DSQ > Spring 2008, Volume 28, No.2

Disability Studies Quarterly Spring 2008, Volume 28, No.2 <www.dsq-sds.org> Copyright 2008 by the Society for Disability Studies

From Marginalization to Participation and Back Again: Including People with Learning Difficulties1 in Research — But for How Long? Department of Sociology & Anthropology School of the Environment & Society Swansea University

Abstract

This paper critically evaluates a qualitative research project investigating strategies for success in supported employment for people with learning difficulties. The project aimed to be participatory, involving people with learning difficulties at each stage of the research, including the appointment of a trainee researcher with learning difficulties. Consideration is made as to how truly participatory the project was, and for what length of time. The marginalized status of disabled people within such an academic endeavor, even one setting out to be participatory, is discussed and found to be problematic, as following the participation of the trainee researcher in this social research project he returned to his previous social status, reflecting the marginalization of disabled people within society more generally.

Keywords: Learning difficulties, supported employment, participatory research

Acknowledgements

I would like to thank the Joseph Rowntree Foundation for funding the research discussed in this paper; my colleagues on the project — Jeff Morgan, Dé Murphy, and Julie Shearn — and all those who participated in the project; DSQ co-editor Scot Danforth and the anonymous reviewers for their comments on an earlier draft; and Charlotte Davies, my colleague at Swansea University, who encouraged me to critically revisit the project.

Introduction

Participatory research is currently a key theme within social research, as seen at the UK Social Research Association's conference in December 2005. The conference theme — "Necessity or Nuisance? The role of non-researchers in research" — reflects a wider trend towards inclusivity and participation in social and healthcare policy and practice. Participatory research is perceived as a means to alter power relations within the research process and a step in the right direction towards the ultimate goal: emancipatory research where disabled people are in control of the whole research process (Oliver, 1992; Zarb, 1992; Ward, 1997; Chappell, 2000). A recent large survey of people with learning difficulties in England (reported in Emerson et al, 2005) commissioned by the UK Government's Department of Health, insisted that people with learning difficulties be included as members of the research team. Policies such as these derive from the campaigning work of disabled activists and researchers, who have revealed the power inequalities and potential for exploitation in social research contexts. This paper is a study of a study that evaluates a small-scale and qualitatively-focused participatory project in Wales, which involved people with learning difficulties as research subjects, but also, importantly, as researcher and advisors. The project explored strategies for success in supported employment. As I revisit the original study critically I will first give a brief outline of the research context, discuss in more detail the qualitative research methods used in order to demonstrate its participatory aspects, and finally discuss the limitations of such a participatory project which despite best intentions, led to only temporary participation and movement away from the margins of the world of social research for people with learning difficulties.

I investigate empowerment and marginalization through an analysis of the research project, which was itself an example of supported employment. The original research was reflexive, with those working on the project reflecting on our position as researchers and supported employee, employers and co-workers throughout the research process. We utilized fieldwork diaries and notes to inform our research and supplement the data obtained through the other methods of observation, interviews and focus groups. An interview with the trainee researcher helped the rest of the team to gain an insight into his experience as a supported employee. In these ways we set out from the beginning to consider "the ways in which the products of the research are affected by the personnel and process of doing research" (Davies, 2008: 4) and discussed these in the final report (Jones et al, 2002) in order to inform the findings and compare the team's experiences with those of other supported employees, employers and co-workers.

Background to the project

People with learning difficulties and work

When a call for proposal submissions came from The Joseph Rowntree Foundation2 in 1999 to conduct research on strategies for success in the workplace for disabled people, a colleague, Julia Shearn, and I at the Welsh Centre for Learning Disabilities in Cardiff, Wales, felt that it would be important to investigate particularly the experiences of people with learning difficulties as they have often been marginalized, even within the social model of disability (Chappell, 1998).

People with learning difficulties have traditionally been excluded from the world of paid work, but attempts over the last few decades at "normalization," "social role valorization" and "social inclusion" have included policy initiatives within the UK such as the All-Wales Strategy for the Development of Services for Mentally Handicapped People in 1983, The Employment and Training of People with Disabilities in 1990, and the New Deal for Disabled People in 1999. These policies have recognized the value of work for people with learning difficulties. The 1995 Disability Discrimination Act made it unlawful for employers to discriminate against disabled people, either in recruitment or employment. However, disabled people have often found it extremely difficult to get work, particularly those with learning difficulties: recent UK government estimates conclude that only 10% of people with learning difficulties are in paid employment (Department of Health, 2001: 7). Various support mechanisms are required to facilitate employment for people with learning difficulties, a category which covers a broad range of abilities and potential work skills.

