Drawing upon ethnographic data from two projects, this paper focuses on interpretation issues in deaf and hard-of-hearing (DHH) individuals’ everyday lives. A specific issue is the importance of and the ways in which interpretation services and Swedish – Swedish Sign Language interpreters shape their experiences and participation. Three themes are illustrated, highlighting tensions that facilitate or obstruct DHH individuals’ participation. The analysis shows that they are positioned as both patients and citizens. Unequal power relationships position them in passive roles, as patients, with limited possibilities to shape the interpreter services, while they simultaneously shoulder major responsibility for its smooth functioning. The mundane nature of the analysis also highlights how they are accorded the position of citizen within the same services.
{"title":"Patient or Citizen? Participation and Accessibility for Deaf and Hard-of-Hearing People in the Context of Interpretation in Sweden","authors":"Ingela Holmström, Sangeeta Bagga-Gupta","doi":"10.16993/sjdr.733","DOIUrl":"https://doi.org/10.16993/sjdr.733","url":null,"abstract":"Drawing upon ethnographic data from two projects, this paper focuses on interpretation issues in deaf and hard-of-hearing (DHH) individuals’ everyday lives. A specific issue is the importance of and the ways in which interpretation services and Swedish – Swedish Sign Language interpreters shape their experiences and participation. Three themes are illustrated, highlighting tensions that facilitate or obstruct DHH individuals’ participation. The analysis shows that they are positioned as both patients and citizens. Unequal power relationships position them in passive roles, as patients, with limited possibilities to shape the interpreter services, while they simultaneously shoulder major responsibility for its smooth functioning. The mundane nature of the analysis also highlights how they are accorded the position of citizen within the same services.","PeriodicalId":46073,"journal":{"name":"Scandinavian Journal of Disability Research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41612724","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Inger Marie Lid, Hisayo Katsui, J. McLaughlin, S. Macdonald, Karin Ljuslinder, M. Tarvainen
{"title":"Interdisciplinary Disability Research in the Time of a Pandemic","authors":"Inger Marie Lid, Hisayo Katsui, J. McLaughlin, S. Macdonald, Karin Ljuslinder, M. Tarvainen","doi":"10.16993/sjdr.845","DOIUrl":"https://doi.org/10.16993/sjdr.845","url":null,"abstract":"","PeriodicalId":46073,"journal":{"name":"Scandinavian Journal of Disability Research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-08-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43386478","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Disability studies has long been based primarily on theories and practices in the global North also in the Scandinavian Journal of Disability Research. Today there is an increase in disability research conducted in the global South. Yet, many studies continue to frame data using already existing concepts, debates and research strategies from the global North, focusing less on building theory situated in the global South. The reliance on theories developed in the global North may reinforce the epistemic vulnerability of disability studies in the global South. As disability studies as a whole is concerned with the politics of voice, in this special section, therefore, we explicitly aimed at triggering critical discussion on how to develop research methods and practices in contexts outside the global North. The four papers in this section challenge us and our epistemological and methodological norms towards more nuanced approaches in each research context. The lessons to be learned from these papers go beyond issues in the global South. The great heterogeneity of disability and its contexts, as well as its evolving nature, mean that we must all think deeply about interconnectedness, relationality, and continuity of disability with other phenomenon across different time and space. The global perspective to disability simultaneously teaches us the global structures of inequalities beyond country borders.
{"title":"Research Methods and Practices of Doing Disability Studies in the Global South","authors":"Hisayo Katsui, L. Swartz","doi":"10.16993/sjdr.841","DOIUrl":"https://doi.org/10.16993/sjdr.841","url":null,"abstract":"Disability studies has long been based primarily on theories and practices in the global North also in the Scandinavian Journal of Disability Research. Today there is an increase in disability research conducted in the global South. Yet, many studies continue to frame data using already existing concepts, debates and research strategies from the global North, focusing less on building theory situated in the global South. The reliance on theories developed in the global North may reinforce the epistemic vulnerability of disability studies in the global South. As disability studies as a whole is concerned with the politics of voice, in this special section, therefore, we explicitly aimed at triggering critical discussion on how to develop research methods and practices in contexts outside the global North. The four papers in this section challenge us and our epistemological and methodological norms towards more nuanced approaches in each research context. The lessons to be learned from these papers go beyond issues in the global South. The great heterogeneity of disability and its contexts, as well as its evolving nature, mean that we must all think deeply about interconnectedness, relationality, and continuity of disability with other phenomenon across different time and space. The global perspective to disability simultaneously teaches us the global structures of inequalities beyond country borders.","PeriodicalId":46073,"journal":{"name":"Scandinavian Journal of Disability Research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-07-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45469541","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
User involvement in technology design processes can have positive implications for the designed service, but less is known about how such participation affects people with intellectual disabilities. We explored how 13 individuals with intellectual disabilities experienced participation in the design of a transport support application. The study is based on qualitative interviews, photovoice interviews, participant observations, and Smileyometer ratings. A thematic analysis generated the following themes: a sense of pride and ownership, an experience of socialization, and a sense of empowerment. The findings suggest that participation in design activities is a primarily positive experience that develops the participants’ skills. However, experiences such as boredom may occur. The variability within the experiences of the participants show that it is crucial to be aware of individuality, preferences, and personal interests when designing with people with intellectual disabilities.
