| 1. |
- Bahner, Julia, et al.
(författare)
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Access to sexuality : Disabled people's experiences of multiple barriers
- 2021
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Ingår i: Accessibility Denied : Understanding Inaccessibility and Everyday Resistance to Inclusion for Persons with Disabilities - Understanding Inaccessibility and Everyday Resistance to Inclusion for Persons with Disabilities. - 9781003120452 ; , s. 123-139
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Bokkapitel (refereegranskat)abstract
- This chapter concerns disabled people’s experiences of barriers to accessing sexuality. It draws on an analysis of materials produced in ten projects by civil society organisations, including self-advocacy organisations, sexual rights organisations and organisations working on behalf of disabled people. These materials comprise books, handbooks, videos, websites and other online materials, and are based on the lived experiences of people with intellectual disability and mobility impairments. The projects mainly focus on providing information about sexuality and relationships, sexual and gender identity issues, and experiences of disability services in relation to sexuality. The analysis identifies the following types of sexual access barriers: (1) inadequate information, (2) psycho-emotional barriers, (3) relational barriers, (4) support-related barriers, and (5) policy barriers. These barriers to sexual access are often related to general disabling barriers and ableist norms. This intersection of barriers at personal, social, organisational and policy levels greatly impacts on disabled people’s opportunities in their sexual lives specifically, and as equal citizens generally.
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| 2. |
- Bahner, Julia, et al.
(författare)
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Alison Kafer: Med blicken på funktionsmaktordningen
- 2022
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Ingår i: Teorier för socialt arbete : Del 2, Normalitet, förkroppsligad erfarenhet och motstånd - Del 2, Normalitet, förkroppsligad erfarenhet och motstånd. - 9789151107639 ; , s. 143-157
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Bokkapitel (refereegranskat)
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| 3. |
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| 4. |
- Bahner, Julia, et al.
(författare)
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"Att leva som andra" – även när det gäller sexualitet?
- 2018
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Ingår i: Forskning om personlig assistans : en antologi - en antologi. - 9789163999710 ; , s. 85-96
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Ett kapitel baserat på forskning om personlig assistans och rätten för en människamed normbrytande funktion att utveckla en egen sexualitet, med diskussion om hur dessa svenska förhållanden förhåller sig till liknande frågor i andra länder.
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| 5. |
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| 6. |
- Bahner, Julia
(författare)
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Cripping sex education: lessons learned from a programme aimed at young people with mobility impairments
- 2018
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Ingår i: Sex Education-Sexuality Society and Learning. - : Informa UK Limited. - 1468-1811 .- 1472-0825. ; 18:6, s. 640-654
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Tidskriftsartikel (refereegranskat)abstract
- This paper analyses sexuality and relationship education (SRE) in a Swedish college programme aimed at young people with mobility impairments. Interviews and focus groups were conducted to explore students' experiences of the structure, content and usefulness of SRE, and college personnel's SRE practices. Results show that, although many of the issues covered are pertinent for all young people, being disabled raises additional concerns: for example how to handle de-sexualising attitudes, possible sexual practices, and how reliance on assistance impacts upon privacy. Crip theory is used as an analytical framework to identify, challenge and politicise sexual norms and practices. Students' experiences of living in a disablist, heteronormative society can be used as resources for developing cripistemologies, which challenge the private/public binary that often de-legitimises learners' experiences and separates them from teachers' proper' knowledge production. Crip SRE would likely hold benefits for non-disabled pupils as well, through its use of more inclusive pedagogy and in work to expand sexual possibilities. Crip SRE has the potential to disrupt taken-for-granted dis/ability and sexuality divides as well as to politicise issues that many young people presently experience as personal shortcomings'.
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| 7. |
- Bahner, Julia
(författare)
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Disabiliy, sexuality and personal assistance – what is quality of life?
- 2010
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Ingår i: Disability Studies Conference ‘Diversity in Quality of Life’ in Amsterdam, 2-4 dec 2010.