Supported Employment

Whereas disabled people have traditionally been able to gain employment in sheltered workshops, there has been a shift away from such schemes in the past ten to fifteen years as there has been recognition that open employment can provide greater social integration and increased work opportunities (Pozner and Hammond, 1993). Disabled employees are provided with sufficient support to be able to carry out their jobs to the satisfaction of their employers, the support initially being provided by a specialist agency funded by the government.

Potential supported employees are usually self-referred to an agency, or referred by the Employment Service, a social worker or carer. The agency asks the potential employee what her/his interests are, assesses the individual's strengths and attempts to get a good job match for that person. A trial period of 'job tasters' usually follows, when the supported employee can experience different types of jobs to ascertain which might be suitable for long-term employment. When the type of job is narrowed down, a potential employer is found by looking at recruitment advertising or by enquiries from the agency. After negotiating the supported employment placement, a job coach/trainer learns the job and then usually trains the supported employee for several weeks until the employee is proficient enough to be left on her/his own, at which point the job trainer withdraws from the place of work but continues to monitor how things are going. The employer can refer to the agency if any problems arise, but the goal is for the supported employee to be integrated into the workforce and perform the job in the same way as any other member of staff. Recently, supported employment has been provided to people with severe learning difficulties and to people with multiple disabilities. Here, it is likely that the individual will need long-term support in the workplace. While the individual may never perform the job in the same way as her/his colleagues, the goal is to achieve as much social integration as possible and with as much continuing support from outside the workplace to the individual as necessary for the employer also to benefit from the arrangement.

There was considerable growth in supported employment provision for people with learning difficulties at the end of the last century (Beyer et al 1996). Supported employment is seen as a positive alternative to Adult Training Centres, achieving greater outcomes in over-all levels of time spent in meaningful activity and social interaction (Conley et al, 1989; Hill, 1987; Kilsby & Beyer, 1996). It is also assumed to enable people to access typical life experiences and be included more fully in the community (King's Fund, 1984). It is known that many people with learning difficulties place a great importance on attaining real jobs (Davies and Jenkins, 1993). Employment is important for their self worth, personal development and helps them avoid the sense of stigma from attending separate services for disabled people (King's Fund, 1984). However, there are a number of factors which undermine the value of supported employment. Firstly, there exists a significant level of job termination, which may lead to diminished self-esteem (Mank, 1994). Secondly, McCaughrin et al (1993) argue that loneliness may be a feature of some people's experiences in work. Although, by virtue of their physical presence, there is greater contact with 'able-bodied' people in supported employment settings (Kilsby and Beyer, 1996), the frequency of social rather than job related interactions is far from optimum (Beyer et al, 1995; Chadsey-Rusch & Gonzalez, 1989).

It was important that the research project uncover how people with learning difficulties may be helped to retain jobs, and to help them gain the maximum benefits from employment. Some previous research had focused attention on negative employment outcomes, for example, lack of social integration at work was linked to failure to acquire the social skills to cope with the demands of the workplace (Lignugaris-Kraft et al, 1988). Social integration was also circumscribed by the limited social interaction between co-workers and people with learning difficulties, for example, when the job trainer's role was seen as preventing full social interaction (Hagner, 1992). There was a dearth of research however that sought to uncover the factors that positively influence people's experience of employment and the way employers and colleagues help achieve a successful work experience. The strategies that people with learning difficulties themselves employ to succeed in paid work had been entirely neglected in the existing research. It was thus the research goal to attempt to fill this gap in the research on supported employment for people with learning difficulties. The research explored how factors, such as the agencies, employers, colleagues and the supported employees themselves could positively influence the experience of supported employment for people with learning difficulties, and this necessitated a qualitative approach.

Participatory Research

There is a great deal of research literature examining the relationship between professional researchers and people with learning difficulties. Traditionally research has been on people, with the researcher deciding the research methods to be used and the questions to be asked as well as analyzing the data and finally writing it up. This has resulted in those who are researched being rendered passive in this process. Increasingly, this type of research has been seen as disempowering and not representative of disabled people's experiences and knowledge (Nihira, Ledland & Lambert, 1993). Research by non-disabled people on disabled people has also been criticized for its bias toward the desires and agendas of the non-disabled researcher. It has been argued that research on people with learning difficulties by non learning disabled researchers runs the risk of invalidating its findings, suggesting that people with learning difficulties in this situation give answers which they feel are required of them rather than their true views (McCaughrin et al, 1993).

