Abstract

This paper explores the experiences of participatory PhD research with six disabled people in Kuwait. The contributors participated in my PhD project (which was conducted with the University of Manchester) as co-researchers. The paper attempts to answer the following questions: What are the co-researchers' motivations behind participating in this research? Do the co-researchers believe that they will benefit from this process and if so, how? What are our (i.e. the researcher and the co-researchers) experiences of the process of participatory research? The findings highlight the process of participatory research with the co-researchers and highlight the issues of power relations, skills development and reciprocity, decision-making processes and sharing experiences, and the possibility of this research opening the door for further research and attitudinal change.


Introduction

This paper is divided into two sections. The first section explores both the nature of disability research in Kuwait and disability research in the Global North. In relation to disability research in the Global North, I will focus particularly on two kinds of research strategy: emancipatory and participatory research.

The second section explores the experiences of six disabled people who participated with me as co-researchers in my PhD project at the University of Manchester. My PhD project was participatory in nature, aimed to explore disability-related issues in the Kuwaiti context in order to develop a film that aimed to raise the awareness of disability issues amongst individuals living in Kuwait. Throughout the research process, the co-researchers and I were able to conduct several focus groups and interviews with both disabled and non-disabled people in order to explore disability issues in Kuwait and thus develop a suitable disability awareness film. Fourteen meetings were set up with the co-researchers at the sports club for disabled people. The aims of these meetings were to generate and analyse data collectively, discuss and revise the research plan, and explore disability in Kuwait and support the creation of the disability awareness film.

However, this paper is primarily a reflection and analysis of the process of participatory research and the relationship between myself as a main researcher in this project and the disabled informants who participated as co-researchers, a process that is often related to the qualitative paradigm in general and inclusive research in particular; that is, reflexivity. Reflexivity is a practice that "is commonly used in qualitative research and has been posited and accepted as a method qualitative researchers can and should use to legitimize, validate, and question research practices and representations" (Pillow, 2003, p.175).

Thus, the paper aims to answer the following questions:

  • What are the co-researchers' motivations behind participating in this research?
  • Do the co-researchers believe that they will benefit from this process and if so, how?
  • What are our (i.e. the researcher and the co-researchers) experiences of the process of participatory research?

The Nature of Disability Research

The Kuwaiti context

To date, most of the disability research in Kuwait has been quantitative and medically focused (e.g. Shah, Badr and Shah, 2011; Al-Hashel, Ahmed, Behbehani and Alroughani, 2014; Al-Temaimi, Alroughani, Jacob and Al-Mulla, 2015). There are also a number of studies can be classified as cultural/social and educational. These studies were conducted by a disability lecturer in the College of Social Sciences at Kuwait University, Hayfaa Al-Kandari. In her quantitative research, Al-Kandari aims to provide a cultural/social analysis of a particular phenomenon as having an effect at the political level (see Salih and Al-Kandari, 2007; Al-Kandari and Salih, 2008; Al-Kandari and Al-Qashan, 2010; Al-Kandari, 2014). For instance, Al-Kandari (2014) explored the differences in the perceptions of professionals and families of learning disabled children in relation to services that are needed for the families of learning disabled pupils in special education schools. The findings of her study would be useful in helping social service providers and professionals in Kuwait to identify and apply laws that meet the needs of the families of learning disabled children and give them chance to be part of their children's educational decisions.

In addition, Al-Kandari's (2006) research touches on psychological factors such as stress and depression that may affect the families of disabled children and assesses the attitudes of non-disabled people towards disabled people. As an example of the latter, Salih and Al-Kandari (2007) find that prospective teachers who completed a course about social work with disabled people showed negative attitudes towards learning disabled students. Furthermore, Al-Kandari and Salih (2008) demonstrate through their research that disability is culturally/socially stigmatised among non-disabled people; disabled people, specifically those who are learning disabled, are unable to participate effectively in society. This orthodoxy causes families to exclude their disabled children and hide them from sight.

These studies are valuable on the social and cultural level, as they allow one to identify the perspectives of disabled people's families and the attitudes of some non-disabled people towards disabled people. However, as Al-Kandari (14 July 2014) confirmed, when I met her, these studies have changed nothing in the state's policies in relation to disability. I believe that these shortfalls can be attributed to both sides of the debate (i.e. academics and politicians). First, they can be attributed to a lack of coordination between the academics and politicians in partnership research between the universities and the government. Second, Al- Kandari's studies have provided general recommendations about what needs to be done, but they lack clarity on how these suggestions can be implemented to improve the lives of disabled people in Kuwait. For example, if there is a stigma, and shameful and negative attitudes are held by non-disabled people towards disabled people, how can they be challenged? In other words, what plans and strategies should the state adopt to raise awareness among non-disabled people? Third, among all these studies, the presence of disabled people is glaringly absent. All participants in Al-Kandari's studies are non-disabled people, raising the question, what is the role of disabled people? What are their views about these disability issues? Why are their views absent in Kuwaiti research about disability? Through the exploration of the Kuwaiti disability research, it seems that disabled people are not even research subjects, let alone participants or co-researchers.

