Frågor kring breddad rekrytering och breddat deltagande utgör en del av den sociala dimensionen av högre utbildning och är ett prioriterat område för det europeiska samarbetet. 2017 års förslag om att ändra i högskolelagen och vidga lärosätenas uppdrag till att aktivt främja ett brett deltagande gav upphov till en debatt bland såväl politiker som företrädare för lärosäten, vilken synliggjorde flera utmaningar, förhoppningar och farhågor. Föreliggande reflektion tar avstamp i denna debatt och fördjupar sig i frågor kring breddat deltagande för studenter med funktionsnedsättning. Syftet med reflektionen är att diskutera och reflektera kring vad breddat deltagande för denna målgrupp innebär och vilka krav det ställer på resurser, tillgänglighet, bemötande och attityder samt på högskolepedagogisk kompetensutveckling, kunskap om funktionsnedsättning och funktionshinder samt inkluderande pedagogik. Utgångspunkten för reflektionen är svensk forskning och pågående utvecklingsarbete om breddat deltagande för studenter med funktionsnedsättning samt författarnas erfarenhetsbaserade kunskaper om högskolepedagogisk undervisning och kompetensutveckling.

This chapter aims to contribute with an understanding of how inaccessibility is legitimised and normalised in Swedish cities even when it is tangible and well-known to the authorities. Although independent and equal access is the overarching principle of policies, regulations and conventions, city centres are full of half-measures that only grant access if staff or passers-by are able to help out. A rhetorical analysis of interviews with professionals working with accessibility shows that these half-measures are legitimised as ‘just as good’ or ‘the only way’ to improve access. Accessibility measures are further described as ‘ugly’ or ‘unthinkable’ since they are perceived as challenging the purity of design or architectural style. What is considered accessible enough is constructed in the intersection of the conflicting norms, values and principles that socio-spatially order the city. This means that accessibility is outcompeted, or downplayed inaccessibility is reproduced, and half-measures are legitimised as the only possible option. The conflicts of interests, norms, values and regulations that cut through and circumscribe barrier removal need to be acknowledged, as well as the complexities of the professionals’ work. Everyday accessibility work is not only about technical skills, economic recourses or knowledge of disabling barriers, it is also about rhetorical skills and presenting convincing arguments.

Denna rapport är en beskrivning av Skåne läns regionala utvecklingsarbete inom verksamhetsrådet stöd till personer med funktionsnedsättning, ett utvecklingsarbete som kort kan beskrivas som en del av en landsomfattande satsning på stöd till evidensbaserad praktik inom socialtjänsten olika verksamhetsområden. Rapporten utgör även en skriftlig avrapportering av resultatet av den följeforskning som forskare Hanna Egard bedrivit sedan starten i augusti 2013 till och med december 2014. Under följeforskningens gång har det blivit tydligt att Skånes regionala utvecklingsarbete inom verksamhetsområdet stöd till personer med funktionsnedsättning i flera avseenden har varit ett ambitiöst projekt. Det har funnits en ambition att i flera avseenden integrera kunskap och erfarenheter från brukare, professionella och forskning samt verksamheter inom kommuner och Region Skåne. Alla delprojekt och andra arrangemang som bedrivits inom utvecklingsarbetet har rört sig inom ramen för de utvecklingsområden som anges i överenskommelsen mellan SKL och staten. Kontinuerligt arbete med tillgänglighet uppmärksammas som en viktig faktor för integrering av kunskap och erfarenhet från olika källor. Integreringen av olika verksamheter har varit en ambitionshöjning i förhållande till vad som föreskrivs i överenskommelserna mellan stat och kommun avseende evidensbaserad praktik inom socialtjänsten. Följeforskaren slår fast att det kan finnas argument för att även inkludera habilitering och hjälpmedel samt psykiatri i utvecklingsarbetets olika delar men att det ställer särskilda krav på tydlighet och rollfördelning.

