Sharing the world: the researcher and the

S O N A L I S H A HNottingham University

A B S T R A C T This article explores the methodological opportunitiesand challenges I encountered, as a disabled researcher, while doingresearch on the educational experiences and career aspirations of agroup of young disabled people, still in full-time mainstream orspecial education. While the key barriers facing disabled researchersare recognized, they are challenged in this article and rather seen asopportunities. Further, they are diluted by the ontological privilegesthat are at the disposal of the disabled researcher, including the useof empathy, which provides a way of understanding other people’sexperiences in the context of both similarities and differencesbetween the researcher and the researched. This article focuses onthree methods of qualitative enquiry – namely, classroomobservation, forum theatre workshops and individual interviews. Itexplores how they were employed to ensure the voices of youngdisabled people were captured by the research process in ways thatreflect their views and recognize them as active social agents whoare able to make decisions about their own futures.

K E Y W O R D S : choices, disabled, education, empathy, forum theatre,researcher, schools

Introduction

The transition from school to work has always been a crucial time in the livesof young people. Students become increasingly aware of career opportunitiesand vocational pathways during their final years of senior school (Harvey,1984). How and when such transitions are made can have a major impact onthe young person’s sense of identity, the kind of person they want to be andtheir view of the world in general (Hodkinson et al., 1996).

Furthermore, the individual school, coupled with the legislative climate at

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the time, inevitably has significant influence on the young people’s transitions.Policy and practice, particularly within the school arena, can either supportyoung people’s subjective realities or constrain them. Warton and Cooney(1997) found, in their study, that students were unlikely to make optimalchoices as they lack sufficient and appropriate vocational information. Otherstudies (e.g. Ainley et al., 1994) have identified a range of external factors thatinfluence young people’s career-related choices within schools. These includetype of school, subject availability, timetabling restrictions, choices made byfriends and eligibility for entry to further education courses.

Where young people have disabilities and require additional support to theirpeers, the choices available to them, in relation to academic subjects and futurecareers, may be severely truncated. Despite the UK government’s commitmentto remove barriers to learning and increase staff training in mainstreamschools so disabled students can be educated alongside their non-disabledpeers (DFEE, 1997; DfES, 2004), not much progress is apparent at grassrootslevel. Research suggests disabled children have not been given the sameeducational opportunities, or been expected to achieve the same, as their non-disabled peers (Disability Rights Commission, 2000). According to officialstatistics from the Disability Rights Commission Educational Research Study(2002–03), many young disabled people in England and Wales feel marginal-ized and excluded at mainstream schools. Some young people are not able toaccess all school resources, and may have to forego certain activities andclasses. Furthermore, many feel they receive insufficient support in school andare discouraged from taking standard educational qualifications required foruniversity entrance (Martin, 2004).

While a number of studies have explored issues relating to post-schoolchoices of non-disabled young people (e.g. Hodkinson and Bloomer, 2003;Hodkinson et al., 1996; Whitely and Porter, 2004), there is a dearth of workabout the educational experiences of young disabled people and how theircareer ambitions are influenced. Further, there is growing recognition thatgaining the views of young people is crucial for understanding issues thataffect their lives (Morris, 1998b).

Therefore, one of the concerns of the project, on which this article is based,is how young disabled people, still in full-time education, perceive their schoolenvironment influences their subject selection, aspirations and careerdecisions. For the purposes of this work, the term ‘young disabled people’defines males and females, aged between 13 and 25, who are in full-timeeducation (in school or FE (Further Education) college) with physical impair-ments relating to mobility, dexterity and speech.

Young people are increasingly seen as active social agents, able to articulatetheir own experiences and express their views (O’Kane, 2000). This shift inthinking has brought, and will continue to bring, new methodological chal-lenges and opportunities for researchers (Christensen and James, 2000). Thisarticle focuses on such issues, as experienced by me, a disabled researcher

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doing qualitative research with young disabled people in educational settings.It explores how such research relationships can generate opportunities for theresearcher and researched in a number of areas including personal,professional and educational. One of the intended outcomes of the research isto give voice to young disabled people so they can inform policy and otherresearch about their futures. As Vernon (1997) suggests, liberation must bethe aim of all research with the oppressed.