There has been a call for the adoption of research strategies that are empowering, seeking positive individual change through participation. The emphasis of participatory research is research carried out with people rather than research on people. A definition of participatory research includes the following characteristics:

  1. Research should be used as a tool for improving the lives of disabled people.
  2. There should be greater opportunities for disabled people to be researchers.
  3. Researchers must adopt a more reflexive stance regarding their work.
  4. The democratic organizations of disabled people should act as commissioners and funders of research.
  5. Researchers should be accountable to the democratic organizations of disabled people.
(Chappell, 2000: 38)

Cocks and Cockram (1995) suggest the following three processes as being essential to participatory research:

  1. The research problem may be identified by disabled people or non-disabled researchers, who then bring it to the attention of the constituency of disabled people.
  2. Disabled people and researchers work together to achieve a collective analysis of the research problem.
  3. Alliances are formed between disabled people, researchers and other experts, although these alliances must be under the control and primarily in the interests of disabled people.

An intrinsic aim of this project was to conduct a genuinely 'participatory' research project. The study attempted to ensure this by the following means:

  1. The research problem was identified by non learning disabled researchers, and was then brought to the attention of People First Wales, a self-advocacy group comprising people with learning difficulties. Members were asked how important they felt the topic was and whether it was worth pursuing. Volunteers from People First Wales agreed to act as a Consultation Group for the project, the working of which is further discussed below.
  2. The non learning disabled researchers aimed to work with people with learning difficulties to achieve a collective analysis of the research problem.
  3. A trainee researcher with learning difficulties was appointed to the project.

The researchers thus adopted research methods which generated a working alliance between the researchers and the researched. In this collaborative model people with learning difficulties are viewed as research partners or colleagues (Williams, 1999, Knox, Mok & Paramenter, 2000).

However, whilst the project aimed to be participatory, this paper argues that real participation was only fleeting, especially for the trainee researcher with learning difficulties.

Conducting the research

Underpinning this study was the need for research on supported employment which involved detailed studies of the experiences of people with learning difficulties, their colleagues, employers and job coaches. Of course the definition of what constitutes 'learning difficulties' is contestable and problematic (Davies, 1998), but in this project we did not attempt categorization. Because participants had been referred and accepted by supported employment agencies as suitable for supported employment for people with learning difficulties and were thus 'labelled' as having learning difficulties (Becker, 1996), we included them in our research.

Our qualitative approach included using observation in the workplace and in-depth interviews with the persons in supported employment. Further interviews with their job coaches and employers helped to build five detailed case studies which explored from various perspectives the experiences of a small number of people with learning difficulties in their jobs. Two additional focus groups with people in supported employment and another focus group with job coaches provided a wider sample. We were conscious of the different cultures of the individual workplaces and how this might impact on the person's experiences (Hagner, 1992; Schein, 1990). Throughout the research process we were reflexive about our impact on the data collected and the subsequent findings (Okely & Callaway, 1992; Davies, 2008). Additionally, since the research investigated strategies for successful employment by people with learning difficulties and how employers and colleagues can create a non-disabling environment, we were reflexive in terms of how the research team experienced their collaboration.

We believed that it was important to reflect on the experiences of the trainee researcher (as an employee and colleague) and the more experienced researchers (as employers and colleagues) in the research and included this in our findings. We were able to compare the team's experiences with those of the other participants. For example, the trainee researcher was positive about his role as a supported employee, recording the following in his field notes:

I felt like one of the staff here, because people here treated me like one…. If I had started this job and someone was bossing me about I'd think 'I can't stand them' and it would be hard to come to work because people were treating me bad. I didn't really know I was in supported employment, I just thought people were friendly and said I could ask them for help if I needed it…. I get on with you because you don't speak to me like a child. If you was talking to me like a child I don't think I could stand the job.

These comments highlight some of the aspects of his position that led to his job being successful, and echoed the Consultation Group's view that to be successful in work it is necessary to be treated with respect and as an adult (Jones et al, 2002: 8, 35).

Ethical considerations

Ethical considerations are a vital issue in any research project, and when doing research with people with learning difficulties these considerations can be problematic. For example, the issue of informed consent can be complex.

In the light of this issue, two local supported employment agencies were asked to identify those they considered to be "successful" in their jobs, and to explain to them the purpose of this research. If these successful employees agreed to take part, this was followed up by a telephone call from the researcher and a letter confirming what had been spoken about. Where a person was living with a family or carer, they were also informed about the case study participant's role in the project. Aware of the importance of continued consent, we checked throughout the research that participants were willing to continue with the research as it progressed (Ward, 1997).

