Doing Disability Research: activist lives and the academy

The relationship between the academy and the disability movement is a problematic one. Disability researchers based in the academic world who align themselves with the social model of disability face contradictory aims and values in attempting to challenge dominant modes of research production in ways that signify the importance of the agendas of disabled people. It could be argued that research that involves people with the label of 'learning difficulties' [1] creates further points of contention. In this paper we do two things. First, we re-present a paper given at a conference on the performing arts of people with 'learning difficulties', where the audience was made up of performers, workers, providers and researchers. This paper attempted to be accessible, theoretical, political and practical. Secondly, we reflect upon this paper in relation to seven points of analysis that emerge at the boundaries of disability politics and disability research. We argue throughout that real efforts must be made to bridge these boundaries in ways that augment disability theory and politics together.     

Which Label? An Investigation into the Effects of Terminology on Public Perceptions of and Attitudes towards People with Learning Difficulties

There is much rhetoric around the damaging effect of certain labels applied to people with learning difficulties. This empirical study investigated the effect of three different labels in current usage on public perceptions of the groups so labelled. The labels contrasted were 'mentally subnormal', 'mentally handicapped' and 'people with learning difficulties'. Three independent groups of subjects were presented with an attitude questionnaire. This included a semantic differential scale to ascertain a stereotype of the labelled group, a social distance scale, and a series of questions to tap attitudes regarding people's abilities and rights. Each group was questioned with reference to one of the three labels only. A total of 111 subjects took part. The main findings supported the view that the term 'learning difficulties' is associated with more positive attitudes than either of the other labels which do not significantly differ from each other. However there was also evidence that people labelled as having 'learning difficulties' were thought to be less deserving of special provision. The implications of these findings are discussed in relation to present and future uses of labels.     

Research project on advocacy and autism

This article presents the findings of a qualitative research project about the difficulties in accessing advocacy faced by adults labelled as having autism and Asperger's Syndrome in the Northwest of England. It is also an example of partnership working between three organisations. The article examines both the process of team-led (emancipatory) research and the project findings. Seven main themes emerged throughout the research: late diagnosis and lack of service support; bad experiences with systems of care; feelings of 'not belonging' (identity issues); barriers around communication and sensitivity towards individuals; lack of awareness and access to advocacy and rights; difficulties of 'fitting into' what is already available; and interest in developing knowledge around advocacy. Examination of the main themes pointed to a disturbing link between poor service response, episodes of crisis and mental ill health. The Carlisle People First Research Team is made up of 6 researchers who are labelled as having 'learning difficulties' who work in partnership with one other researcher.     

Sheltered and Supported Employment in the 1990s: the experiences of disabled workers in the UK

Sheltered and supported employment are important areas of social policy provision for disabled people in the UK, but they have received little attention in the sociological literature on disability. This omission is addressed by developing a framework for understanding the state's employment policy for disabled people. It is argued that recent changes in sheltered and supported employment provision must be understood in the context of broader labour market restructuring. This argument is illustrated by an exploratory survey of workers in both programmes. The findings suggest that sheltered and supported employment tend to prioritise the needs of employers over those of disabled workers. In concluding, it is argued that an adequate approach to the employment needs of disabled people needs to go beyond micro-policy debates on the relative merits of existing employment programmes and, instead, engage at a broader level of societal change.     

Assessment of vocational opportunities and continuing job placement for persons with mental disabilities: factors indicating levels of necessary support

We determined primary factors in allocating support for vocational opportunities and continuing job placement for clients with mental disabilities. The study analyzed 29 items regarding work attitudes and vocational skills for 70 clients as assessed by the Tokyo Metropolitan Rehabilitation Center for the Physically and Mentally Disabled. The evaluations were performed using the situational assessment approach with a 3-point support scale system assigned through observation of behavior. The results of these evaluations placed 35 clients in employment groups (A and B) and 35 clients in a sheltered workshop group (C). The data was analyzed by multivariate analysis. Predictions of success and functional differences among the groups were indicated by the data. Differences were found among the three groups in work attitudes and skills such as "self-direction" and "directions for social participation". Out of the 35 clients currently employed, 11 were recognized as needing ongoing assistance from supported employment offices. For the supported employment group (B), the major work attitudes and skills for which they required continuous services for maintaining stable jobs were 'emotional stability' and 'learning of working skills and accomplishment of work.' In a previous study, the major differences between the competitive employment group (A) and the sheltered workshop group (C) were in areas of 'responsibilities,' 'goals for life,' 'motivation for the work and understanding of contents for work,' and 'safety during work.' Our study supports these findings. In addition, transition from the sheltered workshop to supported employment required training to improve skills and support for 'responsibilities,' 'goals for life,' 'participation in leisure activities and community-based activities,' and 'preparation and cleaning for work.'     

