Critiquing representations of intellectual disability in occupation-based literature.

BACKGROUND: Within and beyond occupation-based scholarship, concerns abound regarding the pervasiveness of discourses that promote a negative, deficit-based view of intellectual disability and associated consequences for disabled people's lives. Such representations risk reducing the complexities of human doing and being and can limit the occupational possibilities of this group. Yet, there is a lack of critically reflexive research exploring how disability is discursively constructed in occupation-based literature. AIMS/OBJECTIVES: This paper critically analyses representations of intellectual disability within occupation-based literature. It considers the influence of such representations on the occupational possibilities of people labelled intellectually disabled. METHODS: This review employed a critical interpretive synthesis of 21 peer-reviewed articles from occupational therapy and occupational science that focused on intellectual disability. RESULTS: Three analytic threads were identified as contributing to how intellectual disability was represented across the reviewed literature: habilitating expected doings, becoming productive citizens, and activated, but insufficient. CONCLUSION & SIGNIFICANCE: Occupation-based discourses have powerful influence within society, particularly within occupational therapy, regarding understandings of intellectual disability and how these shape occupational possibilities for persons labelled intellectually disabled. Drawing attention to taken-for-granted representations of intellectual disability is essential to promote transformative occupational therapy practice and enhance occupational possibilities for this population.

Ageing with (and into) assistive technology: an exploration of the narratives of amputees and polio survivors.

PURPOSE: Assistive technologies (AT) perform an important social role, interacting with cultural systems to produce or hinder accessibility to biosocial environments. This interaction profoundly shapes not only how an individual body can be experienced by users but also produce and hinder accessibility to biosocial environments. AT users have historically been viewed through a medical model, which deems them disabled by their impairments and by dominant ableist narratives. Therefore, this paper serves to provide an insight into the importance of ageing with and into AT. This paper aims to investigate polio survivors' and diabetic amputees' experiences of assistive technologies in order to better understand impacts upon narrative and identity. By applying an anthropological and sociological lens, a holistic view of the experiences of polio survivor and amputee AT users is developed. METHOD: This paper draws on 16 in-depth interviews with polio survivors and diabetic amputees in the United States (US) and Australia, which were analysed using an experience-centered narrative approach. Both projects were approved by ethics boards. All participants provided written consent. RESULTS: Five themes were identified: a) disruption to biographies, which reflected AT impact on how narratives become altered; b) impacts to autonomy, which reflected the importance of regaining previous daily activities; c) re-engaging with community life, which highlighted how AT supported participation in valued activities; d) self-perceptions of assistive technologies, which act in opposition to external perspectives and challenge ableist narratives; and e) an intergenerational comparison of new and older AT users highlights the importance of temporalities. CONCLUSION: This paper offers new perspectives on ageing with assistive technologies, with a focus on identity and narrative. The importance of this paper is to contribute to the existing literature that demonstrates the cultural implications that arise through embodiment and assistive technologies.IMPLICATIONS FOR REHABILITATIONThe use of assistive technology can help individuals regain function, but the individual circumstances require considerationThe use of assistive technology is a complex entanglement of bodies, environments, biographies, and imagined futures.The use of assistive technology can provide participants autonomy over their narratives and assist with maintaining their identities.

Float to grow: nurturing the roots of socially inclusive and just practice in occupational therapy students / Flutuar para crescer: nutrir as raízes da prática socialmente inclusiva e justa com estudantes de terapia ocupacional

Abstract Models of practice and theoretical frameworks that seek to deemphasize impairment and focus on the implications of societal attitudes, norms, and culture are significant and relevant to the practice of occupational therapy. As an underpinning of client-centered practice, there is a need to highlight and embrace the intersection of impairment-deemphasizing theories and move from conceptual understanding to true application of those theoretical models in practice. This article describes the inclusion of the Salamander Workshop; an experiential learning activity designed to facilitate the development of students' therapeutic self-awareness and initiate a starting point for incorporating social frameworks into authentic practice. Student reflections conceptualize the discussion about professional growth and development against the backdrop of disability experiences, social change, and empowerment. The article begins with an introduction to how the profession of occupational therapy and disability studies interconnect. This is followed by a description of both the occupational therapy education program where the experiential learning activity took place, and details of the workshop itself. The final two sections of the article articulate and discuss student reflections of the experiential learning exercise and conclude by framing the discussion within the larger context of occupational therapy pedagogy. The Salamander Workshop facilitated an opportunity for students to immerse themselves in the lived experience of others, while enhancing their own self-awareness, which in turn may translate to their growth and development as inclusive practitioners.