Traditionally in social research, less powerful groups within society have been the subjects of study as they are considered to have special social problems. This situation has lead to an unbalanced power relationship between the researchers and the researched. Financial remuneration can be one way of recognising and beginning to equalize such power relations (Thompson, 1996). In this research project a payment of £10 per interview (£30 in total) was given to those people with learning difficulties who had agreed to be our case study participants and £15 to those taking part in a focus group.

To maintain confidentiality and the anonymity of the participants, pseudonyms were used throughout dissemination.

In our attempt to redress the inequitable power relationship in the research process (Ward and Flynn, 1994), we gave information about ourselves to each case-study and focus group participant (Oakley, 1981). As previously stated, we also employed a person with learning difficulties as an integral part of the research team (Heal and Sigelman, 1995) and we checked on the participants' understanding of the research (Malin, 1980) as part of the analysis.

We were sensitive to the possibility of stigmatizing the supported employees by focusing our attention on them in the workplace, and every effort was made to avoid this by our inclusion of co-workers' perspectives on their own employment experiences. This inclusion of multiple perspectives spread attention within the workplace across supported workers and co-workers and also helped to contextualize the experiences of those in supported employment. Throughout the data collection period we emphasized to all involved in our study that they were assisting us, rather than only being subjects of our research.

The Consultation Group

Prior to applying for funding, an initial meeting was held with the People First Wales Executive Committee, where the aims and focus of the research project were presented. Members agreed that it would be worth researching supported employment for people with learning difficulties, and also said that they were willing to help us with our proposal. From a discussion at this meeting some definitions of what 'success' in employment meant to these people with learning difficulties were identified. Those present were also asked to nominate a group of five individuals to act as members of the Consultation Group on this study should funding be awarded, and four men and one woman subsequently volunteered once confirmation of funding had been received.

The researchers met with the Consultation Group prior to the collection of any data to further clarify definitions of success and some of the strategies for success in the workplace known to the group. These discussions formed the basis of the focus groups discussions. At this meeting the Consultation Group also developed a job description and person specification for the trainee researcher post and one of its members agreed to sit on the interview panel.

The post for Trainee Researcher was advertized in People First Wales' newsletter Talk Back (this newsletter is sent to all self-advocacy groups in Wales) and in Llais (Voice) , the newsletter of SCOVO (the Standing Conference of Voluntary Organisations for people with a learning disability in Wales). Copies were also sent to supported employment agencies in south Wales. The Welsh Centre for Learning Disabilities was, at the time, based at the University Of Wales College Of Medicine, Cardiff. The College's Personnel Department wanted the standard application form and accompanying information to be sent by those applying, as they were developed to ensure equal opportunities in recruitment procedures. Ironically, these would have excluded some people with learning difficulties from applying because of the complex nature of the form and the accompanying information supplied about the College's management structure. However, after some negotiation, it was agreed that applications could be sent in writing or on a cassette tape, and of the six applications received, two were by the latter method. The trainee researcher was selected by interview, and the interview panel consisted of the two grant holders, a member of the Consultation Group and a representative from the Personnel Department of the College of Medicine.

When the interviewees arrived for their interview (some with their support worker) they were greeted by the Research Assistant who had started work on the project four weeks previously to cover for the maternity leave of one of the grant-holders. As well as being given some refreshments, they were shown a Polaroid photograph of the smiling interview panel that had been taken earlier that morning. The researcher explained who each person on the panel was and the kinds of questions they would ask. Then they were asked if a photo could be taken of them, so that the people on the interview panel could remember who was who when they were making their decision. The Consultation Group member on the interview panel had been trained by the researchers in recruitment interview techniques and was given guidance on what to expect on the day. He had also helped to formulate the interview questions. The panel used pictures and a rating scale to score each of the interviewees on the criteria that had been previously decided on, with one of the researchers assisting the Consultation Group representative. When the time came to make the decision, the shortlist was narrowed down to two of the interviewees, and there was a lot of discussion around the merits of these two individuals. In the end, the panel was persuaded by the Consultation Group member, who had the final deciding vote, and Jeff Morgan was appointed.