Personal assistance is a user-directed service that was founded by a section of the disability movement, namely the American Independent Living movement, in the late 1960s. Today, the concept and ideology of personal assistance services (PAS) has spread worldwide, and constitutes a part of the support system for people with disabilities in many countries. The service differs from several other publicly financed services since users of personal assistance are given the opportunity to employ and supervise the staff providing the service. Organizing services in this way is presumed to enhance self-sufficiency of persons with disabilities and improve their chances of so-called independent living. This dissertation deals with personal assistance services (PAS) in the Swedish context. The aim is to illuminate and understand how personal assistance is carried out socially. To explore this, an ethnographic field study was conducted. The field study focused on face-to-face interaction of adult users with physical impairments and their personal assistants. Analysis and interpretation of the empirical material was primarily guided by Goffman’s dramaturgical perspective and concepts. Results show that the users and their personal assistants balance and shift between different modes of interacting with and approaching each other; by doing so they create and withhold definitions of the situations that are crucial for carrying out personal assistance services. “Preparedness” refers to their passivity, but also readiness, in situations when the users and personal assistants are idle. “Initiative” refers to their negotiations, but also agreements, concerning how the practical help of the personal assistance should be carried out. “Friendliness” refers to their small talk but also to the informal way of approaching each other.

Personlig assistans beskrivs ofta utifrån behov av praktiskt och aktivt stöd. För att beviljas insatsen krävs att den enskilde behöver hjälp med att exempelvis äta, klä på sig, kommunicera eller förflytta sig. I en tidsstudie genomförd av Assistanskommittén (2006) dras slutsatsen att personlig assistans till stora delar utförs på dagtid, vilket är den tid på dygnet då merparten av de aktiva stödinsatserna utförs. Detta kan tolkas som att de stunder då de personliga assistenterna ”finns tillhands” men är passiva inte är att betrakta som personlig assistans. Huruvida tiden mellan aktiva stö- dinsatser är personlig assistans är en fråga som har blivit högaktuell i och med Högsta Förvaltningsdomstolens dom där behov av stöd vid transport mellan fritidsaktiviteter inte ansågs utgöra grund för personlig assistans (HDF 2017 ref. 27). Domslutet blev starkt ifrågasatt och Regeringen lade fram ett lagförslag som tydliggör att väntetid och beredskap mellan aktiva stödinsatser räknas som personlig assistans. I detta kapitel visar jag att väntan och beredskap är grundläggande för att skapa det kontinuerliga, individuellt och personligt utformade stöd som personlig assistans ska vara. Kapitlet baseras på intervjuer med användare och deras personliga assistenter samt observationer av deras samspel i olika vardagssituationer. Av det empiriska materialet framkommer att per- sonlig assistans innebär ett skifte mellan aktiva hjälpinsatser och kortare eller längre stunder av ”stand-by”. Dessa stunder, som till en första anblick kan framstå som ineffektiv dötid, visar sig utgöra själva grunden för att skapa ett stöd vars innehåll och utformning styrs av användaren, möjliggör ett liv som andra och bidrar till självbestämmande. Vidare framkommer att den personliga assistentens närvaro kan vara nödvändig för att rädda användarens liv. Att vänta in och stundtals vara overksam ingår som en del av de personliga assistenternas arbetsuppgifter. Då arbete ofta associeras med att vara aktiv är passiviteten något som behöver förklaras. En jämfö- relse med andra arbeten tydliggör dock att overksamhet och väntan är en arbetsuppgift inom olika former av omsorg, service- och säkerhetsarbete och centralt för att anpassa stödet till individen och situationen. 17

Inom ramen för utredningen ”Stärkt rätt till personlig assistans för stöd vid egenvård, vid tillsyn samt för barn” (dir. 2020:3) har frågan om vad som skiljer hälso­ och sjukvård från omsorg aktualiserats. Syftet med denna rapport är att söka svar på om och i så fall hur det går  att särskilja olika åtgärder inom personlig assistans och precisera vad som är hälso-­  och sjukvård respektive omsorg. 