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Konferensbidrag (refereegranskat)abstract
- Aim. The aim of this study was to analyze the living conditions of physically disabled people from the viewpoint of sexuality issues with regards to personal assistance services, identity and attitudes in society on disability and sexuality. Methods. Interviews were conducted with ten physically disabled people, a personal assistant and a physically disabled person working with a project on disability, sexuality and personal assistance issues in the Federation of Young Disabled. In addition, Internet observations were conducted in the forum of a Swedish disability site. The data has been analyzed using grounded theory. Findings. Not much research is done on sexuality issues for physically disabled people. Even though we live in a society where sexuality takes up a lot of space in the media, the culture and is acknowledged to be of great importance for every person’s wellbeing, the sexuality of disabled people is often not recognized and discussed. We have little knowledge of how these attitudes influence physically disabled people and their forming of a desired identity and sexuality. Disability and sexuality is explained in terms of being socially constructed. Using the social model of disability and the theory of sexual scripting (Simon & Gagnon 1984), the results show that disabled people’s sexuality can be surrounded by barriers of societal and professional taboos and judgmental attitudes. This makes the experience of identity, personal assistance and sexuality ambivalent for the individual. Conclusions. Forming a desired sexuality and identity can be harder for physically disabled people in terms of fighting against judgmental attitudes about both disability, personal assistance and sexuality, when struggling for recognition as a sexual being and forming a sexuality which includes the desired components of assistance or otherwise. From a human rights and sexual health rights perspective it’s interesting to discuss whether or not disabled people have the same rights to their sexuality as non disabled people and what could count as quality of life in the area of sexuality in this context.
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| 8. |
- Bahner, Julia
(författare)
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Disabled sexuality? Exploring sexuality issues for physically disabled users of personal assistance services
- 2011
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Ingår i: Nordic Network on Disability Research: 11th research conference, Reykjavik, Iceland, 26-26 man 2011.
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Konferensbidrag (refereegranskat)abstract
- Aim. The aim was to analyze the living conditions of physically disabled people from the viewpoint of sexuality issues with regards to personal assistance services, identity and attitudes in society on disability and sexuality. The study is part of a work in progress in the PhD programme, where personal assistants’ and their supervisors’ views on these issues will be studied. Methods. Semi-structured interviews were conducted with ten physically disabled people. In addition, Internet observations were conducted in the forum of a Swedish disability site. The data has been analyzed using grounded theory. Findings. Disability and sexuality is explained in terms of being socially constructed. Using the social model of disability and the theory of sexual scripting (Simon & Gagnon 1984), the results show that disabled people’s sexuality and use of personal assistance is often surrounded by barriers of societal and professional taboos and judgmental attitudes. This makes the experience of identity, personal assistance and sexuality ambivalent for the individual. Conclusions. Forming a desired sexuality and identity can be harder for physically disabled people in terms of fighting against judgmental attitudes about disability, personal assistance and sexuality. Due to the feelings of ambivalence concerning the experiences of sexuality, identity and personal assistance, physically disabled people are often struggling for recognition to be seen as sexual beings and to be able to form a sexuality which includes the desired components of assistance or otherwise. From a human rights and sexual health rights perspective it’s interesting to discuss whether or not disabled people have the same rights to their sexuality as non disabled people.
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| 9. |
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| 10. |
- Bahner, Julia
(författare)
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Legal Rights or Simply Wishes? The Struggle for Sexual Recognition of People with Physical Disabilities Using Personal Assistance in Sweden
- 2012
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Ingår i: Sexuality and Disability. - : Springer Science and Business Media LLC. - 0146-1044 .- 1573-6717. ; 30:3, s. 337-356
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of this study is to explore the lived experience of sexuality for people with physical disabilities using formal personal assistance services in Sweden, from their own perspective. This is analyzed in relation to the aims of personal assistance services according to Swedish law, which states that they should be framed in terms of autonomy, integrity and self-determination making it possible to live a good life, on the same terms as non-disabled people. Data were collected through face-to-face interviews with ten assistance users and through observations on an online discussion forum for people with disabilities. The main findings of the study concern participants’ struggle to be recognized as sexual beings in order to be able to live as desired, as well as the different strategies needed to overcome obstacles in sexual expression. Results indicate the need to train personal assistants about handling assistance users’ sexuality and sexual situations.
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| 11. |
- Bahner, Julia
(författare)
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Mapping the terrain of disability and sexuality: from policy to practice
- 2019
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Ingår i: Ars Vivendi Journal.
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- This paper is based on a lecture held in Nagoya, Japan as part of a seminar on issues relating to disabled women, sexuality and sexual and reproductive health and rights (SRHR). I present preliminary results from the research project Sexual Citizenship and Disability: Implications for Theory, Practice and Policy, which focuses on sexual rights for people with mobility impairments. The data comprises policy analysis and interviews with organizations working with sexuality and disability issues in Sweden, the Netherlands, England and Australia. While this paper has a somewhat broader approach than the seminar in Nagoya, the themes are nevertheless relevant to disabled women. I give examples of policies and work by organizations around disabled women’s rights, sex education, sexual and reproductive health and rights (SRHR), and different kinds of sexual support services. The research demonstrates the variability of how sexual rights are understood and their culturally-specific nature. It shows how the personal is indeed political: states’ different policy approaches change the outcomes for disabled people in terms of support to explore and express their sexualities. The role of the disability movement, and which issues it takes up, is also influenced by the policy landscape. This highlights how some of the organizations inadvertently adapt to what is deemed as ‘policy-relevant’ and how sexual rights are often less a priority than other rights – especially in times of austerity.