Resumo Modelos de prática e referenciais teóricos que buscam diminuir a ênfase e focar nas implicações de atitudes sociais, normas e cultura são significativos e relevantes para a prática da terapia ocupacional. Para aprofundamento na prática centrada no cliente, há uma necessidade de destacar e abordar a interseção de teorias que reduzem a ênfase na deficiência e passar da compreensão conceitual para a verdadeira aplicação desses modelos teóricos na prática. Este artigo descreve a inclusão da Workshop de Salamandra; uma atividade de aprendizagem experiencial projetada para facilitar o desenvolvimento da autoconsciência terapêutica dos estudantes e iniciar um ponto de partida para incorporar estruturas sociais no interior de práticas autênticas. As reflexões dos estudantes conceituam a discussão sobre crescimento e desenvolvimento profissional no contexto de experiências de deficiência, mudança social e empoderamento. O artigo inicia com uma introdução sobre como a profissão de terapia ocupacional e os estudos sobre deficiência se interligam. Isto é seguido por uma descrição do programa de educação em terapia ocupacional no qual a atividade de aprendizagem experiencial ocorreu e detalhes do próprio workshop. As duas seções finais do artigo articulam e discutem as reflexões dos estudantes sobre o exercício de aprendizagem experiencial e concluem analisando a discussão dentro do contexto mais amplo da pedagogia da terapia ocupacional. O Workshop Salamandra facilitou uma oportunidade para os estudantes mergulharem na experiência vivida pelos outros, ao mesmo tempo em que aprimoraram sua própria autoconsciência, o que, por sua vez, pode se traduzir em seu crescimento e desenvolvimento como profissionais inclusivos.

Who occupies disability? / Quem ocupa a deficiência?

[{"text": "Locating occupational therapy within gendered and racialized systems of power, the authors consider\r\nthe intersectional nature of critical disability studies discourse and the need for occupational therapy to incorporate such values into practice. This article discusses ways in which occupational therapy as a profession and individual therapists can align with or resist the economic determination which has come to dominate medical systems. It considers some of the political background to the history of the profession and its relationship with power. This positioning of the profession is explored against the impact of neoliberal economic policy on health, rights, service delivery and disability, and against some key issues, the pressure of ageing populations and the positon of occupational therapists as women professionals. Current policies present a critical challenge to central occupational therapy tenets. Occupational therapists may find themselves working both in alliance with disabled people and disability activists, and against them.", "_i": "en"}, {"text": "Localizando a terapia ocupacional dentro de seu gênero e radicalizando os sistemas de poder, os autores consideram a natureza interseccional do discurso de estudos de deficiência crítica e a necessidade da terapia ocupacional incorporar tais valores no interior de sua prática. Este artigo discute maneiras pelas quais a terapia ocupacional como uma profissão e os terapeutas ocupacionais individualmente podem alinhar-se ou resistir à determinação econômica que passou a dominar os sistemas de saúde. Considera-se alguns dos antecedentes políticos da história da profissão e sua relação com o poder. Este posicionamento da profissão é explorado contra o impacto da política econômica neoliberal sobre a saúde, os direitos, a prestação de serviços e a deficiência, e contra algumas questões-chave, como a pressão pelo envelhecimento da população e a posição de terapeutas ocupacionais como profissão de mulheres. As políticas atuais apresentam um desafio crítico aos princípios centrais da terapia ocupacional. Terapeutas ocupacionais podem encontrar-se trabalhando tanto em aliança com as pessoas com deficiência e militantes deste campo como contra eles.", "_i": "pt"}]

Project Shake-It-Up: using health promotion, capacity building and a disability studies framework to increase self efficacy.

PURPOSE: Project Shake-It-Up provided a health promotion and capacity building program for individuals with spinal cord injury, multiple sclerosis, and related neurological impairments. Major research aims were to evaluate changes in participants' self-efficacy, ability to set/achieve goals, and perceived independent-living status. METHODS: Participants completed self-efficacy measures at baseline, program completion, 6- and 12-month follow-up, and set health and/or independent living goals. Progress toward goal attainment was monitored periodically and assessed qualitatively. RESULTS: There was a statistically significant difference in the change in self-efficacy scores for intervention participants compared to non-participants. Participants gained independent-living skills and confidence in their abilities to set and achieve a variety of goals, in the areas of education, employment, housing, transportation, accessing community resources and activities, participation in sports and leisure, and health promotion. CONCLUSIONS: Researchers evaluated results using a disability studies framework of empowerment which recognizes the role of environment, gender, race/ethnicity, and social status in the experience of disability. Participants reported increased independence, community access, and participation. They took action in multiple arenas with changes observed and reported in areas of intrapersonal, interpersonal, and behavioral functioning that indicated greater personal empowerment.

Fatigue and quality of life in pediatric multiple sclerosis.