Such research is particularly important now, as the UK government movesto implement new strategies for supporting the transition of young people intowork, and recognizes the importance of consulting them about what theywant, need and feel. The Code of Practice on the Identification and Assessmentof Special Educational Needs (DFEE, 2001) states that children have the rightto be heard and should be encouraged to participate in any decision-makingprocess to meet their special educational needs (Read and Clements, 2001).Therefore, designing research that is driven by their values and opinions seemsparticularly timely.

Research context

During the first half of 2004, seven educational institutions, within a city andcounty in the UK East Midlands, were approached to participate in an ESF(European Social Fund) qualitative study entitled ‘Future Selves: CareerChoices of Young Disabled People’. These included two special schools (onewith a sixth form unit), two mainstream secondary schools, two mainstreamsixth form schools and one specialist further education college.

I talked to 30 young disabled people, in special and mainstream education,in order to understand their educational experiences and how they makeparticular decisions about their occupational futures. The respondents wereidentified and invited, by teachers or Special Educational Needs Co-ordinators(SENCOs) of the individual school or college, to participate in the research.Recruitment of students was, on the whole, based on the research samplecriteria outlined in the research booklet which was sent to each school andcollege prior to the start of the fieldwork.

The selection of the sample was based on the following criteria: (1) youngpeople with different types of physical impairments including congenital,acquired and deteriorating conditions, and those who are non-verbal and usea communication device; (2) young people with a range of ages from 13 to 19in schools, and 16 to 25 if at college; (3) young people who attend specialschool and mainstream school; (4) young people who are either just choosingtheir GCSE or A-Level options, or choosing to apply for further or highereducation, or for jobs; (5) young people from a variety of different social class,ethnic and cultural backgrounds. The intended sample was of young peoplewho were expected to participate in vocational decision-making, focusing onsignificant points of choice. These points coincided with the following four age

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bands: 13–15, 15–16, 16–18, 19–25. This also corresponds to the points intime when the Connexions services (English government’s support service forall young people) are available to disabled people.

Method

The study adopted a range of methods broadly subsumed within a qualitativemethodology. Qualitative techniques provide those involved in the researchwith a more direct voice than is possible through participation in quantitativeresearch, such as experiments and surveys. Further, qualitative methods areparticularly suited to giving voice to the ‘underdog’ in society (Becker,1966/7): ‘people who are often the subject of research, yet whose voices arerarely heard.’ Becker argued that qualitative research challenges the ‘hier-archy of credibility’ which gives more credence to the experiences andopinions of those with greater power. In addition, the techniques typical ofqualitative research – interviews, observation, focus groups – enable access togroups such as disabled people and children, who are difficult to reach if quan-titative techniques are used. In relation to disabled people, Gerber (1990: 4)stated:

. . . People with disabilities were little more than objects of study. Their voice hadless legitimacy and less authority than that of the medical, rehabilitation,educational and welfare bureaucracy professionals who studied and worked withthem . . . But their conceptions of disability and disabled people give rise to thedevelopment of social policy that imposed, in the name of benign paternalism,bureaucratic manipulation and socio-economic dependence, and ultimately dead-end lives, on people with disabilities.

The combination of qualitative data generation methods, used in this study,included classroom observation, group discussions using forum theatre work-shops and individual interviews. These tools were used to generate youngdisabled people’s stories about their lives, allowing me to understand how theymake particular decisions about their occupational futures.

U S E O F E M PAT H YThe research process itself has unique effects and outcomes. It may be arguedthat the acquisition of rich quality data, during this study, was facilitated bythe fact that the interviewer and the participants came from the same minoritygroup – that is, both parties shared experiences of challenging oppression,disablement, special education and partial integration. It can be argued thatmy ontological position, as a disabled researcher, was key to the developmentof this research. Leicester (1999) and Oakley (1981) suggest that interview-ing individuals with similar experiences encourages the generation of richermaterial. Stanley and Wise (1993: 227–8) describe this experience of knowingas an ‘epistemological privilege’, with researchers having access to a priori




knowledge of their informants’ subjective realities by virtue of their sharedexperiences.

