Abstract
Focus
The world of the Icelandic teenager with disabilities. His/her experiences, dreams and perceptions of what it means to become an adult with disabilities in the 21" century, in this small Nordic Welfare State. How social structure and the value base of different societies have impact on the meaning of adulthood, and how that is seen to relate to a teenager with disabilities in the mainstream.
The paper is based on one of the themes that is emerging from an extensive qualitative study currently in progress. The study itself is aimed at understanding the world of the disabled teenager (16-20 years old) in Iceland. Here I will draw upon in-depth interviews with 10 disabled teenagers in upper-secondary education from Reykjavik and from areas outside the capital.
The teenagers interviewed have a variety of disabilities, from mental retardation to physical and sensory disabilities. They represent the first generation of disabled people in Iceland that has grown up with laws and values emphasising normalisation and inclusion in society. Among them are young people who have attended both special schools and classes, and regular schools at the compulsory education stage. Upper-secondary education is currently being made more widely available to teenagers with disabilities both in law and in practice. Many of the interviewees are among the first disabled students in their upper-secondary colleges. Others have either failed to get in or have for other reasons joined the labour market after compulsory schooling.
In my paper I will share some of the theoretical considerations of the research and extract emerging themes on the dimensions of adulthood as perceived by the teenagers. I will explore how the teenagers believe their schooling and social life is preparing them for their future. Lastly I will try to look at how their dreams and needs relate to the current services and policy of the higher education and social service systems.
The paper is based on research that started in 1998 into the world of young disabled adults in Iceland who have grown up with the ideology of integration and inclusion as the law of the land. This is a qualitative study of the experience of being a young disabled adult (16-24 years old) in Icelandic upper-secondary schools, university or equivalent educational settings, in the job market and in society. The research is based on qualitative methods, largely influenced by grounded theory and hermeneutics and work within the interpretivist paradigm. The research focus is on situations and experiences for individuals who have impairments that lead to social discrimination; how they see themselves and how they are perceived by parents, friends and teachers.
The purpose of the whole study is:
1. to describe and explore how young disabled adults experience high school/grammar school, university or other educational centres. I am interested in establishing to what extent their feelings of satisfaction and well-being are related to:
2. to explore what these young disabled adults, their parents, teachers and friends, believe hinders them most in pursuing their learning, and what is most helpful.
3. to evaluate whether, and to what extent, different kinds of school-organisation, methods of teaching and support, help or hinder the 'full active learning membership' of impaired students. (Ferguson, Willis et. al. 1993)
4. to learn about the young adults' hopes and expectations for their future as adult members of society, and find out how they believe their education and their talents will serve them in their life and work as adults.
A. The purpose of this paper/presentation
Thirty six young disabled people were interviewed last spring and summer (1999) and their parents, some of their teachers and friends are currently being interviewed. This paper will pay particular attention to whether, how, and in which situations such young people see themselves, and are perceived by others (teachers, peers and parents), as fully participating 'active learning members' in the academic and social life of their schools and communities. Further it is explore what the young adults have in common across disabilities, and what may be specific due to the type of disability or social situation. Attention is given to how the upper-secondary schools attempt to meet the needs of disabled students, in terms of both learning support and social participation, and how, if at all, teaching and learning are planned to fit legal and practical criteria of social inclusion for a diversity of learners. Finally, attention is given to the young peoples' ideas about their adult life and dreams for the future.
Three questions will be put forward in this presentation:
Furthermore the paper will pay some attention to the impact of different "parenting careers "for lives of the young disabled adults. Here themes related to the interconnected pattern of parenting (the different "careers" of parenting disabled children) and the young adults view of their personal situation and future prospects will be explored. That analysis is in its early stages so conclusions will be tentative.
B. Perspective
The research is concerned with exploring the perspective and experience of the young adults in family, school and society. Particularly riche themes evolve from the young peoples perspectives on themselves in the future. Their dreams and hopes for adult live, work, home, friendships, love and sexuality provide much food for thought about assumptions too often wrongly assumed by significant persons in their own lives and by society.
It is of interest to understand what importance these people attach to inclusive schooling with regards to the young disabled adults themselves, to other students and teachers in the school, and to the school as a whole.
This approach is based on the notion that reality is always a process of social construction. Thus I work within the interpretivist paradigm, letting people tell their stories, and to understand how they act in response to the "meanings" that their situations have for them.
The research is also informed by that tradition of educational research which has to do with the ideas and execution of inclusive schooling.
