Narrowed Lives Vehmas, Simo; Mietola, Reetta
2021
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What is day-to-day life like for people with profound intellectual and multiple disabilities who live in group homes? How do they express their desires and wishes? How do care workers think about ...them and treat them? Do they have basic rights to activities most of us take for granted: activities like sociability, sexuality, and moral affirmation? Narrowed Lives is an illuminating portrait of what life is like in Finnish group homes where adults who have profound intellectual and multiple disabilities live their lives. Based upon ethnographic data, it documents how care workers strive to guarantee individuality and dignity against a backdrop of scarce resources and misguided policies. This book argues that the lives of people with profound disabilities need not be determined by their impairments. It calls for a re-evaluation of disability policy so that its underlying conviction of people with profound intellectual and multiple disabilities as equally valuable fellow humans would materialise in practice. This novel and accessible book combines ethnography and philosophy, and will be of interest to researchers and students in disability studies, special education and philosophy, as well as parents, professionals and policy makers. Endorsements from Readers For people with profound intellectual and multiple impairments, what is a good life? Who is responsible for trying to ensure that such a life is possible? This sobering, no-nonsense book about individual people who live in Finnish care homes is a timely and vital contribution to thinking about both the possibilities and the limitations of care, empathy and moral engagement. — Don Kulick, Distinguished University Professor of Anthropology, Uppsala University This important book boldly challenges many pervasive and harmful assumptions about people with profound disabilities. Through powerful illustrations of how the external world can constrain, limit, and deny the worth of disabled persons, the authors confront difficult but essential questions that must be asked in order to combat ableism and enable flourishing. By combining philosophical analysis with in-depth research into lived experience and relationships, this book is a call to critically reconsider how meaning is assigned, and how moral values are embodied in everyday practices. Narrowed Lives boldly asserts that the varied and complex lives of people with profound disabilities need not be narrow at all. — Licia Carlson, Professor of Philosophy, Providence College Provocative… this book provides answers to questions of the human that unconsciously abound in any conception of intellectual disability and, crucially, urges all researchers to consider the lives of people with intellectual disabilities. — Dan Goodley, Professor of Disability Studies and Education, University of Sheffield
This article analyses COVID-19 stories of disabled young people describing their everyday experiences during spring 2020. Data consist of 14 entries submitted to the Corona Competition organized by ...the Supporting Foundation for Children and Youth with Disabilities. We ask how disabled young people narrate their lockdown experience. Our analysis focuses on the one hand on the hegemonic lockdown narratives and subject positions constructed with these and on narration of disability on the other. The findings highlight the variations in the narratives in relation to experiences of (mis)fitting. In many of the texts, lockdown is presented as not leading to changes in the narrator’s sense of self or experience of disability. A few stories make visible how the lockdown has even diminished dominance of disability experiences in narrator’s life. However, for some of the narrators, the lockdown has led to deepening sense of misfitting and amplified their experience of disability.
This paper discusses youth and the significance of age in the lives of persons with profound intellectual and multiple disabilities. The analysis is based on an ethnographic research project that ...explores what makes a good life for this group of people. The findings indicate that whilst the meaning and significance of youth and age were discussed often by care workers and family members, age had very little significance in the lives of our research participants. Youth as a phase of life gets lost in the transition from children's services to adult services: age in the lives of persons with profound intellectual disabilities means merely a move from one service system to another. For the care workers, age provides a way to evaluate and criticize the service system and whether it caters for the individual needs of persons with profound intellectual disabilities. Keywords: age, good life, lifelong learning, profound intellectual disability, youth
Tarkastelemme artikkelissa kansalaisyhteiskunnassa toteutuvaa kansalaiskasvatusta ja tällaisessa toiminnassa nuorille mahdollistuvaa yhteiskunnallista osallistumista. Siirrämme katseen ...demokratiakasvatuksen ideaaleista ja tavoitteista tekemiseen ja toimintaan. Luemme kahta etnografista aineistoa Engin Isinin kansalaisuutta ja Gert Biestan kansalaiskasvatusta koskevien ajatusten kautta. Ensiksi kysymme, millaisia kansalaisuuden tekoja toteutuu projekteissa, joiden tavoitteena on nuorten yhteiskunnallisen osallistumisen vahvistaminen, ja mikä on näiden tekojen suhde kansalaisuuden käytäntöihin. Toiseksi kysymme, millä tavalla nuorten omat käsitykset, kokemukset ja kulttuurit näkyivät projekteissa. Aineistot tuotettiin 2018–2019 kahdessa järjestökentällä toteutetussa nuorten yhteiskunnallista vaikuttamista koskevassa projektissa, joissa työskenneltiin vähemmistöistä tulevien nuorten kanssa. Aineistot koostuvat tutkijoiden kirjoittamista kenttämuistiinpanoista ja kahdeksan projekteihin osallistuneen nuoren haastatteluista. Tulkitsemme, että toiminnan ja vaikuttamisen painottuminen projektien toimintakulttuurissa avaa projektien sisällä tilaa uudenlaiselle pohdinnalle, yhteistoiminnalle ja oppimiskokemuksille. Samalla tarkastelumme tekee näkyväksi toisin tekemisen vaativuuden: silloinkin kun tavoitteena on tukea nuorten toimintaa ja tuoda esiin heidän toimijuuttaan, säätelevät olemassa olevat kansalaisuuden käytännöt ja asemat kansalaisuuden tekoja. Inklusiivinen ja uudenlaista toimintaa mahdollistava kansalaiskasvatus edellyttää pohjakseen tarkastelua, jossa huomio kohdistuu toisaalta toimintaympäristöön ja tämän odottamiin kansalaisuuden käytäntöihin, ja toisaalta nuorten asemiin ja näistä aukeaviin osallistumisen mahdollisuuksiin.