This shared culture and background, between myself and the target sample,was also helpful in accessing potential respondents and building rapport withthem, encouraging them to be more open. However, I was aware of thedangers of ‘overrapport’, and, taking Moser’s (1958: 187–8) advice, adopteda ‘pleasantness and a business-like nature’. Further, it generated positive role-modelling effects, encouraging the young disabled people to ask me questionsabout my own life, including whether I had encountered similar barriers tothem when growing up and the coping strategies I had used to overcome them.They were particularly enthusiastic to learn how I achieved my personal andprofessional choices in a society often perceived as working against the youngdisabled people. While I was aware that my responses might bias the interview,I was also conscious that I was asking a great deal from the young people, inthe way of their time, cooperation and confidences on some personal and diffi-cult matters in their lives, matters which they had every reason not to discloseto a stranger. Therefore, I attempted to answer their questions as honestly aspossible at the end of the interview.

However, no research is completely free of bias. It is recognized that thecloser our subject matter is to our own life the more we can expect our ownworldview to enter into and shape our work, to influence the questions we poseand the interpretations we generate from our findings. As Wheatley (1994:422) pointed out:

Ethnographic relations, practices and representations as well as the metaphors weuse to make sense of them are contextually contingent – their character is shapedby who we look at, from where we look, and why we are looking in the first place.

Moreover, it is argued that there is a thin dividing line between identificationwith one’s research subjects and their exploitation (Reay, 1996). Power-ladendifferences, in terms of race, gender or disablement, all have potential todisrupt any possibility of identification between the researcher and theresearched. Finch (1984) has pointed out how, if interviewers assumecommonalities and identification in the context of such differences, they areliable to reproduce structures of oppression and exploit research respondents.Thus reflexivity, the examination of how one’s own social reality influences thedata collected and picture of the social world produced (Vernon, 1997), is acritical exercise for those researching oppression.

Nevertheless, as a British Indian professional disabled woman in her early30s, only part of my life history resembled that of each respondent, so, as aresearcher, I could still retain a fair level of objectivity. As Bondi (2003)contends, this enables the interviewer to be emotionally present and reactiveto the interviewees’ responses while simultaneously staying in touch with, andreflecting on their own feelings. In this way, there is not a danger of the inter-viewer becoming unconsciously overwhelmed by the respondents’ stories,




reacting to, rather than reflecting on, what is going on, and blurring the inter-viewer/interviewee boundary.

Further, I kept in mind the danger of exposing my own vulnerability andassuming too much commonality of perspective with respondents, withoutlosing empathy. Indeed this is not an easy task, and could lead to me, theresearcher/interviewer, being over-critical of the researched. Further, it couldresult in the former’s exclusion in certain professional activities. This is illus-trated by the Tyson versus Washington rape trial, where women were morelikely to condemn Washington, the female victim, in order to distance them-selves from their own daily encounters of sexual harassment and victimization(Crenshaw, 1995). Prosecutors who handle sexual assault cases acknowledgethat they often exclude women as potential jurors because they tend toempathize least with the victim for fear they would reveal their own vulnera-bility.

Data collection

O B S E RVAT I O NClassroom observation, the first phase of the fieldwork, provided a means toexamine the ways in which disabled young people interact with differentenvironments, with their peers and adults in different contexts, and themeanings which they bring to such interactions. During each observation,within the seven educational settings, I, the researcher/observer, positionedmyself so I could clearly observe the teacher and students without beingintrusive. While the students were informed of my presence from theonset, I attempted to avoid significantly affecting their behaviour during thelesson.

The criticism that observation without participation can lead to the worstkind of subjectivism, where the observer’s surmises are substituted for thoseof the actor’s, is to some degree removed by subsequent informal access to indi-viduals (Blumer, 1971; Schutz, 1967). The degree of researcher influence alsobecomes less exaggerated, for ‘putting on a show’ becomes difficult to sustainfor individuals who tend to be more drawn in by the social reality that is moreimportant to them than the researcher’s presence (Becker, 1970).

Roberts et al. (1988) recommended using observation as a research toolprior to conducting interviews with respondents who require a breakdown ofquestions. One reason for this is to ensure the questions reflected the respon-dents’ concerns and assumptions, not those of the researcher. Furthermore,observation provides an indication of the level at which questions should bephrased, based on participants’ communication styles and how they interactedwith others. This would allow the researcher to determine the need to modifythe interview schedule to include specific subjects within the topic guide.Another important function of observation, especially for this research with asample of young people in an educational environment, was for me, the




researcher, to become familiar with the environment and also make myselfknown to potential participants.