{"title":"‘I Got To Answer the Way I Wanted To’: Intellectual Disabilities and Participation in Technology Design Activities","authors":"Mugula Chris Safari, Sofie Wass, E. Thygesen","doi":"10.16993/SJDR.798","DOIUrl":"https://doi.org/10.16993/SJDR.798","url":null,"abstract":"User involvement in technology design processes can have positive implications for the designed service, but less is known about how such participation affects people with intellectual disabilities. We explored how 13 individuals with intellectual disabilities experienced participation in the design of a transport support application. The study is based on qualitative interviews, photovoice interviews, participant observations, and Smileyometer ratings. A thematic analysis generated the following themes: a sense of pride and ownership, an experience of socialization, and a sense of empowerment. The findings suggest that participation in design activities is a primarily positive experience that develops the participants’ skills. However, experiences such as boredom may occur. The variability within the experiences of the participants show that it is crucial to be aware of individuality, preferences, and personal interests when designing with people with intellectual disabilities.","PeriodicalId":46073,"journal":{"name":"Scandinavian Journal of Disability Research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-07-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47763246","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Autistic people and people with an intellectual disability have been actively involved in disability advocacy; however, it is still often parents and professionals who lead organisations speaking on their behalf. Previous studies have found that autistic self-advocates and self-advocates with an intellectual disability have been systematically marginalised in the disability movement. This article appraises how economic factors influence self-advocates’ position within the disability movement, based on qualitative analysis of data collected in two countries, the UK and Hungary. The study found that lack of resources, poverty and unpaid positions at organisations strongly hinder self-advocates’ participation in advocacy/disability rights organisations speaking for them. Findings also suggest that practices of disability organisations may contribute to maintaining these barriers.
{"title":"‘Even a Self-Advocate Needs to Buy Milk’ – Economic Barriers to Self-Advocacy in the Autism and Intellectual Disability Movement","authors":"G. Petri, J. Beadle‐Brown, J. Bradshaw","doi":"10.16993/SJDR.738","DOIUrl":"https://doi.org/10.16993/SJDR.738","url":null,"abstract":"Autistic people and people with an intellectual disability have been actively involved in disability advocacy; however, it is still often parents and professionals who lead organisations speaking on their behalf. Previous studies have found that autistic self-advocates and self-advocates with an intellectual disability have been systematically marginalised in the disability movement. This article appraises how economic factors influence self-advocates’ position within the disability movement, based on qualitative analysis of data collected in two countries, the UK and Hungary. The study found that lack of resources, poverty and unpaid positions at organisations strongly hinder self-advocates’ participation in advocacy/disability rights organisations speaking for them. Findings also suggest that practices of disability organisations may contribute to maintaining these barriers.","PeriodicalId":46073,"journal":{"name":"Scandinavian Journal of Disability Research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-07-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43080406","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Jeff D Grischow, Augustina Naami, W. Mprah, Magnus Mfoafo-M’Carthy
This article discusses methodological challenges encountered during a collaborative North-South research project. Based on fieldwork on the oral history of disability rights in Ghana, we argue that conducting research in the global South requires adapting international research methodologies to Southern socio-cultural contexts. Adaptations are needed in all stages, including ethics (where trust-building and culturally informed consent are vitally important), recruitment (which must consider local socio-cultural factors), and data collection and analysis (where flexibility and adaptiveness are essential in response to the lived reality of participants with different disability types). We conclude that flexible, collaborative methods can produce results that reflect the lived experiences of persons with disabilities in the global South, while following international methodological norms.
