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.

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.

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.

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.

Sverige framhålls ofta som ett föregångsland gällande personlig assistans (PA) och mänskliga rättigheter. Forskning visar dock att bedömningen av rätten till PA styrs av en medicinsk förståelse av funktionshinder och av ekonomiska snarare än funktionshinderpolitiska mål. Nedskärningar har medfört att antalet med statlig assistansersättning har minskat. Syftet med artikeln är att belysa de motstridiga upplevelserna av att ha PA i dagens Sverige. Det handlar om att å ena sidan kunna påverka sina livsvillkor, vara delaktig och utöva självbestämmande och å andra sidan om avsaknad av kontroll och makt över myndigheters beslut och omprövning av rätten till PA. Artikeln baseras på en deltagarbaserad forskningscirkel där bl.a. assistansanvändare och deras företrädare var medforskare. Resultatet belyser de komplexa sambanden mellan ett personligt utformat stöd och möjlighet att forma tillvaron. PA tillskrivs en avgörande och grundläggande betydelse för vardag, relationer, arbetsliv och hälsa. Kontakter med myndigheter väcker maktlöshet och bristande kontroll. Rädslan för att mista assistansen är påtaglig. Artikeln bidrar med kunskap om de sociala aspekterna av funktionshinder och om hur politiska reformer och nedskärningar gör avtryck i människors liv. Detta är angelägen kunskap då PA i en svensk kontext har blivit en fråga om behov snarare än mänskliga rättigheter.

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.