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| 12. |
- Bahner, Julia, et al.
(författare)
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Motivational Interviewing as Evidence-Based Practice? An Example from Sexual Risk Reduction Interventions Targeting Adolescents and Young Adults
- 2020
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Ingår i: Sexuality Research and Social Policy. - : Springer Science and Business Media LLC. - 1868-9884 .- 1553-6610. ; 17:2, s. 301-313
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Tidskriftsartikel (refereegranskat)abstract
- This paper critically examines sexual risk reduction interventions, more specifically how they are evaluated and the implications that this has for sexual health policy. The focus is on motivational interviewing (MI) interventions which aim to promote protective behaviors related to sexual risk on the part of young people. MI has become increasingly popular, largely due to it being a highly flexible counseling approach that may, with adequate staff training, and fidelity in implementation, be tailored to many different settings (e.g., health care, schools and in community work). Following a scoping review that comprised 34 papers, of which 29 were unique studies, the range and type of existing research were examined. The results show a wide range of study designs and evaluation procedures, MI conceptualizations, modes of MI delivery, and the particular sub-populations of youth and sexual risk behaviors targeted. While this makes it difficult to draw any generalized conclusions about “what works” in prevention, it provides important insights about the complexity of sexual risk behavior as well as complex behavioral treatment approaches like MI. We therefore problematize the political drive to implement evidence-based methods without adequate resource allocation and contextual adaptation.
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| 13. |
- Bahner, Julia
(författare)
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Motiverande samtal med unga om sexuell hälsa. En kartläggande litteraturöversikt inom området hivprevention samt sexuell och reproduktiv hälsa och rättigheter (SRHR)
- 2018
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- Denna rapport handlar om motiverande samtal (MI) bland unga och unga vuxna (16-29 år) inom områdena hivprevention samt sexuell och reproduktiv hälsa och rättigheter (SRHR). Rapporten är baserad på en granskning och bedömning av vetenskaplig litteratur som genomfördes under 2016. Utgångspunkten är Folkhälsomyndighetens arbete med den nationella strategin mot hiv och aids och vissa andra smittsamma sjukdomar. Förhoppningen är att rapporten kan bidra med kunskap för hälsofrämjande och sjukdomsförebyggande arbete.Litteraturgenomgången visar att det svårt att svara på om MI-interventioner riktade till unga risktagare har effekt när det gäller att förebygga hiv, STI och oönskade graviditeter. Kunskapsläget är därmed oklart. Det framkommer att en del studier uppvisar effekter, men att effekterna ofta avtar över tid. Då kunskapsläget är oklart är det angeläget att verksamheter som använder sig av MI, i syfte att förebygga sexuellt risktagande bland unga, systematiskt följer upp och utvärderar sin verksamhet.Rapporten riktar sig främst till yrkesverksamma och beslutsfattare inom landsting, kommuner, det civila samhällets organisationer samt relevanta myndigheter och yrkesföreningar. Den vänder sig specifikt till alla som kommer i kontakt med unga och unga vuxna inom exempelvis socialtjänst, statlig samhällsvård, barn- och ungdomspsykiatri, elevhälsa samt hälso- och sjukvård.
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| 14. |
- Bahner, Julia
(författare)
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Nothing About Us Without … Who? Disability Rights Organisations, Representation and Collaborative Governance
- 2022
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Ingår i: The International Journal of Disability and Social Justice. - : Pluto Journals. - 2732-4036 .- 2732-4044. ; 2:2
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Tidskriftsartikel (refereegranskat)abstract
- When governments invite disability rights organisations to policy deliberations, how does the slogan ‘nothing about us without us’ translate into practice? This article draws upon a study about local disability organisations and their relationship to a regional consultative citizens’ council on disability issues in Sweden. Interviews were conducted with organisations that had seats on the council, politicians and officials on the council, as well as with disability organisations without seats on the council. Results show that conceptualisations of ‘disability’ in policies that regulate deliberations not only define what type of organisations are eligible for appointment to the council, but also influence how disability organisations identify, present themselves and what issues they advocate for – leading to divisions among organisations. The findings have implications for collaborative governance structures and disability rights organisations elsewhere – problematising issues around representation, institutionalisation of inclusion and the constantly evolving concept of what counts as ‘disability’.