A second meeting with the Consultation Group was held to discuss the findings from the focus groups and issues that had been raised in the first set of interviews. The researchers asked the advice of the group on how those people being interviewed could be encouraged to talk more. They suggested we offer some information about ourselves without waiting to be asked, to be friendly and to smile a lot, and also to wait a while to give people a chance to think of their answers. The trainee researcher also fed back to the group his experience so far of working on the project. At the third meeting Jeff reported to the group on what had been learned from the interviews with the five case study participants on how to be successful in your job. He summed up each finding with the answer to a question he had formulated himself: "What advice would you give to someone who wanted to be successful in their job placement?"

At this meeting it was also agreed to write a short bulletin for each of the local People First newsletters acknowledging the work done by their members on the Consultation Group. The Group was also asked if the report given by Jeff would be suitable as a presentation at the People First Wales annual conference. This presentation formed the basis of the associated Plain Facts3 publication on this research. The group agreed, but suggested that photos or drawings should be included as overhead projector images to make the presentation more accessible, a suggestion that was taken up. The meeting also agreed that the presentation at the conference should be done by Jeff, with the Group itself also present on the stage, and a researcher supporting with the overhead slides and projector.

The Trainee Researcher

In his first week on the project, the trainee researcher was taken through his contract by a staff member from Personnel, and his working hours were agreed with advice from a supported agency job coach. It was clear that in order not to jeopardize his Disability Living Allowance benefits, he would only be able to work one day per week, and his earnings would not be able to exceed £20 per week. He received training in the use of the photocopier, tape-recorder and computer (he already had basic computer skills). As part of his training in interview techniques, one of the researchers adapted the qualitative research pointers that she herself had received on a training course by the Social Research Association, and a few of these were focused on each week. In this time also, with advice from one of the researchers, Jeff drew up a list of six questions and he interviewed a cross-section of the staff (eight in all) at the Welsh Centre for Learning Disabilities Applied Research Unit. In this way he was able to put the rules into practice and become aware of when to use prompts and when to remain quiet. The remainder of Jeff's training was on the job.

Jeff attended the first focus group with job coaches and observed how it worked. In the second and third focus group with people with learning difficulties, he asked what were deemed as some "easy questions" and one of the "harder questions" (Krueger, 1998). He also chatted informally with these groups while another researcher organized the refreshments.

With the five case study participants, he attended the first interview and observed, while on the second occasion he was accompanied to the person's house, and the researcher remained outside or in the next room while he conducted the interview on his own.

Jeff presented the findings of the case studies to the Consultation Group and at two conferences, and he was fully involved in drafting the completed reports. In this way his experience of the research dissemination process was an important part of his training as a researcher.

The Focus Groups

Focus groups are a form of group interviewing, but there are important distinctions between the two methods of data collection. Group interviewing involves interviewing a number of people at the same time, with the researcher asking specific questions and the participants responding. Focus groups differ in that the researcher acts as a facilitator, who uses open questions to begin the discussion between the participants, keeps the discussion on track, and moves it on with further open-ended questions should it get stuck (Gibbs, 1997). Focus groups seemed a useful tool to achieve as wide an over-view as possible within the parameters of the project's remit.

Two focus groups with people with learning difficulties in supported employment and one focus group comprising job coaches were held in order to identify strategies for success which were then used to inform the participant observation and interviews. The focus groups also elicited the views of a wider range of people to complement the detailed case studies. They took place in informal and comfortable surroundings, facilitated by one grant holder, the Research Assistant, and the trainee researcher. The first focus group was with seven job coaches drawn from two supported employment agencies, one based in a large town, the other covering a wide area of the south Wales valleys. The questions they were asked centered on their views of what makes work successful from the perspective of the person in the job, for the employer and for the agency involved.

The second and third focus groups were held with people with learning difficulties who were in supported employment. When recruiting for the focus groups was first considered, a letter was drafted with text on the left and drawings on the right of the page, but Jeff thought the drawings were pointless unless they were self-explanatory, and it was difficult to achieve that, so they were omitted (this was similar to the feedback received from the supported employment agencies). The first focus group had five participants, and the second had six. Each had only one woman, and neither included any people from ethnic minorities, but this reflected the proportion of men and women and scarcity of people from ethnic minorities on the books of the agencies involved. The focus group participants' ages ranged from early twenties to late forties. Out of the eleven participants five were cleaners, two worked in kitchens, mainly collecting and washing dishes (one person also prepared the puddings), one worked in a shop, one was a senior supermarket trolley retriever, one drove a forklift truck in a warehouse and one was a security guard.