{"title":"Methodologically Thinking: Doing Disability Research in Ghanaian Cultural Communities","authors":"Jeff D Grischow, Augustina Naami, W. Mprah, Magnus Mfoafo-M’Carthy","doi":"10.16993/sjdr.702","DOIUrl":"https://doi.org/10.16993/sjdr.702","url":null,"abstract":"This article discusses methodological challenges encountered during a collaborative North-South research project. Based on fieldwork on the oral history of disability rights in Ghana, we argue that conducting research in the global South requires adapting international research methodologies to Southern socio-cultural contexts. Adaptations are needed in all stages, including ethics (where trust-building and culturally informed consent are vitally important), recruitment (which must consider local socio-cultural factors), and data collection and analysis (where flexibility and adaptiveness are essential in response to the lived reality of participants with different disability types). We conclude that flexible, collaborative methods can produce results that reflect the lived experiences of persons with disabilities in the global South, while following international methodological norms.","PeriodicalId":46073,"journal":{"name":"Scandinavian Journal of Disability Research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-07-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46761253","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Universal design (UD) is a concept that originates in architecture and design. Through its enrollment in the United Nations Convention on the Rights of Persons with Disabilities (CRPD), UD may contribute to the realisation of a more inclusive society. By means of qualitative interviews and content analysis, this study deepens the knowledge about how UD is understood, practised and realised in Sweden. Eight professionals from academia, business, civil society and the public sector were interviewed in 2019. They expressed a breadth of personal and non-authoritative opinions about UD and viewed it as enriching and provocative but also fuzzy and difficult to grasp, especially in relation to accessibility. Three ways of talking about UD were discerned: as guiding principle in the design process, as striving for an inclusive society and as unifying policies into a whole. Together they elucidate the implementation of the CRPD and inspire engagement for social innovation.
{"title":"Universal Design as Guiding, Striving and Unifying: A Qualitative Study about how Universal Design is Understood, Practised and Realised in Contemporary Sweden","authors":"Emil Erdtman, K. Rassmus-Gröhn, P. Hedvall","doi":"10.16993/sjdr.770","DOIUrl":"https://doi.org/10.16993/sjdr.770","url":null,"abstract":"Universal design (UD) is a concept that originates in architecture and design. Through its enrollment in the United Nations Convention on the Rights of Persons with Disabilities (CRPD), UD may contribute to the realisation of a more inclusive society. By means of qualitative interviews and content analysis, this study deepens the knowledge about how UD is understood, practised and realised in Sweden. Eight professionals from academia, business, civil society and the public sector were interviewed in 2019. They expressed a breadth of personal and non-authoritative opinions about UD and viewed it as enriching and provocative but also fuzzy and difficult to grasp, especially in relation to accessibility. Three ways of talking about UD were discerned: as guiding principle in the design process, as striving for an inclusive society and as unifying policies into a whole. Together they elucidate the implementation of the CRPD and inspire engagement for social innovation.","PeriodicalId":46073,"journal":{"name":"Scandinavian Journal of Disability Research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-06-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42772665","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Katherine Graham, Jenni Brooks, Jane Maddison, Y. Birks
Disabled people are under-represented and can experience discrimination in the workplace in the UK and globally. The employment of a Workplace Personal Assistant (WPA) is an option for disabled people who require assistance to undertake their job role. The WPA role is designed to increase the accessibility of the workplace via personalised and self-directed assistance, yet is little known or understood. The dynamics of these assistance relationships are explored from analysis of interviews with disabled people, their WPAs and representatives of the organisations in which they work. Disabled people who use a WPA undertake two jobs in one day - their substantive role and the management of their WPA. Understanding these dual roles, and recognising the subtle skills required and additional labour undertaken, can help to challenge the ableist assumptions which shape the workplace and help open up the workplace for disabled people who require a WPA.