The article explores educational paths of disabled young people in Finland. Our approach is life-historical: we are interested in how individual paths are formed by historically and culturally ...specific discourses and practices, and in the cultural understandings concerning disability and educability these carry. We also focus on questions of subjectivity and agency by asking how individuals positioned in these practices build an understanding of themselves, and of the possibilities and obstacles in their educational path. Two life-history interviews are analysed in detail. Our analysis highlights the persistence of stereotypical cultural narratives of disability in the life stories. In addition, it suggests that disability rights discourse has provided an important counter discourse for disabled young adults - a new way of conceptualizing self and one's educational path.
This article focuses on conceptions and representations of political participation. It is based on ethnographic research of a civics course that a multicultural NGO designed for young people from ...different racialized and ethnic minorities in Finland. We ask how political participation is conceptualized in such efforts to 'engage' or 'empower' 'marginalized' young people, what opportunities for political participation these practices present and how young people make use of them. We draw on new citizenship theory, which focuses on lived and acted citizenships and practices of mundane political agency. Our analytical focus is on performative acts and processes, and how these may transform conventions. Thus, we examine the political inherent in young people's actions and tackle the difficulty in recognizing young people's political activeness and agency. The young people on the civics course actively took the space provided for them and performed political participation. Adults often failed to recognize this, leading us to question what, in the adults' eyes, counts as acts and sites of political participation. We conclude that recognizing young people as political agents not only requires access and resources, but also negotiation of what is seen as political participation and what it can entail.
This paper discusses possibilities of designing ethical research practice in relation to people with profound intellectual and multiple disabilities (PIMD). We will argue that in the case of this ...group of people, research ethics is about ethically justifiable research aims, design, methods, and practices that are based on the recognition of their equal worth as humans. We argue that the turn to emancipatory methods in disability studies has effectively excluded persons with PIMD as they implicitly assume that research participants have the kind of cognitive and communicative capacities that persons with PIMD lack. Their exclusion from disability studies is further reinforced by the theoretical tradition of the field that has emphasised the material arrangements of society, as well as the ableist cultural ideologies as key factors contributing to disabled people's social exclusion. It is problematic to apply these approaches to individuals whose lives are marked by insurmountable impairment effects. Research ethics should take into account potential disparities of cognitive ability and power between researchers and research participants. Using an ongoing ethnographic study about the lives of persons with PIMD as an example, we describe in detail what positioning research participants as moral subjects could mean in practice.
In recent decades, disability policy programmes and conventions have been underlining how improving educational opportunities, especially for post-compulsory education, improve the employability and ...independence of disabled people, and thus their position in society and as citizens. However, little attention has been paid to actual educational practices and how they relate to these policy objectives. This article focuses on post-compulsory education for students with learning disabilities in Finland, more precisely on a vocational training programme called Preparatory Education for Work and Independent Living (PEWIL). In our ethnographic study of the programme, we scrutinise how daily educational practices govern citizenship for its students. We argue that even though these students are perceived as 'trainable' mainly in sheltered work and as only able to live in an institutionalised setting-thus reproducing their marginalisation-they have internalised the idea of a neoliberal labour market citizen with an emphasis on independence and employability.
Points of interest
The subject of this article is a vocational education and training programme for young people with learning disabilities. The aim of the programme is to give students skills for working and independent living in mainstream society.
We are interested in how citizenship is understood on the programme.
The first author participated in the everyday life of the programme and interviewed students.
We found that the programme prepares students to work in sheltered workshops and to live in group homes.
In interviews, the students said they want to have regular paid jobs and live independently in their own flats.
The article examines policies intended to promote the basic education of Roma and Traveller minorities in Finland, Sweden, and Norway by analysing key national Roma and Traveller policy (n = 5) and ...education policy documents (n = 3). Analysis shows how the Finnish, Swedish, and Norwegian Roma policies translate the general policy aims of improving the social positioning of people identifying as Roma consistently into policy measures responding to the special needs of Roma pupils. These policy measures are validated by problem representations regarding Roma parents and families. All the policies also problematise the relationship between Roma and Traveller cultures and schools. It is argued that the focuses of the current policy measures constrain opportunities for a change in terms of equality.
In this article our focus is on the persistent gendered divisions in educational routes of young people who choose a vocational path after compulsory education in Finland. We analyse how gendered ...subjectivities are constructed within the practices of educational and vocational guidance and within student cultures in the comprehensive school, as well as the way in which young people process understandings of themselves and their expectations during and after vocational education. In addition, we explore young people's ways to negotiate with disciplinary practices of the educational system. The paper draws on three ethnographic studies, and on feminist post-structural and materialist theories, intertwined with contextualised ethnographic perspectives. Our analysis reveals some patterns that might work as obstacles in the process towards reducing gender segregation in education and the labour market. We suggest that whilst gendered choices are sometimes taken for granted, gender dichotomy is often emphasised even if young people choose 'differently'.
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