I det värsta scenariot utvecklar regionerna och kollektivtrafikföretagen en kollektivtrafik som stänger ute en stor grupp människor från att fritt kunna röra sig i samhället. Kollektivtrafikens huvudmän måste arbetar mot två mål samtidigt, skriver Hanna Egard och Kristofer Hansson vid Institutionen för socialt arbete, Malmö universitet.

This study examines disabled people’s everyday experience of social exclusion in relation to the rapid growth of digital technologies in everyday practices. It highlights the relationships between the growing theoretical apparatus on how society changes with new digital technologies, and theories about how this might lead to new disabling barriers in the everyday lives of disabled people. To better understand disabled people’s everyday experiences of social exclusion in the digital age, it brings together insights from two different fields: digital technology, mainly in digital social science and digital humanities; and disability studies, with a focus on the digital divide. The study draws on empirical observations, photographs and interviews with adults with various disabilities in Sweden, and analyses their everyday experiences with the help of a theoretical framework. 

This book explores the societal resistance to accessibility for persons with disabilities, and tries to set an example of how to study exclusion in a time when numerous policies promise inclusion. With 12 chapters organised in three parts, the book takes a comprehensive approach to accessibility, covering transport and communication, knowledge and education, law and organisation. Topics within a wide cross-disciplinary field are covered, including disability studies, social work, sociology, ethnology, social anthropology, and history. The main example is Sweden, with its implementation of the United Nations Convention on the Rights of Persons with Disabilities within the context of the Nordic welfare state. By identifying and discussing persistent social and cultural conditions as well as recurring situations and interactions that nurture resistance to advancing accessibility, despite various strong laws promoting it, the book’s conclusions are widely transferable. It argues for the value of alternating between methods, theoretical perspectives, and datasets to explore how new arenas, resources and technologies cause new accessibility concerns — and possibilities — for persons living with impairments. We need to be able to follow actors closely to uncover how they feel, act, and argue, but also to connect to wider discursive and institutional patterns and systems. This book will be of interest to scholars and students of disability studies, social work, sociology, ethnology, social anthropology, political science, and organisation studies.

Accessibility today has a contradictory character. One the one hand, people with disabilities are welcomed and included, with ambitious promises in policies and declarations. On the other hand, they are still excluded in everyday practices. This volume explores this contradiction in three areas: city and transport, knowledge and education, and law, institutions and history. Sweden is the primary case, but the ambition is wider. The compilation includes studies rooted in disability studies, social work and sociology, as well as ethnology, cultural geography and gender studies, political science and law, architecture, history, anthropology and linguistics. It involves a range of theories and methods, from participant observation to historical analyses using archival data, from critical disability theory to ethnomethodology. Since resistance to accessibility today takes various forms, and transforms as society itself changes, we need to equip ourselves with a corresponding plurality and dexterity. Researchers have to be on the move, like the United Nations itself, whose 2006 Convention on the Rights of Persons with Disabilities looks complete but requires constant monitoring to get nation-states to actualise its intentions. To study accessibility is to study exclusion and its constant drama, and in a democratic society this is highly relevant.

“Luckily I wasn’t re-examined this year” – Talking about living conditions with personal assistance

Sweden is often highlighted as a pioneering country in terms of personal assistance (PA) and human rights. However, research shows that the assessment of PA is guided by a medical understanding of disability and by austerity rather than by disability policy. Furthermore, the number of people with state-funded PA has decreased. The purpose of the article is to illuminate the contradictions that characterize life with PA in today’s Sweden. PA is about being able to influence one’s living conditions, to participate and to exercise self-determination, but also about lack of power and control since the right to PA can be withdrawn. The article draws on a participant-based research circle in which users and their representatives were among the participants. The results highlight the complex relationships between personal support and the opportunity to shape one’s existence. PA is considered crucial for everyday life, relationships, work and health. Contacts with the authorities evoke powerlessness, and the fear of losing the PA is palpable. The article contributes knowledge about the social aspects of disability and how reforms and cutbacks influence people’s lives. Such knowledge is essential as, in a Swedish context, PA has become a matter of need rather than of human rights.