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| 15. |
- Bahner, Julia
(författare)
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On who’s terms? Sexuality issues in personal assistance services in Sweden
- 2012
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Ingår i: Theorizing Normalcy and the Mundane: 3rd International conference, Chester, England, 25-26 jun 2012.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The impact of sexuality on our identity and general well-being is uncontested. However, for physically disabled people sexuality is still in many situations a taboo and it may therefore be harder to express sexuality and live your life as desired. Personal assistance services (PAS) are considered a right in Sweden since the Support and Service for Persons with Functional Impairments Act (LSS 1993:387) came into effect in 1994. The intention, based on independent living ideology, was to make it possible to be able to live in the community under good living conditions and on the same terms as non-disabled people according to the guiding terms of autonomy, integrity and self-determination. However, regarding sexuality there has been no consideration and there is a great lack of knowledge in how to deal with assistance users’ sexuality. Hence, there is often insecurity about how to handle situations concerning sexuality, both among assistance users, assistants and assistance providers. This presentation draws on results from a study of the lived experiences regarding sexuality for physically disabled users of PAS, and preliminary results from an ongoing study on personal assistants’ opinions on sexuality in relation to PAS. Focus is on how able-bodied sexual values restrict possibilities to sexual expression and how this is sometimes played out through the emotional and moral work that is part of PAS. Data were collected through interviews and through observations on online discussion forums. The main finding of the study concerns assistance users’ wishes to be recognized as sexual beings in order to be able to live according to their desires. On the contrary, personal assistants expressed a wish to be able to do their job under adequate working conditions, in which sexuality was not always viewed as a part. The study will continue to research the opinions of PAS providers.
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| 16. |
- Bahner, Julia
(författare)
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Policy for whom? The silence of sexuality and its consequences in disability services
- 2016
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Ingår i: Lancaster disability studies conference, 6-8 sept, Lancaster, England.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The law governing Swedish personal assistance services aim to provide eligible service users with the possibility to “live a life like others”. What this means in terms of sexuality is not mentioned in the law and there are no related policies or guidelines – often leading to insecurity among service users and personnel whether or not sexual facilitation is sanctioned. This insecurity is further deepened as the Work Environment Law states that the personnel‘s working conditions must be physically and psychologically adequate – the latter giving room for moral values guiding service provision. Hence, the issue of sexual facilitation is surrounded by silence, ambiguity and normativity. The background to this presentation are three empirical studies concerning how people with impaired mobility using personal assistance services, personal assistants and managers, experience and conceptualise sexual facilitation. In this presentation, a fourth study will be in focus; an analysis of conceptualisations around disability, sexuality/sexual facilitation and professionalism in the few existing texts dealing with these issues: two non-binding statements by the Ethics Board’s Social Committee with the Swedish National Board of Health and Welfare, and a handbook by The Federation of Youth with Impaired Mobility. Contradictions between a service user and a worker perspective are highlighted, relating to differences in understandings what can be considered “normal” sexual practices in welfare services. The presentation will discuss and problematize 1) the normative nature of policy and specifically how to balance giving room for a variety of individual approaches in line with Independent Living ideology, and simultaneously making sure these are non-discriminatory, 2) how policy can balance protecting service users’ sexual rights and assistants’ rights to an adequate work environment, and 3) how to influence a policy discourse where sexual facilitation is understood as an individualized and depolitized issue, with moral undertones evident.
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| 17. |
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| 18. |
- Bahner, Julia
(författare)
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Risky business? Organizing sexual facilitation in Swedish personal assistance services
- 2016
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Ingår i: Scandinavian Journal of Disability Research. - : Stockholm University Press. - 1501-7419 .- 1745-3011. ; 18:2, s. 164-175
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Tidskriftsartikel (refereegranskat)abstract
- Despite nearly two decades of disability research highlighting the need to take greater account of disabled people's sexualities, sexuality is still largely a taboo subject in disability services, thus limiting service users’ possibilities to express their sexuality. In this article, I aim to show how Swedish personal assistance managers organize sexual facilitation, that is, assistance from personnel in service users’ sexual engagement. The article draws on findings from a focus group study with managers of municipal and private service providers. Three main themes are discussed: the managers’ different ways of organizing sexual facilitation; how they conceptualize sexuality and normality; and risk management practices. I argue that societal discourse on sexual normality greatly influences managers’ views on and strategies for organizing sexual facilitation. Hence, sexual facilitation in personal assistance services is viewed as a non-normative form of sexuality and a work-related risk rather than a possibility to increase service users’ sexual rights.