The current situation of supported employment in spain: analysis and perspectives based on the perception of professionals

At present, supported employment is emerging in Spain. It must be recognised that these programmes are more effective than the traditional sheltered structures, in accounting for the number of placements achieved in the mainstream employment market. Despite this fact, recent developments arising from social welfare policies do not encourage the consolidation of supported employment. This article briefly traces the evolution of employment integration of disabled people in Spain, and gives the results of research on professional workers in supported employment programmes. This data enables us to consider proposals to extend the experience of supported employment, thereby improving the employment situation of people with disabilities in our society.     

‘If this wasn’t here I probably wouldn’t be’: disabled workers’ views of employment support

UK governments since 1997 have introduced significant changes to move disabled people off benefits and into employment. Commentators have criticised the adoption of the ‘medical model’ of disability implicit in many of these policies, with its focus on individual rather than institutional change. This paper reports empirical data about participants’ experiences of one national supported employment programme. Participants of WORKSTEP were overwhelmingly positive about their experiences both of work and the support to find work. The rare reports of negative experiences reflect the focus on intervening at the level of individual workers, rather than the workplace or organisation of work. Analysis of their views is valuable in the light of ongoing welfare reform as well as recessionary pressures on labour markets and employment services, which, in emphasising individual solutions to employment problems, may overlook the need for more broad-based, social interventions.     

Beginnings and endings; Is there a way out of psychiatric services?

An historical and conceptual overview of psychiatric rehabilitation services is presented as a challenge to the appropriateness of traditional community based psychiatric services which isolate people from the community. The position is taken that the goal of psychiatric rehabilitation services should be to link people to normal community services and support systems. The problems which can arise from treating people in a separate psychiatric system are illustrated by tracing the development of a supported employment program through periods of high employment and high unemployment.     

Supported Employment as a Paradigm Shift and a Cause of Legitimation Crisis

Supported employment in its original form represents a new service paradigm, where services are organised as individualised supports aimed at securing the presence of disabled people in their local communities. Using Finland as an example, this article analyses difficulties that arise when a new service paradigm is introduced that is incompatible with the old forms of service. In this case, the accession of Finland to the European Union brought with it an active employment policy of a marginalised workforce. Along with this development, funding for supported employment projects threatened to produce a legitimation crisis in old service organisations. The crisis was managed in two ways. First, the concept of supported employment was redefined to more accurately fit into old forms of service. Secondly the project activity was ceremonialised and its goals were made ambiguous.     

Older disabled workers' perceptions of volunteering

The activity of volunteering is readily available to, and undertaken by, able-bodied people in Australia and is recognized as a valuable social pursuit, particularly among citizens of retirement age. Despite the known benefits of volunteering, however, there are few reports of disabled people participating as volunteers and little is understood of their experiences or perceptions of volunteering. The aim of this study was to explore how older workers within supported employment settings perceived the opportunities for and barriers to volunteering. Fourteen people with long-standing impairments participated in this small qualitative study. Overall the participants were positive about volunteering, but noted they might require support to volunteer successfully. Drawing upon the participants' views, recommendations are made for developing training. Disabled workers facing retirement need to be supported to have opportunities for active participation in the community as volunteers if so desired.     

Partnering with the 21st century workplace: leveraging workplace ecology

The 'accessible' job market of the 1990's has given way to a challenging job market in a climate of economic uncertainty in the early Twenty-First Century. For vocational rehabilitation professionals this change requires the strategic use of workplace supports to increase the value and sustainability of work performed by people with disabilities in competitive jobs. An analytical framework for leveraging the natural supports of the workplace is provided by the workplace ecology as a bounded environment in which relationships between workers and supervisors promote learning and enhanced performance. The dynamics of the workplace ecology are explored with particular reference to workers with disabilities receiving supported employment services. Recommendations are made for leveraging the workplace ecology to the benefit of the supported worker. Implications for supported employment services in the new millennium are discussed.     

Transition from school for youths with a disability: issues and challenges

Australian research has demonstrated that students with a disability are more likely to remain out of the full‐time workforce. These research findings have been the catalyst for a call for a comprehensive career development and transition planning approach for all students with disabilities in schools as well as for employers to rethink the role of people with disabilities in the workforce. In the Australian context the transition from school for individuals with a disability is complicated by a disparate and fragmented group of service agencies providing a range of services, including employment, supported accommodation, recreation and leisure pursuits, as well as training and placement, along with, at times, a deep‐seated prejudice towards people with disabilities in the market place. This paper reviews a number of issues and challenges confronting individuals with a disability making the transition from school to the post‐school environment.     

Mental illness, supported education, employment and recovery: Ben's story

Supported education programs aim to facilitate the successful return to higher education for people living with mental illness who may have experienced educational interruptions due to their illness. This article shares the story of Ben who lives with mental illness and his experience of participating in an Australian supported education course. The two authors draw on a qualitative life history approach as they reflected on Ben's experiences of mental illness, educational disruption and returning to education and employment. The losses associated with educational disruption and the positive and empowering experience of becoming a student again are described as positively impacting recovery. Ben's story is shared in anticipation that other people living with mental illness, their family and carers, or workers supporting those people, may draw from his determination and success, in their own journeys of recovery.     