In addition, other criticisms can be directed at Salih and Al-Kandari's studies regarding the nature of the language used in their papers. For example, they used the term 'mental retardation' to refer to learning disabled individuals (see Salih and Al-Kandari, 2007; Al-Kandari and Salih, 2008). In relation to this, I want to argue that the use of such terms reinforces negative ways of thinking about learning disabled people and causes them to be less valued (Shakespeare, 2014). Additionally, academic researchers in Kuwait have been negligent in conducting qualitative research, which can provide deeper analysis and give disabled people a chance to share their experiences at different levels, including medical/psychological, political/economic, cultural/social, and environmental (Hartley and Muhit, 2003).

Nevertheless, Maysaa Bazna is one of few scholars in Kuwait who is interested in exploring disability through conducting research with a qualitative or interpretive paradigm. The work of Bazna (e.g. Bazna and Hatab, 2006; Bazna and Reid, 2009; Bazna, 2009) centres on the criticism of the Western medicalisation imported in the Kuwaiti context without any consideration of context or cultural sensitivity. Bazna and Reid (2009) and Bazna (2009) suggest that the Western medicalization is not consistent with Kuwaiti culture, Arabic traditions, and Islamic values. The authors consider these imported Western norms to be a form of colonisation that carries specific norms/standards to determine the relationships between the West and the East (Young, 1995). However, the authors have not provided sufficient evidence on how these Western norms conflict with Kuwaiti culture, Arabic traditions, and Islamic values specifically. Moreover, Bazna and Reid (2009) fall into the same trap (i.e. cultural sensitivity) when suggesting the importation of other models such as the social model or the models built in social constructionism or postmodernism into Kuwait. The authors suggest that these alternative models are more consistent with Kuwaiti culture than the individual model, but they have not provided evidence to support their argument. In other words, without exploration of these models, the reader is left empty-handed.

Global North: Emancipatory and Participatory Research

As a result of excluding disabled people from the production of disability research scholars, such as Finkelstein (1985) and Oliver (1992) adopt research strategies that are both emancipatory and empowering (Kitchin, 2000). Oliver (1992) has criticised both positivist and interpretive paradigms for maintaining the social and material relations of research production unchallenged. He states that the positivist paradigm shows the experiences of disabled people as extremely distorted because it shows disability as an individual problem. He also notes that the work undertaken within the interpretive paradigm has failed to have any effect on disabled people's services and their quality of life. Briefly, Oliver (1992, p.106) sees that:

… interpretive research is just as alienating as positivist research because what might be called 'the social relations of research production' have not changed one iota. Not only that but the defects of both positivist and interpretive approaches merely reinforce one another.

Due to this situation, Oliver (1992) and other disability researchers such as Zarb (1992) and Stone and Priestley (1996) have called for an adoption of research strategies that are emancipatory, empowering, and relevant to the lives of disabled people. Emancipatory research challenges social oppression and the power structures that fund and form the social relations of research production; moreover, it is based fundamentally on reciprocity and achieving social change/transformation through the empowerment of research participants (Oliver, 1992). However, the issue of emancipatory research is not about empowering participants, but about enabling disabled people to play an active role in the research and making them more than participants. As Oliver (1992, p.111) puts it:

The issue then for the emancipatory research paradigm is not how to empower people but, once people have decided to empower themselves, precisely what research can then do to facilitate this process. This does then mean that the social relations of research production do have to be fundamentally changed; researchers have to learn how to put their knowledge and skills at the disposal of their research subjects, for them to use in whatever ways they choose. The task for emancipatory research is not, as is sometimes implied, to help the researched to understand themselves better, but to develop its own understanding of the lived experiences of these very subjects.

Oliver (1997; 2002) emphasises the same issues that he raised in 1992: criticising the social relation of research production and the research methodologies that cause the alienation and disempowerment of disabled people. In 1997, he confirmed the principle of reflexivity in emancipatory research, no matter how painful, and stated that one cannot claim that his/her research is emancipatory until after it has taken place and its impact has been witnessed. Thus, the role of the researcher is to engage in the research process and facilitate the way for those who are pursuing emancipation. The researcher should facilitate the self- empowerment of disabled people and engage in the process of research, and the nature of engagement should be decided by disabled people themselves (Stone and Priestley, 1996). Therefore, the main task of the emancipatory paradigm is to change the material and social relations of research production, and place control in the hands of the researched, not the researcher (Zarb, 1992; Oliver, 1997).