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| 19. |
- Bahner, Julia
(författare)
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Rättigheters gränser: om sexualitet och funktionshinder
- 2016
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Ingår i: Social exkludering. Perspektiv, process, problemkonstruktion. - Lund : Studentlitteratur. - 9789144109824 ; , s. 139-160
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Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Fokus i detta kapitel är hur sexualitet hanteras inom personlig assistans för personer med rörelsehinder. Tre berörda parter kommer till tals: assistansanvändare, personliga assistenter och chefer. Dessutom ges exempel ur dokument som behandlar frågan och som kan påverka verksamheternas arbete – men framför allt belysa den dominerande diskursen kring hur sexualitet, funktionshinder och professionalism kan förstås. Syftet med kapitlet är att analysera hur den lagstiftning som styr personlig assistans genom ett starkt rättighets- och inkluderingsfokus skapar dilemman i omsättande av de abstrakta rättigheterna i praktiken.
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| 20. |
- Bahner, Julia
(författare)
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Sexual Citizenship and Disability: Understanding Sexual Support in Policy, Practice and Theory
- 2019
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Bok (övrigt vetenskapligt/konstnärligt)abstract
- What does ‘sexual citizenship’ mean in practice for people with mobility impairments who may need professional support to engage in sexual activity? The book explores this subject through empirical investigation based on case studies conducted in four countries – Sweden, England, Australia and the Netherlands – and develops the abstract notion of ‘sexual citizenship’ to make it practically relevant to disabled people, professionals in disability services and policy-makers. Through a cross-national approach, it demonstrates the variability of how sexual rights are understood and their culturally specific nature. It also shows how the personal is indeed political: states’ different policy approaches change the outcomes for disabled people in terms of support to explore and express their sexualities. By proposing a model of sexual facilitation that can be used in policy development, to better cater to disabled service users’ needs as well as furthering the theoretical understanding of sexual rights and sexual citizenship, this book will be of interest to professionals in disability services and policy-makers as well as academics and students working in the following subject areas: Disability Studies, Sociology, Social Policy, Sexuality Studies/Sexology, Social Work, Nursing, Occupational Therapy and Public Health.
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| 21. |
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| 22. |
- Bahner, Julia
(författare)
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Sexual professionalism: for whom? The case of sexual facilitation in Swedish personal assistance services
- 2015
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Ingår i: Disability & Society. - : Informa UK Limited. - 0968-7599 .- 1360-0508. ; 30:5, s. 788-801
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Tidskriftsartikel (refereegranskat)abstract
- Sexuality is a taboo subject in disability services, leading to insecurity for both service users and personnel about how to handle upcoming situations. In Sweden, there is also a lack of policy in this area, highlighting the need to study sexuality both as an individual and a political, and in this case also, depoliticized issue. A critical feminist policy analysis reveals that norms around disability, sexuality and professionalism in a particular legal, political and cultural context strongly influence the willingness to recognize disabled people’s sexual rights. The Swedish case indicates a need for increased transnational work to develop ethical, professional and non-discriminatory rights-based approaches to sexual facilitation.
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| 23. |
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| 24. |
- Bahner, Julia
(författare)
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Sexuality: a risk or a right? Conceptualisations of sexual expression by personnel in disability services
- 2016
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Ingår i: Alter - European Society for Disability Research Conference, 30/6-1/7, Stockholm.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Most people adhere to an understanding of sexuality as a fundamental human need, which includes the right to sexual expression and sexual health. However, the sexuality of disabled people is often disregarded, in cultural contexts as well as in disability services, where personnel often lack adequate competence to be able to handle sexual expression in a non-discriminatory way. This presentation is based on a research study concerning the thoughts and experiences of personnel in Swedish personal assistance services about sexual expression in their work with mobility disabled people. Specifically, the concept of sexual facilitation is discussed, i.e. the assistance potentially needed for assistance users to be able to express their sexuality as desired. Individual interviews were conducted with 15 personal assistants and three focus group discussions were conducted with ten managers. The informants worked mainly with municipal and private service providers. Results show that the specific characteristics of Swedish personal assistance services influence how sexual facilitation is conceptualised and handled. For example, since sexuality is not mentioned in the rights-based law governing disability services and its preparatory work, or in other types of regulations and guidelines, several personnel either do not expect having to work with the assistance users’ sexuality, or are very insecure about how to handle upcoming situations. Furthermore, the law that the services are based on, aiming to give the possibility for individualized services, leads to a great discretion for personnel in handling sexuality according to their personal values and norms, which are sometimes discriminatory. Hence, the silence of sexuality in disability policy, combined with a lack of organisational support for learning about and working with sexuality, may lead to assistance users being unable to express their sexuality in the desired way, which in the long run, may reproduce disabling structures hindering equal citizenship and participation in society.