Egard, Hanna et al. (2016) “An individual plan doesn’t construct participation”. The importance of communication, norms and relationships in the planning and implementation of support for persons with disabilities. The purpose of the study is to describe and understand what the participants of a research circle consider as important conditions for the participation of people with autism spectrum disorders in the planning and implementation of support. The material consists of documentation from a research circle in which staff discussed current research and development work with researchers and teachers in social work. Firstly, the result show that knowledge of the users way of com- munication, and a way of mapping and documenting that matches the users ability to com- municate, is considered as important conditions. A second condition for participation is the need for flexibility in terms of how the support is im- plemented. The support may need to be adapted to the type of relationship that the user and staff has, and the relationship might also have an impact on what kind of support that is requested. Thirdly, a norm-critical approach is an important prerequisite for participation since the objectives and content of the support should be based on the users wishes, not on staff or relatives’ standards. The conclusion is that documentation and planning does not in itself create participation. The prerequisites for participation are good communication, flexibility in terms of how the support is implemented, and a norm-critical approach.

Purpose: The aim of this study was to describe the everyday life experience of being an experienced active wheelchair user in Sweden. Method: A qualitative approach, based on interviews, was chosen. Eleven active wheelchair users were interviewed; the results analysed by means of a thematic content analysis. Results: Two main categories, each with two sub-categories emerged: (1) Challenges and changes (life-course perspective); and (2) the ambassador of differentness (activities and situations). The first sub-categories: (1a) the changing self (attitudes and values); and (1b) getting older (the meaning of experiences for future expectations). The second sub-categories: (2a) the responsible representative (having to represent a general image of disability); and (2b) other's attitudes (interactants' expressions of attitudes). Conclusions: An active wheelchair user can be seen as an open person, a representative of other wheelchair users. Interactants can actively engage in solving non-existing problems, or over-estimate actual problems, i.e. over-attentiveness. The personal experience can change over time, e.g. to care less about over-attentiveness, or to engage less in situations where over-attentiveness is likely to occur, i.e. impression management. Also, regular interactants can learn to see the wheelchair as something normal, sometimes even forgetting it.Implications for Rehabilitation To use an active wheelchair affects interaction in everyday life, rendering the user an open person, possible to address at will as a representative of other users as well. The experienced user of an active wheelchair is the expert concerning her/his present capacity in activities in everyday life; possible obstacles remain inert until defined otherwise by the user.

PURPOSE: Assistance from artefacts and humans are traditionally viewed as separate, and it is often up to the individual to try to combine the different kinds of assistance to suit their needs and preferences. The purpose of this study was to gain new insights into the co-existence of and synergies between artefactual and human assistance in the everyday lives of persons with physical and cognitive impairments, through exploring and analysing narratives of individuals who have first-hand knowledge and experience.

METHODS: Seven individuals took part in semi-structured interviews, which were then analysed with qualitative content analysis, grounded in cultural-historical activity theory.

RESULT: The participants were active agents with agendas, dreams, and needs, who shaped and made use of many different combinations of human and artefactual assistance, both formal and informal. They did this in ways that suited each person's preferences and circumstances and were often seen as complementary and synergistical. Flexible assistance could make limited energy resources last throughout the day, while less flexible or not individually tailored assistance was found to be less useful or appreciated. Assistance that was well integrated into a person's routines could become invisible and make the person feel independent despite severe impairments.

CONCLUSIONS: This study contributes new knowledge regarding how persons with disabilities utilize and mould artefactual and human assistance according to the activities they engage in as part of everyday life. When synergistical assistance works, different kinds of assistance flow seamlessly into one another and adjustment of plans and improvisations happen in the moment.