My theoretical framework rests on research and theory which considers disability as a defined social institution, and on theory which discusses disability in terms of the sociology of deviance (Goffman 1963) and the sociology of acceptance (Bogdan and Taylor 1982, P.M. Ferguson 1987, Bogdan and Taylor 1989, Ferguson and Ferguson 1995). In the last few years, interpretative hermeneutics and post-modern theoretical perspectives of the construction, deconstruction and reconstruction of disability in society have put more emphasis on this approach, and made disability and the heterogeneity of people with disability more visible in society, and have given a voice to people with disability (See Foucault 1976, and Skrtic 1995). Nordic research into disability, youth and the welfare state has also inspired me and informed my work, as our cultures, schools and legal systems are similar. (Gustavsson 1999, Högspro, Kirkebæk et al. 1999.) Finally, the British school has also been an inspiration to me, even though I am not uncritical of "the social model of disabilities". It has politicised the concept of disability even further, focused and radicalised advocacy and self-advocacy of "the disabled people". (Oliver 1990, Shakespeare 1993, Barton 1999, Booth 1998)
Personally, I bring a number of perspectives to my research, and to this presentation. Not only have I been doing research on integration and later inclusion and inclusive practices for the past ten years, I have also been trying to learn more about how to prepare educators, student teachers and developmental therapists to work in inclusive schools and other public settings. Finally, I am a parent of a 20 year old son who has significant impairments (physical, sensory and cognitive), who has been among the pioneers of inclusion in Iceland, growing up, learning and playing almost always within regular settings both at home and in many countries around the world.
C. Modes of enquiry
Qualitative research methods are based on the view that reality is a product of society (see Berger and Luckmann 1967). This view acts as the foundation of my methods, along with the fact that the meaning of this reality needs to be agreed upon, interpreted and re-interpreted (Ferguson, Ferguson and Taylor 1992).
The method to be used in my proposed research project has three strands:
Qualitative research is, by its nature, descriptive and is based on peoples perception of reality. Analysis gives rise to generic themes which can form the basis of grounded theory, which grows out of the data which has been collected (Glaser and Strauss 1967). I am concerned with the 'meaning' and perspective of those on whom the research is carried out. This is a guiding principle in the research. I am concerned with the quality dimension of my enquiry and try to make sure that there is a degree of co-construction with me as researcher and participant in the process of gathering and interpreting the data. I am also very concerned with the use and relevance of my research for enlightenment, symbolic and instrumental utility, and for its emancipatory utility (Ferguson and Ferguson 1999).
D. Data Sources
Little research has so far been done on disability issues in Iceland. The main source of data are interviews taken in summer 1999 and 2000. The emphasis is on the interviews and their analysis, with other forms of evidence also taken into consideration. Over the past two years I have so far interviewed 36 young adults with a variety of severe impairments, one or both parents or support persons of 20 young adults (29 people in all), 12 teachers , and 12 friends. The interviews were in depth, semi-structured and lasted from 45 minutes to over 2 hours. They are being typed, and coded and analysed. (See Bogdan and Bicklen (1982), Taylor and Bogdan (1984) and others).
E. Preliminary Results
It is a little early in the research to report on the complete findings. Still the inquiry is opening up perspectives and experiences of people who have not had a voice in the Icelandic society before. That in itself is important. For example many of the young adults complain that not enough is expected of them at school, that upper secondary education and the supports available may hinder their social inclusion and restrict their educational development. I am also learning that type and to some extent severity of the impairment has less to do with the disabled participants view of themselves, what it means for them to be or become adult, their social experiences and future prospects, than generally expected. The type of schooling (integrated, segregated or inclusive), friends (non-disabled and disabled or no friends), and parents ways of dealing with the disability in the family, values, attitudes and interaction patterns within the family, and between parents and others (institutions, professionals and figments of the Icelandic welfare society) affect the outcomes for the young adults. This particularly affects their views of themselves, their future prospects and quality of life in regular- or segregated settings or in "no-man's land" belonging to neither. Parents perspective and attitude may even determine whether or not the young person perceives him/herself as becoming adult at all, and how others see them in that respect.
I am currently exploring how acts and attitudes that form patterns of the "career of parenting" an impaired child affect their adult children's situations and future. I am also learning more about what helps or hinders systemic changes in individual schools that are working on the rough path towards school inclusion.
F. Educational/Scientific importance of the study
The study adds to the understanding of Icelandic society, and how its welfare system, schools, and the laws on inclusion and normalisation work in practice. The study brings new stories and "new voices" to my society, its parents, teachers and politicians. It has a more theoretical aspect in exploring the interactive patterns of meanings and actions within the social web around each impaired young participant furthering, retarding or redirecting his or her life qualities.
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