The second and third phases of fieldwork – the forum theatre workshops andthe individual interviews – took place between May and July 2004, whensummer term ended for schools and colleges in the East Midlands county.

F O RU M T H E AT R E WO R K S H O P SThe second phase of the investigation was intended to generate dialogue andcreative activity between young disabled people about unsolved issues relatingto post-school pathways and factors influencing career-related decisions.Therefore, the forum theatre technique was employed. This method, developedby the Brazilian educator and activist Augusto Boal between the 1950s and1960s, seeks to transform theatre from traditional ‘monologue’ to creating a‘dialogue’ between audience and stage. Further, it works to encourageautonomous activity among the young disabled people, to set a process inmotion, to stimulate transformative creativity and to change spectators intoprotagonists. By transforming the spectator into the protagonist of theatricalaction, forum theatre encourages the young people to consider ways by whichthey can try and change society rather than being content with merely inter-preting it. Boal (2002: 225) argued that the goal is to open up a path to liber-ation, not drive people up a wall of resignation.

The fundamental position is not conflict resolution, but the ‘dynamization’of the community towards community enhancement (including social oreconomic positions, relationships and power structures, of emotional andpsychological strictures or internal conflicts, and role confusion). Springgay(2003) argued that inquiry as enactment is provocative; it invites the readeror viewer into an interplay of meaning-making, and it creates openingsthrough which excess, unravelling and absence seep through. According tohooks (1995), it demands an interrogation of our individual subjectivity andlocations. Furthermore, these kinds of approaches can effectively facilitate theinclusion and participation of young disabled people within the researchprocess (Fitzgerald et al., 2003a, 2003b).

According to O’Kane (2000: 40):

. . . we need to develop communication strategies which engage children, buildupon their own abilities and capabilities, and allow their agenda to take prece-dence.

Drama is just one of a number of innovative research techniques that areincreasingly been used to engage young people within the research process(see Christensen and James [2000]; Save the Children [1999]). However, it isstill perceived as a ‘new’ approach that has only been used by a small numberof researchers in a handful of fields. These include self-advocacy, emancipa-tory disability research, social justice (Barnardo’s, 2001; DIY TheatreCompany and Goodley, 1999) and physical education (Fitzgerald, 2004).




Researchers who choose to use drama usually do so within two key dimen-sions of the research process. First, some researchers use drama within theresearch process as a strategy for presenting data generated (Donmoyer andYennie-Donmoyer, 1995). It has been suggested that presenting research inthis way enables the audience to ‘. . . access and consider deeper levels ofmeaning’ (Lawrence and Mealman, 2000). Second, other researchers haveused drama as an interactive form of data generation (Barnardo’s, 2001;Norris, 2000; Taylor, 1998). In this context, the research process oftenbecomes much more than the generation of data and may also seek to chal-lenge oppressive aspects of our society (Boal, 1998).

The technique of forum theatre was used in this work to generate richdiscussion among young disabled people about experiences of oppressionwhen making transitions to adulthood, the choices open to this group ofpeople as they negotiated their way through school, and the barriers encoun-tered when striving to meet their career aspirations after school. This methodwas deemed suitable as it is flexible, democratic and emphasizes the skills ofthe group. Further, it encourages everyone to participate, explore their owncreativity, and be activated and inspired by the process (Clifford andHerrmann, 2002). From this context, ‘the research process becomes far morethan merely the generation of data to be analysed and reported’ (Fitzgerald,2004: 6).

For this phase of the research, I collaborated with a drama facilitator todevelop and plan a theatre workshop which included an overview of the keyissues to be explored in the drama session. These issues were also informed bythe wider aims of the research project. Each workshop included two briefintroduction and warm-up games, followed by a 20-minute scene acted out bythe drama facilitator and me. The participants were shown a short play involv-ing two characters. I played the role of a 15-year-old disabled student namedAngela who had just started at her local mainstream school, having previouslybeen at a residential special school for three years, and who was thinking abouther occupational future. The scene took place between Angela and her mother(played by the drama facilitator). It explored the issues surrounding Angela’sexperiences at school and home, and the barriers she encountered when tryingto make her own choices.