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| 25. |
- Bahner, Julia
(författare)
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Sexuality, disability and personal assistance services: a risk or a right?
- 2016
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Ingår i: International Academy of Sex Research Conference, 26-29 juni, Malmö.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Most people adhere to an understanding of sexuality as a fundamental human need, which includes the right to sexual expression. However, the sexuality of disabled people is often disregarded, in cultural contexts as well as in disability services, where personnel often lack adequate competence to handle sexual expression adequately. This presentation is based on a qualitative research study concerning the thoughts and experiences of personnel in Swedish personal assistance services (PAS) about sexual expression in their work with people who have impaired mobility. Specifically, the concept of sexual facilitation is discussed, i.e. the service potentially needed for assistance users to be able to conduct their sexual activity as desired. Sexual facilitation is not regulated within the Swedish disability services law (LSS) and few other official documents on the subject exist. Furthermore, the Work Environment Law states that the personal assistants’ working conditions must be both physically and psychologically adequate. This policy context results in insecurity whether or not sexual facilitation is sanctioned. Research Questions: PAS aim to make it possible for service users to ‘live a life like anybody else’, on the same terms as non-disabled citizens according to the law’s (LSS) guiding principles of autonomy, integrity, self-determination and, additionally, under good living conditions. How do the personnel conceptualize sexual facilitation in relation to these aims? How can the aims be understood in relation to the managers’ responsibility to give personal assistants proper working conditions? How is sexual facilitation conceptualized in relation to sexual norms? Methods: Individual interviews were conducted with 15 personal assistants and three focus group discussions were conducted with ten managers. The informants worked mainly with municipal and private service providers. In the center of analysis is an understanding of bodily functioning, sexuality and professionalism as infused with normative ideas influencing how service provision is carried out in practice. An intersectional perspective is used to analyze power structures and the influence of norms around disability and sexuality. Results: Results show that bodily ideals and what is considered “normal” ways of conducting sexual activity, in combination with personal values around sexuality, influence personnel in deciding who does what, for whom, how, and why (or why not). Sexual facilitation is often conceptualized as a work environment risk on the basis of sexual activity being something too private for personnel having to deal with, especially if it concerns young, female personal assistants and older, male service users. Hence, the concept of sexuality as a human right is more complicated when there are needs of assistance to actually exercise that right in practice. Conclusions: Sexual facilitation is a complex phenomenon made up of conceptualizations regarding how sexuality as a human need can be understood in relation to professional ethics. It also constitutes a field of antagonism where the rights and responsibilities of the concerned parties collide, i.e. sexual citizenship, worker’s rights and the bounds of welfare.
