Introduction
The method/ology marks the beginning of Section Two. My auto/ethnographic writing to (un)learn (Kleinsasser, 2000; Spry, 2001) continues throughout this section. Yet, the focus shifts, as we move from plotting the landscape of youth and disability, to focus upon the actions, theorisations and ideas of young disabled participants. The purpose of this chapter is to set out the ethnographic project which forms my fieldwork, of which there are three contexts:
1. A 10-week art project (10 x two-hour sessions) for seven young people involved in Explore, a charity running visual arts workshops for people with the label of intellectual impairment.
2. Three workshops with 20 young people (with physical, sensory and intellectual impairments) involved in a disabled people’s organisation’s (DPO’s) Youth Forum (YF). This resulted in an additional research relationship, outside of YF, with one member, Colin.
3. A three month ethnography with young disabled activists running an Independent Living Centre (ILC) in Reykjavik, Iceland.
I share with you why I refer to the former two contexts, time with Explore and YF, as The Best Ever Future Worlds Project, before detailing my fieldwork.
Futurology and the Best-Ever Future Worlds Project
I have periodically worried about the intersectionality of my writing. A year into my PhD and I had become used to seeing ‘where has youth gone from the discussion?’ scribbled on my work, when my supervisor hit me with the big one: ‘is this about disability
anymore?’ At home within CDS, this suggestion was frightening. Airing my worries to a colleague, she posed that maybe I was writing a series of stories about Mr Straight/Mr Able/Mr Big Society/Mr Normal, through the lenses of ‘youth’ and ‘disability’. This seemed appealing; I do, after all, address my thesis to Mr Reasonable. My thesis is about more than young disabled people. As reflected in my research questions I use ‘youth’ and
106 ‘disability’ as tools to critique the oppressive forces of neoliberal normativity. I remind you of these research questions now:
1. What dangers do young disabled people face if normative discourse remains unquestioned?
2. How can disability researchers share the stories of young disabled people in order to reposition them as active and politically resilient?
3. What can disability and the lived-experiences of young disabled people teach us about youth?
4. What can youth and the lived-experiences of young disabled people teach us about disability?
The above occurred as my first PhD year was ending, and I was keen to begin empirical work. I envisioned a year hanging out with disabled youth. As a 23-year-old, spending time with my peers under the guise of ‘work’ was appealing! However, critical of the penetrating gaze on disabled youth, I was conscious of reifying this gaze. Nevertheless, I had no desire to spend a year hanging out with Mr Reasonable. Although it does not end with it, my thesis is about youth and disability, and young disabled people were the people with whom I wished to spend time.
Thankfully, I had a ‘eureka!’ moment at a conference in summer 2012. By chance, I attended a presentation introducing the academic discipline of ‘futurology’ (Facer, 2011a). Futurology has its origins in war strategy and continues to be used in the
financial sector; concepts that sit uncomfortably with the politics of my thesis. However, Facer spoke of futurology’s use within education. I have argued from Chapter One onwards the dangers of viewing youth as incomplete-adults. ‘What are you going to be when you grow-up?’, often translating to mean, ‘What job will you have? How will you become a productive member of neoliberal society?’ Questions doused in ableist and normative connotations, and therefore often denied to disabled youth (explored in Chapter Seven). Educational futurologists make a similar critique. However, rather than dismissing talk of the future, they argue shifting from talk of individual futures, to encourage young people to think about societal and collective futures (Facer, 2011b; Hicks, 2002). As traced through the previous chapters, initially I saw only negative connotations of the continual future focus when thinking/talking about youth. However, as theoretically justified in Chapter Four, drawing on Deleuzoguattarian notions of becoming, I had begun to wonder whether the ‘inbetween’ status of youth could be played upon; the adulthood full stop of becoming-adult removed to consider how youth
107 become-in-the-world-together (Shildrick, 2009). This seemed to correspond to the
arguments of Facer (2011b) and others. I theorise around the notion of ‘becoming’ as it relates to the lives of my young disabled participants in analysis which follows.
Suddenly, futurology seemed relevant and I began exploring how I could utilise it in my research. This resulted in The Best-Ever Future Worlds Project, a utopian time-travelling project with young disabled people. My plan: to ask young disabled people to travel forward in time to a world set up just the way they want it. This would have dual
purpose. Okely (1975) tells us that ethnography should not just involve observation, but participation and an exchange of beliefs (Davis, 2000). Not wanting to just ‘hang around’ young disabled people, acting as another point of surveillance in their over-surveyed lives (Priestley, 2003), the creative methods employed in The Best Ever Future Worlds Project gave me the opportunity to offer something to participants; it meant we could together share ideas about how the world could be otherwise (Goltz, 2009). Secondly, as I continue to address throughout this chapter, the project aided me to answer my research questions. Research question one asks: what dangers do young disabled people face if we fail to question normative discourse, specifically in relation to youth and adulthood? Offering an alternative vision of the future cannot take place without a simultaneous critique of the present (Geoghegan, 1987; Gordon & Hollinger, 2002; Little, 2006; Sargisson, 2000). Engaging in utopian thinking, therefore, highlights the dangers of normativity. Research question two asks: how can disability researchers share the stories of young disabled people in order to reposition them as active and politically resilient? Utopias are inherently political (Sargisson, 2000). The Best-Ever Future Worlds Project therefore highlighted participant’s active political resilience. Research questions three and four are about otherwise thinking: what can disability and the lived-experiences of young disabled people teach us about youth, and what can youth and the lived-
experiences of young disabled people teach us about disability? Would youth and disability be thought differently in our future world?
After approaching various groups (the process of which is outlined later), I ran the two strands of the project, with Explore and YF, in the north of England between October 2011 and February 2012. I explain later the particular methods employed. From The Best-Ever Future Worlds Project with YF grew an additional research relationship with a young disabled activist, Colin. Interviews with Colin happened outside of YF, and
108 about youth and disability. The final research context, a three month ethnography with young disabled people running Reykjavik’s ILC, was not strictly part of The Best-Ever Future Worlds Project. Sargisson (2000) argues, however, that those involved in political movements are already engaged in utopian thinking. Therefore, I was interested in how the young people involved in the Independent Living Movement (ILM) in Iceland thought the world could function otherwise. Rather than employ creative methods as in the UK, however, in Iceland I relied heavily upon my research diary as a means of both generating and analysing data (Richardson, 1998). Again, this process is outlined further below.
Like Hughes et al. (2012, 315-316), I have justified my intersectional and
transdisciplinary approach to research: the “view [I] have taken is that any intellectual system or social theory is fair game when it comes to building a case for emancipation”. My method/ology is no different. An engagement in a variety of disciplines is vital to answer research question two: how can disability researchers share the stories of young disabled people in order to reposition them as active and politically resilient? Before detailing the methods, ethics and analysis of research, I first explain my methodological influences. Drawing upon research paradigms coming from CDS and the new sociology of childhood, I outline the relevance of feminist futurology to my research. I move to position my project as utopian, and justify my use of this term. Research is both a theoretical and practical endeavour (Biklen, 2004). I turn to outline how the critically young positionality theoretically built up over Section One influences research practice. From here I outline methods used in the three research contexts, before dealing with ethical issues, data and analysis. Finally, I outline how I will answer my research questions over Chapters Six to Eight.