Following the introductions, Jeff said a bit about himself as a person with learning difficulties in supported employment. Next, one of the researchers asked the introductory questions (what's your name, where do you live etc.), then Jeff asked five questions relating to the focus group members' jobs, using prompts where they were needed (what job do you do?, how long have you been doing it?, what things do you do at work?). He also asked one of the "harder" questions relating to their bosses or supervisors (what is your boss or supervisor like?, are they fair?, do they help you?). With refreshments at the start, and another short break in the middle, the focus groups each lasted two hours.

Central to the workings of the focus group is the interaction between the group based on topics for discussion that are given by the researcher (Morgan, 1998). In the instances where focus groups were held with people with learning difficulties, often, but not all the time, what took place was more akin to a group interview. As Jeff noted in his field diary, the focus groups with supported employees reminded him of other group situations that he had encountered in his self-advocacy role where some people found it more difficult to contribute unless particularly encouraged:

It depends on the person, but some people will need more hints, but some won't. Like the people on the People First committee, out of twelve, four or five will talk. But when you go around the others and ask them what they think they will talk then.

The Interviews

Informed by the data collected from the focus groups and bearing in mind the self-advocates' definitions of success, the researchers and trainee researcher designed qualitative semi-structured interview schedules. Interviews were then conducted with the five people in supported employment in the case studies, their job coaches and their employers to obtain data on their perspectives of work, how supported employees have succeeded in the workplace and how they have been assisted by co-workers and employers.

Interviews took place on three occasions with the people with learning difficulties, allowing a relationship to develop with research participants and to allow for developments over time to be included. This also gave the opportunity for Jeff to test out his research skills, when he interviewed the participants on his own utilizing an adapted semi-structured interview schedule to make it more structured at his request: "I need to have the questions in front of me so I'll know what to say."

Between the second and third case study interview, an interview was conducted with a representative, either a manager or supervisor, of participants' employers. This allowed the researchers to explore any issues brought up by the employer with the supported employee in the third interview.

The Case Studies

The five case study participants were identified for the research by the two Supported Employment Agencies involved in the focus group discussions. They were suggested because each had been with her/his employer for several years, indicating success in the agencies' view. The agencies also thought that their employers would co-operate and grant permission for the site visit, an important practical consideration. Three men and two women were selected with an age range of between thirty and thirty-nine.

Each person was visited in her/his home three times and the first interview was carried out by one of the researchers with the questions revolving around the person's home and family life, schooling, interests and hobbies. The second, more structured interview was based around the participants' work and feelings about 'success' and was carried out by the trainee researcher. The third interview was again carried out by one of the researchers, who sought to fill in any gaps that had become apparent on reading the transcripts of the first two interviews. The interviewees were paid £10 for each interview, the average length being 20 - 40 minutes, though time spent in the home usually ran to an hour.

Observation

One visit was made to the workplace of each case study participant, during which time observations of work and social environments, such as the staff canteen or staff room, were completed, using detailed fieldwork notes. In addition, employees (sometimes including the case study participant), were asked about their employment experiences. In all instances, except in one case, where the supported employee had told his colleagues that he was the focus of research, employees were unaware that the research was being conducted around supported employment, as the questions they were asked related to their own work experiences. Jeff's observation skills were apparent from his field notes after a visit to one of the supported employee's homes in which he noted "she had tablets all over the table" and he expressed concerns about her ability to live independently.

Dissemination

Findings were disseminated through a number of sources including the official report Making it Work (Jones et al, 2002), a Plain Facts (Morgan et al, 2002) summary, produced in collaboration with the Norah Fry Research Centre at Bristol University, and a video presentation by the trainee researcher, both of which were produced for people with learning difficulties, and a brief summary Findings (Jones et al, 2002a) aimed at policy-makers and published, along with the report, by the Joseph Rowntree Foundation. The trainee researcher was awarded a further three month contract from the Joseph Rowntree Foundation to disseminate the findings in person to local People First Groups, supported employment agencies and employers. His conference presentations comprised the People First Wales Conference in September 2001 (Morgan, 2001), mentioned above, and a co-presentation of a paper with other members of the research team at the Anthropology Wales Conference in November 2001 (Jones et al, 2001). In these ways, the findings of the project were disseminated to a wide constituency, including self-advocates, service providers, users, carers, academics and employees.