Fatigue and quality of life are significant concerns in adult multiple sclerosis (MS) but little is known about these factors in pediatric MS. The present investigation evaluates fatigue and quality of life in 51 pediatric MS patients to determine the rate of fatigue and reduced quality of life and assesses the relations between these variables and clinical factors. Fatigue and quality of life were assessed by self- and parent-report via the PedsQL Multidimensional Fatigue Scale and the PedsQL Quality of Life Scale. One-sample t-tests determined if scores were below published data for healthy individuals. Moreover, scores falling one standard deviation from norms were considered mildly affected, with severe difficulties being defined as scores falling two or more standard deviations from norms. Associations between self- and parent-reported difficulties and clinical factors were examined via Pearson correlation analyses. In comparison with healthy samples, pediatric MS patients reported greater difficulties with respect to fatigue, sleep, cognition, physical limitations, and academics. In addition to significant difficulties on these factors, parents reported problems with respect to emotional functioning, and tended to report greater fatigue, sleep, and cognitive difficulties than were self-reported. Expanded Disability Status Scale score was the only neurologic variable significantly related to fatigue or quality of life scores. Fatigue was significantly correlated with reports of sleep difficulties, cognitive problems, and quality of life variables. These findings suggest that fatigue and poorer quality of life is a clear concern in pediatric MS, and is related to overall physical disability.

Pilot study exploring quality of life and barriers to leisure-time physical activity in persons with moderate to severe multiple sclerosis.

BACKGROUND: we sought to assess how impairment (physiological/psychological) and disability (social/environmental) are associated with physical and leisure/recreation activity levels and quality of life (QOL) in people with moderate/severe multiple sclerosis (MS). We conducted a cross-sectional survey at the MS Comprehensive Care Center, Stony Brook University Hospital, Stony Brook, NY, of a convenience sample of 43 people (50 eligible) with MS and Expanded Disability Status Scale scores of 6.0 to 8.0. The main outcome measures were QOL measured by MSQOL-54, physical activity measured by Physical Activity Disability Scale, and leisure/recreation activity measured by Nottingham Leisure Questionnaire. We analyzed the canonical correlations among physical and leisure/recreation activity levels and (1) impairment and (2) QOL. RESULTS: higher levels of physical and leisure/recreation activity were associated with lower levels of apathy and depression and higher levels of cognition, self-efficacy, and QOL (physical and mental). Major barriers reported included fatigue, lack of motivation, and cost. CONCLUSION: impairments and social/environmental disabilities create barriers to physical and leisure/recreation activity. Additional research is needed to determine, for people with MS, what supports might increase participation in physical and leisure/recreation activities and whether this increase yields improved QOL.

Introducing disability studies to occupational therapy students.

This article is a work of collaborative ethnography about teaching and learning disability studies within the context of an occupational therapy graduate program. In spring 2004,14 occupational therapy students were introduced to disability studies by their cultural anthropologist (nonoccupational therapist) course instructor. During the one-credit course, they were expected to complete readings, watch films, attend guest lectures, and make a site visit. The occupational therapy students were required to write a journal to record personal reactions and new insights gained from these experiences. This article focuses on a thematic analysis of the students' journaled responses to the film "Dance Me to My Song," and a site visit to a local Independent Living Center. Students were expected to analyze these experiences from both disability studies and occupational therapy perspectives. The article addresses philosophical and practical differences between occupational therapy and disability studies and identifies opportunities for collaboration between occupational therapists and independent living specialists.

Shake-It-Up: health promotion and capacity building for people with spinal cord injuries and related neurological disabilities.

PURPOSE: This is a description of a model demonstration project called Project Shake-It-Up. This project promotes the health and empowerment of people with spinal cord injuries and related neurological disabilities. It also builds the capacity of community organizations that provide services to this population. METHODS: Participants are involved in interactive seminars concerning health and advocacy on topics like nutrition and being assertive with healthcare providers. They take part in physical and recreational activities such as seat kayaking, kite-flying and hand cycling. Case coordinators support their project participation and personal goal attainment. RESULTS: Community organizations and university researchers developed a successful partnership. Individual members of the first cohort supported one another and benefited physically and psychologically. CONCLUSIONS: Project-Shake-It-Up provides positive initial signs of the value of combining the resources of universities and community agencies. Working together, these organizations can develop distinctive, multi-faceted programmes to support the health and empowerment of people with spinal cord injuries and other related neurological disabilities.

Biology, culture and cognitive disability: twentieth century professional discourse in Brazil and the United States

It compares how psychiatry, eugenics and educational ideologies were developed and adapted by professionals in Brazil and the United States throughout the twentieth century. Brazil's services are sometimes portrayed as "developmentally delayed" in comparison to those inside United States. However, an analysis of four themes influencing the development of services in both countries (eugenics, institutionalization, sterilization and sexuality) reveals that, unlike the United States, Brazilian professional discourse never constructed cognitive disability as a social or sexual threat. Historical background currently absent from existing studies on cognitive disability in Brazil is provided, intending to supplement literature concerning the way in which professional ideologies influence cultural beliefs and social practices.(AU)