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| 26. |
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| 27. |
- Bahner, Julia
(författare)
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Så nära får ingen gå? En studie om sexualitet, funktionshinder och personlig assistans
- 2016
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The general aim of the thesis is to explore how sexuality is understood, described, responded to and organized in Swedish personal assistance services (PAS); that is services to people with impaired mobility. Previous research has demonstrated the struggle for disabled people to be acknowledged as sexual beings in a culture where dominant ideals of sexuality exclude disabled bodies. For assistance users who require sexual facilitation, i.e. personal assistance in order to manage their desired sexual conduct, this struggle can be even greater. LSS, the law governing PAS, is supposed to make it possible for assistance users to “live a life like others” under good living conditions and, furthermore, make it possible for them to participate on equal terms in society. However, sexuality is not mentioned in LSS, which leads to insecurity whether or not sexual facilitation is sanctioned. This insecurity is further deepened as the Work Environment Law states that the personal assistants’ working conditions must be both physically and psychologically adequate. Moreover, the issue of sexual facilitation is surrounded by taboo and ambiguity, and in my thesis I seek to analyze the logic behind these facts, as well as their consequences for concerned parties. The thesis is a compilation of a comprehensive summary (kappa), a binding text of six chapters (written in Swedish) and four related papers that have been previously published in international scientific journals. The empirical material consists of: 1) interviews with 10 personal assistance users, and also online observations of a virtual community’s discussion of disability-related issues, 2) interviews with 15 personal assistants, and also online observations of a virtual community’s discussions of personal assistants' working conditions, 3) focus group discussions with 10 service managers from different organizational settings, and 4) an analysis of texts about how sexual facilitation in PAS can be understood and handled, published by the Ethics Board’s Social Committee (part of the Swedish National Board of Health and Welfare) and The Swedish Federation of Mobility-Impaired Youth. The thesis thus explores how assistance users, assistants, managers and different stakeholders conceptualize sexual facilitation as a sexual practice, and furthermore, the relationship between the individual, social and societal levels. The core of the analysis is an understanding of bodily functioning, sexuality and professionalism as infused with normative ideas that influence how service is provided in practice. The results show that bodily ideals and what is considered “normal” ways of conducting sexual activity impede assistance users in expressing their sexual needs, especially if they need assistance to realize them. Personnel have great discretion when they decide who does what, for whom, how, and why (or why not), greatly influenced by their personal values about sexuality. The silence surrounding sexual facilitation on the policy level, combined with it being a taboo issue in society, contributes to the lack of attention in service provision. The study shows that sexual facilitation is a complex phenomenon and also constitutes a field of antagonism where the rights and responsibilities of concerned parties are at stake, i.e. sexual citizenship, worker’s rights and the bounds of welfare. Do service users have a right to sexual fulfillment, and if so, how is this to be catered to in practice, and if not, on what grounds can people in power positions define other’s sexual lives?
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| 28. |
- Bahner, Julia, et al.
(författare)
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The Devil Is in the Details
- 2023
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Ingår i: Archives of Sexual Behavior. - : Springer Science and Business Media LLC. - 0004-0002 .- 1573-2800. ; 52:8, s. 3259-3261
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Tidskriftsartikel (refereegranskat)
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| 29. |
- Bahner, Julia
(författare)
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The power of discretion and the discretion of power: personal assistants and sexual facilitation in disability services
- 2013
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Ingår i: Vulnerable Groups & Inclusion. - : Informa UK Limited. - 2000-8023. ; 4
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Tidskriftsartikel (refereegranskat)abstract
- Aim: The purpose of this article is to explore how personal assistants, working in state-funded services for mobility-disabled people in Sweden, perceive and experience their work, with special focus on sexual facilitation (assistance with sexual activities). Background: Personal assistance services are a legal right, aiming to give certain disabled people the possibility to live on equal terms in society with non-disabled citizens. The services are to be grounded on the principles of self-determination, autonomy, integrity, and user influence according to independent-living ideology. However, the legislation does not mention sexuality, and in addition, there are often no local policies; hence, it is unclear what service users can demand in terms of sexual facilitation, and on the assistants’ part, what is and what is not acceptable to assist with. Methods: The methods used to gather data were interviews with 15 personal assistants as well as observations in an online discussion forum for personal assistants. Findings: The analysis suggests that personal assistants may experience that there is a taboo against discussing sexual facilitation in the workplace. There are no predetermined policies, regulations, or ethical codes of conduct regarding sexual facilitation, and the personal assistants’ discretion is therefore strong. Different strategies for managing this discretion were identified, greatly influenced by personal values, as well as societal norms. Conclusion: The normative context of discretion is highly visible, suggesting the importance of uncovering the interplay between the power dimensions of sexuality, disability, gender, and professionalism.
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- Bahner, Julia, et al.
(författare)
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Who Counts as a Sexual Subject? The Impact of Ableist Rhetoric for People with Intellectual Disability in Sweden
- 2024
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Ingår i: Sexuality Research and Social Policy. - 1868-9884 .- 1553-6610. ; 21:1, s. 161-176
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: The ableist rhetoric around sexuality in disability services and beyond can hinder subjective sexual expression and have a powerful impact on health, self-esteem, and everyday life through internalized ableism, structural marginalization, and interpersonal discrimination. The aim of this study was to explore the ableist rhetoric of sexuality and its impact on sexual scripting for people with intellectual disability. Methods: A thematic analysis was carried out on data generated through ethnographic fieldwork at five sheltered accommodations and semi-structured interviews with ten individuals with intellectual disability. Results: The results show that people in Sweden with intellectual disability are desexualized within a moral order that is maintained in post-institutional social care. Through this moral order, which is deeply embedded in an ableist rhetoric about sexual relationships, sexual scripting for disabled people is constrained both inside post-institutional social care initiatives, and in the broader community of “ableist environments.” In response, disabled people employ various strategies of resistance. Conclusions: A rhetoric of positive sexuality should be a guiding principle for successfully supporting the development of sexual agency on each individual’s own term. Policy Implications: We conclude by encouraging the development of initiatives that will empower and support people with intellectual disability to learn about their sexual rights and to find solutions that allow for development of sexual agency and subjectivity.
