretical development of the concept of social capital by independently testing the relationships between its multiple dimensions, specifically social networks; interpersonal trust; and norms of reciprocity. We find that associational membership and age are the two strongest predictors, while interpersonal trust, gender, and marital status are also significant. Our path analysis reveals that there is not a significant direct effect between associational membership and interpersonal trust, suggesting that the two dimensions may have independent, yet complementary, influences. This study sheds light on factors influencing citizen participation in “civic” forms of collective action in a developing region of the world, while demonstrating the multidimensional nature of social capital.     

Oppositional Consciousness: Its Manifestation and Development. The Case of People with Disabilities*

While resource mobilization theory has advanced our understanding of social movements, two questions require further explanation: (1) How do people come to define their situation as unjust and subject to change through collective action? (2) How is such an “oppositional consciousness” empirically studied? From field research among people with disabilities, I suggest that oppositional consciousness is manifested through the collective actions, symbols, and cultural artifacts constructed by a group. I propose that strong interpersonal ties among group members may not be necessary for an oppositional consciousness to develop. To understand how a dominated group develops an oppositional consciousness, rather than analyzing the strength of its members' social ties, we must examine the context and the nature of these ties: (1) the institutions in which their social interactions typically occur; (2) the socialization process they experience within these institutions; and (3) members' contact with the oppositional ideologies of other dominated groups.     

Loving and living the Zapatista event: understanding affect inside youth Mexican activism

This paper will detail youth political engagement in one of the most important activist organisations that the Mexican city of Puebla (the fourth largest in the country) has known in its recent history. In particular, the paper will focus on the leadership of two of the leaders of this organisation, who were also lovers. As we will see, the relationship between these two activists proved to be very important for this organisation, so much so that when the couple broke up, the entire collective collapsed. In this sense, the theoretical challenge I am interested in is the one of inserting the study of the affective dimension of youth political practices in the social and political contexts in which these practices make sense. It is hoped that by studying this case in a rather explorative way, we will gain a better understanding of how youth politics and engagement interact with interpersonal affect.