{"title":"Two Jobs in One Day: Exploring the Dynamics of Personal Assistance Relationships in the Workplace","authors":"Katherine Graham, Jenni Brooks, Jane Maddison, Y. Birks","doi":"10.16993/SJDR.761","DOIUrl":"https://doi.org/10.16993/SJDR.761","url":null,"abstract":"Disabled people are under-represented and can experience discrimination in the workplace in the UK and globally. The employment of a Workplace Personal Assistant (WPA) is an option for disabled people who require assistance to undertake their job role. The WPA role is designed to increase the accessibility of the workplace via personalised and self-directed assistance, yet is little known or understood. The dynamics of these assistance relationships are explored from analysis of interviews with disabled people, their WPAs and representatives of the organisations in which they work. Disabled people who use a WPA undertake two jobs in one day - their substantive role and the management of their WPA. Understanding these dual roles, and recognising the subtle skills required and additional labour undertaken, can help to challenge the ableist assumptions which shape the workplace and help open up the workplace for disabled people who require a WPA.","PeriodicalId":46073,"journal":{"name":"Scandinavian Journal of Disability Research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-06-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46290595","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
This qualitative study, based on semi-structured interviews with eight parents with disabilities and five personal assistants, explores two different but interrelated perspectives: how parents with extensive physical disabilities use personal assistants in their parenting strategies and how personal assistants experience assisting in parenting strategies. The assistance users’ parenting strategies are affected by gender, age of the children and whether the disabilities were congenital or acquired later in life. The assistants were seen as enablers, competitors for the child’s love or compensators. Access to personal assistance has increased parents’ possibilities to be active in their parenting. However, total adaptation to the assistance user’s parenting strategies could be challenging for assistants with different parenting ideals. There is a need for discussions on how assistants can work to strengthen parenting roles as well as receive support to work in a sustainable way.
{"title":"Parenting with Assistance – The Views of Disabled Parents and Personal Assistants","authors":"Viveca Selander, Kristina Engwall","doi":"10.16993/SJDR.775","DOIUrl":"https://doi.org/10.16993/SJDR.775","url":null,"abstract":"This qualitative study, based on semi-structured interviews with eight parents with disabilities and five personal assistants, explores two different but interrelated perspectives: how parents with extensive physical disabilities use personal assistants in their parenting strategies and how personal assistants experience assisting in parenting strategies. The assistance users’ parenting strategies are affected by gender, age of the children and whether the disabilities were congenital or acquired later in life. The assistants were seen as enablers, competitors for the child’s love or compensators. Access to personal assistance has increased parents’ possibilities to be active in their parenting. However, total adaptation to the assistance user’s parenting strategies could be challenging for assistants with different parenting ideals. There is a need for discussions on how assistants can work to strengthen parenting roles as well as receive support to work in a sustainable way.","PeriodicalId":46073,"journal":{"name":"Scandinavian Journal of Disability Research","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2021-05-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45029503","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
L. Müller, Stina Ericsson, Daniel Wojahn, P. Hedvall
The focus of this study is how intended users of the built environment are categorized in strategies, policies, and guidelines for the planning and building process. The image of the intended user reflects a disabling society that also is in conflict with established policies on a society for all. Patterns of inequality are found in the materials, both within and across groups of users. With youth, health, and mobility in the foreground, older persons and persons with disabilities are almost never evident. Disability is made visible only through its mirror: the ability norm. In the review of planning documents from a medium-sized Swedish municipality, the study sought to identify if and how users are described and to analyse which users are included in or excluded from the urban environment during planning stages. The article argues that new ways of thinking, to include a diversity perspective in planning, are needed.
{"title":"Young, Mobile, and Highly Educated Cyclists: How Urban Planning and Policy Dis/able Users","authors":"L. Müller, Stina Ericsson, Daniel Wojahn, P. Hedvall","doi":"10.16993/SJDR.731","DOIUrl":"https://doi.org/10.16993/SJDR.731","url":null,"abstract":"The focus of this study is how intended users of the built environment are categorized in strategies, policies, and guidelines for the planning and building process. The image of the intended user reflects a disabling society that also is in conflict with established policies on a society for all. Patterns of inequality are found in the materials, both within and across groups of users. With youth, health, and mobility in the foreground, older persons and persons with disabilities are almost never evident. Disability is made visible only through its mirror: the ability norm. In the review of planning documents from a medium-sized Swedish municipality, the study sought to identify if and how users are described and to analyse which users are included in or excluded from the urban environment during planning stages. The article argues that new ways of thinking, to include a diversity perspective in planning, are needed.","PeriodicalId":46073,"journal":{"name":"Scandinavian Journal of Disability Research","volume":"23 1","pages":"124-135"},"PeriodicalIF":0.0,"publicationDate":"2021-04-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43488602","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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