Adults with cystic fibrosis and barriers to employment

Existing research on cystic fibrosis (CF) tends to view CF as a long‐term medical condition of childhood, thus reinforcing the mistaken view that few children with CF survive into adulthood. Despite the fact that people with CF are increasingly living into older age there has been little research into the employment of adults with CF. Those studies which have been undertaken portray CF as a ‘serious illness’ which causes employment problems. In contrast, this paper discusses findings from a study which explored the employment experiences of adults with CF from a social model perspective. The findings reveal barriers to employment which are similar to those experienced by other disabled people, as well as barriers related to the ‘impairment effects’ of CF. The authors conclude that adults with CF have valuable perspectives to contribute to social model analysis and the development of employment‐related policy solutions.     

Autism,employment, and the role of occupational therapy

The purpose of this article is to review the existing literature to generate guidelines for the role of occupational therapy in employment for persons with autism. Previous research about strengths and barriers to employment, and types of employment commonly offered to persons with autism are reviewed. The supported employment model is identified as the most productive approach for use with this population. The four approaches to the supported employment model and the best practice contributions of several innovative supported employment programs are discussed. The interdisciplinary team approach is best to assist persons with autism to gain employment and ensure success on the job. The role of the occupational therapist as a beneficial team member in assessment, job development, job placement and training, and supported employment is outlined.     

Young people's time use and maternal employment in the UK1

This paper analyses the relationship between young people's time use and maternal employment in the United Kingdom (UK). Two dimensions of young people's time use are important for understanding the impact of maternal employment. The first of these is family context. This concerns the time young people are near their parents or not. The second relates to young people's activity patterns. Combining information from both dimensions is necessary to provide a comprehensive overview of the impact of maternal employment on young people's time use. The paper demonstrates that young people's time use is associated with maternal employment both in terms of activity patterns and family context. Young people with employed mothers spend more time alone with a father, and more time with neither parent. More specifically, young people with mothers employed fulltime (FT) spend significantly more time watching TV than those whose mothers are not employed, especially when they are not near any parents. There is a negative association between FT maternal employment and the time young people spend in achievement‐related activities, concentrated in time when alone with a mother. Unlike time in leisure activities or time watching TV, time in achievement‐related activities when in the presence of a father does not increase to compensate for the loss in time spent in achievement‐related activities when alone with a mother.     

Social enterprises as enabling workplaces for people with psychiatric disabilities

In recent years, western governments influenced by neoliberalism have emphasized paid work as a key route to social inclusion and community participation for people with psychiatric disabilities. Although paid work can offer many rewards, access to mainstream employment for people with psychiatric disabilities is difficult as they continue to encounter discrimination and a lack of workplace accommodation. One response to these challenges has been the creation of social enterprises as ‘alternative spaces’ of employment for people with psychiatric disabilities. On the basis of interviews with key informants from 21 different social enterprises across Ontario, Canada, this paper critically analyzes the strategies used by organizations to create jobs that are both accommodating for people, but also conducive to the ongoing success of the business.     

Social inclusion through employment: the marketisation of employment support for people with learning disabilities in the United Kingdom

Employment for people with learning difficulties is considered key to their social inclusion. This contradicts the perceived un-employability of people with learning difficulties that has been part of their social identities throughout their history hitherto. The national rate of employment for people with learning difficulties remains extremely low and has barely changed in the 20?years between 1990 and 2010. This paper investigates links between learning disabilities and employment, drawing on interview-based research. It analyses the quality of experience of the minority in employment to consider whether employment can serve the inclusive purpose expected of it.     

Employment after spinal cord injury: the impact of government policies in Canada

The British Columbia Paraplegic Association (BCPA) sought a research partnership to evaluate where its activities should be focused. A survey of members with disabilities of the BCPA included questions on employment and identified three priorities related to employment. These were the need for assistance in finding appropriate work, the impact of policies of government and insurance agencies, and attitudes of employers. This paper examines the social and political environment related to employment following spinal cord injury in British Columbia, Canada. There is no coherent set of goals underlying government employment and income programs in Canada. Incremental development of particular employment and income programs during the 20th century led to a patchwork of policies and programs, which deal with people differently according to the cause of their disability. Federal and provincial governments have attempted to educate employers and reduce barriers to employment of those with disabilities by focusing on anti-discrimination legislation and individual rights (e.g. the Employment Equity Act and the Canadian Human Rights Act). However, people with disabilities face non-accommodating environments, inadequate income support, lack of opportunities and little political influence which stem from an unfair distribution of societal resources, not from discrimination. Joint efforts of the BCPA and other disability organizations are likely to have the most impact on legislative changes.