Biographical research where “young people at risk” tell their story in some respect, has increased in quantity in the last two decades. Such social or educational research quite regularly pays attention to gender, ethnicity or social class. Disability is however more rarely dealt with. Maybe this has to do with the voices of disabled people not having been taken seriously in previous research as well as in society at large (cf. Munger & Mertens 2011; Rönnberg et al. 2011). Other possible reasons might be that such research is considered to involve specific methodological difficulties and is associated with rigorous ethical vetting. In this paper we explore methodological and ethical challenges and research strategies concerning interviewing young people with diverse dis/abilities. Conceptually the paper draws on arguments for involving young people in biographical research and inclusive disability research. Some arguments relate to the idea that (disadvantaged) young people should be given a voice and can contribute to knowledge about their experiences, viewpoints and circumstances (cf. Bynes & Rickards 2011; Conolly 2008). Other motives are, for example, that biographical methods may bring research, practice and policy into closer connection (Chamberlain 2002) and that multiple voices makes it possible to see difficulties not only as individual but also as structural (Atkinson 1997). In previous inclusive research focusing on methodological issues there is, however, an angle that is mainly – and paradoxically – disregarded, i.e. that young peoples’ opinions about their research participation seem to be neglected in favour of researchers’ understanding of methodological challenges and strategies. Hence, the paper aims to increase the knowledge of disabled young peoples’ views on their research participation: What are their considerations and motives for the research participation? What critical aspects of the research participation do they identify? What are their opinions on how researchers should encounter young people? Finally, the authors discuss the importance of considering respondents’ views on their research participation to decide on research strategies to encounter challenges when interviewing young people with varying dis/abilities.
The results are based on two interview studies involving 47 young people and young adults living in eight Swedish municipalities, strategically selected for context diversity. A common feature of all respondents is that they have some kind of disability (chiefly learning disabilities or attention-deficit/hyperactivity disorder, ADHD), are in transitional circumstances – from school to work, starting their adult life, etc. –, and lack a diploma from upper secondary school resulting in enhanced difficulties on the labour market, no entry to tertiary education, etc. One study involves 21 young adults (9 women and 12 men) 20-30 (on average 22) years old, registered at a public employment office as having a disability. The other study involves 28 (17 women and 11 men) final-year students (19-20 years old) at upper secondary special schools for people with intellectual disability and/or autism. The individual semi-structured interviews were conducted in the respondents’ hometown in 2011, took around one hour to carry out and were recorded (with a few exceptions). The study is part of a research project – Troublesome transitions: School-to-work transitions of young people at risk in a longitudinal perspective – funded by the Swedish Research Council.
When asked about their research participation the young adults pay great attention to informa-tion about the participation and the researchers’ responses when verbally giving their informed consent before the interview. They have various motives for their research participation, but their most common reason is however to make their voices heard to make an impact on research and, hopefully, contribute to improving the conditions for (disadvantaged) young people. Regarding the interview situation the young disabled respondents pinpoint aspects referring to the participant-researcher interaction, i.e. the importance of understanding each other and of creating a comfortable interview alliance. They value, for example, being under-stood and appreciated with respect to their ability, health or poor circumstances at the time of the interview. Sensible approaches to in biographical studies are important, not least when involving young people with varying dis/ablities. The authors argue that researchers are re-sponsible for creating good conditions, and the present study is intended to add to the knowl-edge of such challenges and research strategies. Even though our findings show that the re-spondents pay attention to the same critical methodological aspects that the authors as well as previous research observe, the respondents’ views of those aspects are important.
Atkinson, Dorothy (1997). An Auto/Biographical Approach to Learning Disability Research. Aldershot, Ashgate. Bynes, Linda J. & Rickards, Field W. (2011). Listening to the Voices of Students With Disabilities: Can Such Voices Inform Practice? Australasian Journal of Special Education, 35:1, 25-34. Chamberlayne, Prue (2002). Conclusions: social transition and biographical work. In: Chamberlayne, Prue; Rustin, Michael & Wengraf, Tom (eds). Biogra-phy and Social Exclusion in Europe. Experiences and life journeys. Bristol: Policy Press. Conolly, Anna (2009). Challenges of Generating Qualitative Data with Socially Excluded Young People. International Journal of Social Research Methodology, 11:2, 201-214. Munger, Kelly M & Mertens, Donna M. (2011). Conducting Research with the Disability Community: A Rights-Based Approach. New Directions for Adult and Continuing Education, 132: 23-33. Rönnberg, Jerker; Classon, Elisabeth, Danermark, Berth; Karlsson, Thomas (2011). Forskning om funktionsnedsättning och funktionshinder 2002-2010 (Research about impairment and disability 2002-2010). Swedish Council for Working Life and Social Research (in Swedish).
ECER , 2012.
ECER (European Conference of Educational Research) in Cadiz, Spain, September 2012