Discussion

On one level the project could be seen to be a successful example of participatory research. Findings that led to recommendations for policy makers, employers, supported employment agencies, job coaches and supported employees were extracted from the data collected by the various qualitative methods.4 Examples of good practice and guidelines for the adoption of reasonable accommodations in the workplace were suggested (Jones et al, 2002: 35-38). By involving People First Wales prior to applying for the project funding, a good relationship was built between the researchers and self-advocates. Members of People First Wales assisted in defining the research problem and gave advice throughout the project through the Consultation Group. By employing a person with learning difficulties as a trainee researcher, the research team also gained experience for themselves of what it is like to be an employer, job coach and supported employee. Jeff learned the skills of interviewing, focus group facilitation and observation, as highlighted throughout this paper with extracts from his field notes. His comments on the research process were an important element in the data analysis.

As part of the published report on the project, we included a chapter about the researchers' experiences, noting that we all felt that we needed support in some way as employees. Both grant holders went on maternity leave at different points during the project, and their time was covered by the Research Assistant, Dé Murphy, who consequently worked most closely and most often with the trainee researcher, Jeff. We concluded that we all felt supported in our employment: for example by the funders, the Joseph Rowntree Foundation, who extended the project to accommodate the two periods of maternity leave and by David Felce, the director of the Welsh Centre for Learning Disabilities Applied Research Unit who allowed one of the grant holders to work mostly at home. The whole research team supported each other, adopting a flexible approach that accommodated childcare and geographical considerations. Dé acted as job coach to Jeff, training him and supporting him on the job.

Reasonable accommodations were made in the induction and training programmes that Jeff undertook as a new employee, and although staff at the Applied Research Unit were usually expected to own and drive a car to work, an exception was made in Jeff's case and other members of the research team would drive him to wherever he needed to be in order to carry out his research responsibilities. Jeff's previous experience as a self-advocate, including being Chair of the People First Wales Executive Committee was invaluable. He viewed his "insider status" as beneficial. Reflecting on the focus groups, he noted that: "It was more comfortable for them talking to me because as I am disabled myself and they would be more open towards me" (Jones et al, 2002: 30) and "One person was the quiet type of person who will say 'Yes' or 'No' to everything. I could tell because I have had 25 years' experience with people with learning difficulties. I know how they think." (Jones et al, 2002: 31) His expertise was recognized by the rest of the research team:

Jeff's contribution of his own experience actually resulted in more information being gathered. This was particularly true in the focus groups, where his input brought about the desired discussion that a focus group is meant to be, rather than the group interview that they had been leaning towards. (Jones et al, 2002: 32)

An example of his valued expertise was when Jeff contributed to the focus group discussions around positive feedback from managers in the workplace. One of the participants suggested that he did not get much feedback of any kind, at which point Jeff said, "That's good in a way because they know that he's a good worker," which led to other participants agreeing that the situation was similar for them and that not having feedback was in fact positive as in the sense that "no news is good news."

As trainee researcher, Jeff's experience in self-advocacy and his insider status (Mascharenas-Keyes, 1987) was able to give the rest of the research team advice as the most appropriate language to use in the focus groups and interviews. He also made us aware of how inaccessible the language of a research report can be, let alone academic journal articles which tend to include more theoretical debates and methodological deliberations.

In some ways then the research project could be described not only as participatory, but as an example of good supported employment practice. But what happened after the project was over? Whilst I have gone on to work on another research project, Julia Shearn and Dé Murphy have both chosen to move on to new careers. Jeff Morgan, however, has not been able to continue his career in research, though he would have liked to. As noted above, his contract was extended by the Joseph Rowntree Foundation for three months so that he could visit local People First groups in Wales to talk about the project. Thus, he was employed after the three other researchers' contracts finished. He continued going to the Welsh Centre for Learning Disabilities office, but without funding or time dedicated to working with him, colleagues were unable to support him in the intensive way that he had been supported during the research project, which had included a range of practical assistance ranging from help with transport, to explanation of texts and assistance with writing. Jeff did have a consultation with a supported employment agency, but concluded that the sort of work that they were able to offer him, such as supermarket trolley work, would not be interesting and demanding enough for him. He has continued as a self-advocate, actively involved in People First, as have members of the Consultation Group, but the partnerships that evolved over the course of the project have not been sustained, and although participation in research was a reality for Jeff and the other people with learning difficulties involved with the project, it was only a very fleeting participation.