Through drama, students are encouraged to explore their ability toempathize, place themselves in other people’s shoes and search for practicaland emotional solutions. So, after watching an initial performance, the play isre-run and the young people are invited to suggest how the character (i.e.Angela) could have behaved and acted differently. In forum theatre, thestudents cannot advise the actors on what to say or do, but they can cross theperforming area, adopt a role and show the group exactly what they believedthe characters could do differently, influencing the outcome of the play.

Each theatre workshop was conducted in different educational environmentswith between 4 and 10 disabled students from various year groups. The




fieldwork team included two observers/facilitators whose roles includedsupporting the drama facilitator and me in the physical set-up and running ofthe workshops, being aware of the practical needs of the participants, andrecording the sessions by video as well as taking written notes. Video-recordingthe sessions enabled detailed and repeated ‘retrospective analysis’ (Edwards andWestgate, 1987) that would not be possible using other forms of recording. Datawere also generated after each workshop, focusing on the inputs, processes andoutcomes of the individual sessions. This included notes from informaldiscussions within the fieldwork team (involving researcher, drama facilitatorand two observers), my own reflexive notes and discussions with my colleagueswho supervised the running of the project. The discussions also had an evalu-ative component to identify the particular strengths and weaknesses of eachworkshop which were taken into account when delivering the next one. Forexample, two teaching assistants were present during the first workshop,although not requested by the research team or the young people. Theirpresence and participation in the games and forum were thought, by theresearch team, to weaken the workshop in terms of restraining the youngpeople from voicing their views and concerns. Therefore, in the following work-shops, teaching assistants were asked to leave the room before the workshopstarted. On one occasion, a young person requested for the teaching assistantto be in the same room, although not actively involved in the workshop.

Through providing a quality issue-based drama to students, the studyexplored their personal experiences and how they connect to other people’sexperiences. Boal (2002) argues that such a method of discovery breathes reallife into issues, to enliven and develop young people’s confidence andcommunication skills in presentation, negotiation and persuasion. Further, itcreates a safe environment into which young disabled people can bring differ-ent qualities and learn from each other, ask questions that they may havefound difficult to ask previously, or questions that may never have occurred tothem before. Assumptions and judgemental attitudes are challenged, creatingawareness of experiences of inclusion and exclusion that result from living inour society. In this way, the drama experience is educationally relevant andsupports a critical pedagogy (Giroux and Freire, 1993).

Another reason for using forum theatre in this way was to introduce theresearch to the young people before conducting the individual interviews.Also, by now, the young people were familiar with the researcher, associatingher with a positive experience. This is likely to generate richer data than if theywere being interviewed by a stranger.

The workshops gave the young people an opportunity to explore theresearch topic and express their own views and experiences in relation to it.Further, it encouraged the young disabled people to believe in their own contri-butions and those of others, and to develop self-confidence and self-esteem. Itis not about ‘egos’, it is about participation, expression and communication(Clifford and Herrmann, 2002). Therefore, at this stage, the young people are




already partly prepared for the individual interview that follows. Indeed, thereis a danger that this could over-sensitize the young people to the issues to beexplored in the interview, thereby creating rather than eliciting their views.However, there was always a minimum of three days between the workshopsand the interviews that we (two supervisors and I) believed was a sufficientlapse of time for the ‘over-sensitizing’ problem to be avoided.

I N T E RV I E W I N G A N D L I F E S TO R I E SThe third phase of fieldwork involved interviewing each of the young disabledpeople who participated in the theatre workshops. For this, semi-structuredinterviews were used, with prompts and follow-up questions to generateaccounts of the young disabled people’s career decisions in terms of why andwhere they originated, who influenced these accounts, the young people’sperceptions of how they would achieve their choices, what and who mightenable or constrain their transitions. These included factors like disablingbarriers (physical, social and attitudinal), impairment, ethnicity, friends,family background, educational opportunities, type of school and the expec-tations of significant others. Interviews were conducted within the youngperson’s educational environment, and typically lasted between 20 and 40minutes. With the permission of the young people and, where they were underthe age of 18, their parents, the interviews were recorded and fully tran-scribed. I assured the young people that their identity would be protected and,to make sure of this, they could choose pseudonyms for themselves. Whilesome selected these from the pre-prepared list I provided, other young peoplepreferred to invent alternative names of their own. Further, the young peoplewere told that the recordings would be labelled with their pseudonym, anddestroyed after being transcribed.