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- Bahner, Julia
(författare)
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Whose sexuality is this anyway? The exclusion of sexuality in personal assistance services for disabled people.
- 2013
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Ingår i: DPR Conference, Greenwich, England. 9-11 april 2013..
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Silence is one way of executing power and can lead to as much exclusion as direct oppression. The silence surrounding disabled people’s sexuality has been widely acknowledged, however, it has not had any impact in Swedish disability policy. Personal assistance services is a state funded legal right aiming to promote the possibility to live “like anybody else” in society. However, the life domain of sexuality is not mentioned, making the inclusionary aim of personal assistance services simultaneously exclusionary of the idea of disabled people as sexual beings (like anybody else). This paper draws on results from a qualitative study where interviews were performed with mobility disabled personal assistance users and personal assistants, as well as observations on two online discussion forums aimed at respective group. Results indicate that there is a great taboo around discussing sexuality issues within personal assistance services, with the consequence that personal assistants are not adequately prepared to meet assistance user’s sexuality, creating obstacles for assistance users to express their sexuality in the desired way. At the same time, personal assistants feel excluded from “a normal worklife” if having to deal with sexuality issues. The paper will use an intersectional approach to discuss this exclusion of sexuality as a viable work task in relation to assistance users’ possibilities to live their (sexual) life “like anybody else” on these terms.
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| 34. |
- García-Santesmases, Andrea, et al.
(författare)
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A Very Public Private Matter : A Case Study of the Post-Institutional Control of Disabled Sexuality
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Ingår i: Sexuality Research and Social Policy. - 1868-9884.
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: This article explores how sexuality is conceptualised and managed in a Spanish residential care unit for recently injured people. The institution operates under the banner of independent living, a key belief of the international disabled people’s movement, which champions self-determination, autonomy, and control over their support. Methods: A focused ethnography was conducted between September 2021 and February 2022, with semi-structured interviews and participant observations with the residential care unit’s service users (n = 13), staff (n = 12), and managers (n = 7). Results: Managers and staff organise the support in ways that prevent service users’ autonomy, privacy, and intimacy, contrary to the independent living philosophy. Service users’ behaviour, relationships, and whereabouts are constantly monitored and controlled in a gendered, desexualising manner. When sexuality is discussed, it often concerns sexual assistance—a service offered by some organisations in Spain—effectively redirecting attention to a therapeutic approach and shifting focus away from institutional responsibilities towards an individual (male) issue. Conclusions: Critical disability studies and organisational theory inform an analysis that finds the institutional policy for managing sexuality is ‘strategic ignorance’: sexuality is simultaneously silenced and controlled in the name of professionalism. This post-institutional way of organising disability services is highly gendered and desexualising, resulting in ‘anti-independence’. Policy Implications: Residential care managers and staff should be trained to work ethically and professionally with sexual rights. Training should be based on the independent living philosophy, which empowers disabled people to take control over their lives.
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- Krantz, Oskar, et al.
(författare)
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The Personal is Political – And Then What? Ideology, Representation, and Legitimacy in a Swedish Disability Organisation
- 2023
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Ingår i: Scandinavian Journal of Disability Research. - : Stockholm University Press. - 1501-7419 .- 1745-3011. ; 25:1, s. 198-211
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Tidskriftsartikel (refereegranskat)abstract
- Background: Who can or cannot claim to represent other members within the disability rights movement has been discussed for decades, mainly concerning being disabled as an eligibility prerequisite. Aim(s): The aim is to analyse arguments concerning representational claims within a Swedish disability rights organisation (DHR, Disability Human Rights). Method: Every member of DHR was given the opportunity to answer three open-ended questions. Answers were subjected to a qualitative content analysis. Results: Two main dimensions of arguments were found. The ideological dimension legitimises representation through lived experience or a human rights approach. The pragmatic dimension legitimises representation through relational claims or organisational necessities. Further analysis revealed a paradox: When a representative is required to have a body with certain characteristics, other knowledge-related aspects risk devaluation. Conclusion(s): Paradoxically, the organisation has a goal of rendering impairment irrelevant in society, while rendering impairment a main issue when electing representatives.
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