One reason for this is the temporary and uncertain nature of contract research work. The more experienced researchers' contracts came to an end following completion of the project, so they were not in a position to carry on working with Jeff. Since the project's completion, I have worked freelance as a social researcher and as a tutor at the Open University to earn my living prior to taking up my present three-year research position, all of which I have been able to do as a consequence of my academic qualifications and experience. It is hard to imagine a person with learning difficulties securing similar jobs to "tide them over" until the next contract comes along: it would be a very brave person indeed who decided to come off their state benefits in order to pursue such an unreliable career. Academia itself is hardly welcoming in any case. It is a place after all that celebrates intellectual achievement and encourages the sort of writing that Jeff found incomprehensible and boring: "How can anybody understand this?" he asked when reading drafts of the final project report (Jones et al, 2002: 32). How much more inaccessible are some of the arguments within the social sciences, including current debates within disability studies about ontology and how valuable or limited the social model of disability is?

Although the research project aimed to be participatory, and ticks most of the boxes for meeting the 'participatory' criteria, the social relations of research production and the structural barriers for real participation by people with learning difficulties in research have not been challenged. The Consultation Group members, the trainee researcher and the executive members of People First Wales who initially advised on the project were all participants in the project, but only for a short time. Through producing a video and Plain Facts publication about the research, together with presentations in conferences, newsletters and to local self-advocate groups, the findings have been disseminated to people with learning difficulties so that they can find out about strategies for success in supported employment themselves. But in this case, it seems as though participatory research does indeed seem to have been "a pragmatic compromise" (Chappell, 2000: 40). The trainee researcher has been unable to make the transition from trainee to researcher.

As Willett et al (2001: 271) point out, several writers have identified and discussed similarities between liminal status during a rite of passage, where rites of separation symbolically remove an initiate from her/his existing place in the social structure, and the status of disabled people within society. Utilising the work of anthropologists Arnold van Gennep (1908) and Victor Turner (1967, 1969, 1974), who analyze how people in a state of liminality are "betwixt and between," occupying the lowest social positions within a society, Willett et al (2001: 271-273) note that in "traditional" societies, hierarchical differences in existence before the transitional period are ignored by liminars. However, in what they call our Western "hypermodern" society, there is ambiguity because symbols and rituals have become blurred, the society is very hierarchical with a strict division of labour. This labor division leads to a limit in the power of liminality and a reduction in "communitas" or anti-structure that challenges established hierarchies. If one considers the case of the trainee researcher, Jeff, one can see that in a certain sense he was an initiate in the role of social researcher. He underwent training and carried out fieldwork, both elements of the rites of passage in social research careers. However, he was unable to permanently become a member of the social research community, or be incorporated within the academic world. Robert Murphy (1990) has argued that disabled people experience a state of social marginalization, permanently situated on the threshold of or outside the formal social system. Despite the best efforts of our research project to be participatory, the people with learning difficulties have not been able to be fully incorporated into the world of research, though they did experience a brief initiation into and taste of that world. The structural barriers were too strong for the anti-structure process of "communitas" to challenge the status quo. These barriers included lack of access to long term or permanent employment opportunities, non admittance to a career ladder within a competitive field which rewards intellectual achievement and peer-reviewed published written outputs, lack of incorporation into the academic community, absence of capital in terms of research funding and notably — and sensibly - having to rely on benefits because of all these barriers.

Whilst all these obstacles remain, people with learning difficulties cannot ignore or break down the hierarchical differences, and the whole system of social research ensures that the hierarchy continues. So although this was a participatory project, achieving some of the ethical and political goals associated with this methodological approach, and people with learning difficulties found a central position and incorporated themselves into the social research process, it was so for a limited period and then they returned again to the margins, reflecting their side-lined status in society in general and even within the social model of disability (Chappell, 1998). In particular, the trainee researcher's rite of passage into the world of social research was unsuccessful. He did not move from liminality into incorporation into a new social status, but returned to his previous marginalized status. It may be that for a short period his social status was enhanced through his own self-esteem and the admiration of others, perhaps through presenting at People First and academic conferences, for example. But the participatory process was too short for any real impact to have been made on his position within the world of social research and academia, or indeed the wider social world.

References

Endnotes

  1. The terms "learning difficulties" and "learning disabilities" are approximations of the North American term "intellectual disabilities," with "learning difficulties" being the expression preferred by self-advocates.
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  2. The Joseph Rowntree Foundation is a large UK social policy research and development charity.
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  3. The University of Bristol's Norah Fry Research Centre produces the series Plain Facts in magazine and audio tape form. Each publication accessibly presents findings from a research project and it is aimed at people with learning difficulties and their supporters.
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  4. The strategies for success in supported employment identified by the research included, in brief: the adoption of anti-discriminatory polices and practices in the workplace; on-going support from supported employment agencies; accessible two-way communication between supported employees and workplace managers; training in social skills, a work ethic and work-place culture; support from a co-worker at a supervisory level.
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