Although I carried out the interviews, a non-disabled support worker waspresent to facilitate access to fieldwork settings, ensure the data collection tools(i.e. mini disc recorder) were working, and assist with any problems thatemerged. She could also reflect on the visual dynamics that were shaping thediscussions between the interviewer and participant, and take additional fieldnotes when required. Her presence prevented me from becoming too immersedin the young people’s stories and participating in an intersubjective exchange,and thus encouraged me to take stock in a more detached way and retaincontact with an observer position. On the few occasions where I could notmake myself understood to the participant, the support worker would amplifymy voice and repeat the question for the participant, thus changing thedynamics between the three people and enriching the interview situation.However, from the outset it was agreed that the support worker should haveher own strategies to avoid being drawn into the formal discussion betweenthe researcher and the young person. She did this by positioning herself outof the young person’s visual range.

The stories told by the young disabled people were guided by the topic-setting questions so certain themes were explored with every participant.




However, each story also generated sub-themes that the individual participantchose to identify: the aspects of current context they highlighted as significantand the ambiguities and contradictions within and between accounts (Jones,1983). In this way, stories were both products and processes. As products,stories have the potential to capture the richness and ambiguity of social lifewhile simultaneously providing a sense of order and sequence. As processes,they are able to work as dynamic, sense-making and -giving processes duringwhich participants retrospectively construct a version of their story (Weick,1995). So, although sequence is important in providing the ‘sense’ of the story,only when added to emotion, subjectivity and meaning can a real story becreated. For example, a career story is different from a curriculum vitaebecause, although both contain the same facts, the latter lacks ‘the meaningof the career as lived’ (Cochran, 1990: 77). According to Bogdan (1974), thissort of autobiography can lead the researcher to a fuller understanding of thestages and critical periods in the processes of each participant’s development.It enables the researcher to look at the participants as if they have a past withsuccesses as well as failures, and a future with hopes and fears. Further,Bogdan argues, the life story technique allows the researcher to see an indi-vidual in relation to the history of their time, and how they are influenced bythe various religious, social, psychological and economic currents present intheir world. From this, the researcher is able to understand the choices,contingencies and options open to participants.

Conclusion

This article presents a rationale for using three methods of qualitative datageneration in research, led by a disabled researcher, with young disabledpeople in special and mainstream education who have not been typically givena voice within the research process. It discusses how the combination of forumtheatre workshops and individual interviews can be used to provide worth-while insights into young disabled people’s experiences and perceptions ofeducational inclusion, and the challenges and opportunities it produces inrelation to their future career pathways. Adopting such research strategies,which support concepts of empathy and identification, can help to reflect moreproductively on the richness of research relationships. This can be utilized toconduct effective social research.

This article explores the methodological privileges available to a disabledresearcher doing disability research. The personal ontological researchresources on hand to the researcher can be crucial for the generation of richquality data from young disabled people about their experiences of disablingpractice. Reinharz (1979) suggests human research should use the researcheras a research instrument with tools like personal experiences and imaginativeidentification, which have become recognized as valid sources of scholarlyknowledge (Riessman, 1994). Further, the disabled interviewer/researcher




tool can uncover the social realities of young disabled people, and, so doing,bring their voices into the future research and policy agenda.

As I noted previously, there were many similarities as well as differencesbetween my own experiences and those of the young people who participatedin the study. However, the differences were sufficient to ensure I retainedenough objectivity to be able to reflect on my own feelings while, at the sametime, being emotionally reactive to the young people’s responses. So, in thisway, the young people are not exploited but indeed empowered as they havean opportunity to share their experiences and concerns with an empatheticother. As Karl (1995) observes, a sense of empowerment comes from beingrespected and recognized as equal citizens with a contribution to make.

A C K N O W L E D G E M E N T

A special thanks to the research participants for sharing their views and experiences;my supervisors Robert Walker and Gillian Pascall for their constructive suggestions;the fieldwork team Nicky Wildin (the drama facilitator), Melissa Walker and NicolaKilvington (research facilitators).

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S O N A L I S H A H is a research fellow in the School of Sociology and Social Policy atNottingham University. Her research interests are connected with disabled youngpeople, education, career choices and transitional development.Address: School of Sociology and Social Policy, University of Nottingham, UniversityPark, Nottingham NG7 2RD, UK. [email: [email protected]]




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