Shakespeare (1996), on the other hand, holds a pessimistic view of emancipatory research, as he reveals that:

I have major reservations with the concept of emancipatory research, even while admiring the motivation and commitment of those engaged in it. I am cynical about the possibility of research achieving major change, whether it be radical and emancipatory, or traditional social policy research. Ideas clearly have a role, but actions decide the day, and while it is possible to make the research process more balanced, grandiose claims for its revolutionary potential seem to me to be over- optimistic (Shakespeare, 1996, p.118).

It can be seen from this extract that Shakespeare addresses both emancipatory and traditional research in his criticisms, confirming the notion that ideas rarely influence and change society, if they are not accompanied by practical actions. Therefore, he stresses the reconciliation of theory and practice.

Zarb (1992) expresses an opinion similar to Oliver, as he points out that research regarding disability, until that point in time, was not managing obviously to empower disabled people; all that one could achieve at that time was participatory research. However, according to Zarb (1992), participatory research that helps to identify the needs and experiences of disabled people can be a precondition of emancipatory research, through recognising the challenge to the ideology of objectivity and putting it into practice.

The rise of participatory research strategies constitutes an essential shift "from doing research on people to doing research with people" (Swain and French, 2004, p.1). Involving disabled people in participatory research might thus give them a chance to share their voices and experiences of disability issues, thereby opening the door to further research. This approach accords with Maguire's (1987) suggestion that "participatory research offers a critique of, and challenge to, dominant positivist social science research as the only legitimate and valid source of knowledge. It provides a radical alternative to knowledge production" (p.11). In general, disabled people have little opportunity to share their experiences through research. As Morris (1991, p.8) states, "Disabled people […] have little opportunity to portray our own experiences … This lack of a voice, of the representation of our subjective reality, means that it is difficult for non-disabled feminists to incorporate our reality into their research". Thus, participatory research provides opportunities for non-academic disabled people to participate in the entire research process, including in the generation of ideas, hypotheses, data analysis and interpretation, and writing the final report (Kitchin, 2000). Academics in the field of Disability Studies, such as Wamsley and Johnson (2003), also emphasise that disabled people should be able to exercise some control over research processes and outcomes.

As outlined earlier in the paper, these two kinds of research (i.e. emancipatory and participatory) that aim to engage disabled people in the research are not currently found in the research literature in Kuwait. Thus, this project is likely to be the only study in Kuwait that provides disabled people with an active role to in the research processes as co-researchers. Although it is vital, as Wamsley and Johnson (2003) point out, to give participants some control over the research process, an equalising partnership seems an unrealistic goal, to me, echoing Shakespeare (1996, p.118):

I aim to equalise the research relationship, and give participants some control over the process, over their words and over their participation. I try to be accountable to research participants, and I am committed to representing interviewees and giving them a voice within my publications. At the end of the day, I am not naive enough to imagine I have completely equalised the relationship, because I believe this is ultimately impossible. I write the articles; I have the academic voice and authority; I have the education and the language which contributes to the acceptability of what I write (Shakespeare, 1996, p.118).

The Experiences in Participatory Research Processes

Six co-researchers participated in the project (five physically impaired people, and one partially-sighted person). There were two females and four males participating in two focus groups. Also, there were two pair interviews with two co-researchers conducted at the end of the project. The aim of these focus groups and interviews was to explore the experiences of the co-researchers with the process of participatory research.

Research Process

This participatory study offers self-reflexivity throughout the research process:

Self-reflexivity acknowledges the researcher's role(s) in the construction of the research problem, the research setting, and research findings, and highlights the importance of the researcher becoming consciously aware of these factors and thinking through the implications of these factors for her/his research (Pillow, 2003, p.179).

The self-reflexive exercise helped the co-researchers and myself to shed light on the issue of power relations between the co-researchers and myself, as a non-disabled researcher, as well as how these issues affect decision making. In addition, it allowed us to discuss the challenges we faced, and whether certain aspects could have been carried out better. The possibility of this research paving the way towards empowerment and emancipation was also addressed. This exercise was practised effectively through the regular meetings conducted with the co-researchers during the fieldwork. In these meetings, the co-researchers and myself were able to effectively provide on-going reflections on the research processes. In the following pages, I will show the exercise of self-reflexivity by exploring the strategies the co-researchers and I followed to ensure the reliability and validity of this project, the analysis process (e.g. coding strategies and the themes emerged) and the analysis of the focus groups and interviews conducted with the co-researchers.

However, before commencing with exploring these issues, it is important to note here that I am aware that "the illicit politics of the pronoun is neglected. An 'I' that stands for a 'we' amounts to theft, while a 'we' that expresses an 'I' is a fraud" (Blyth, Chapman and Stronach, 2016, p.292). Therefore, in the next section, I will be careful and clear in stating what tasks/roles I have undertaken individually, and what tasks/roles the co-researchers and I have undertaken collectively. I will use the pronoun 'I' to refer to the roles that I have undertaken individually and 'we' to refer to the roles that the co-researchers and I have jointly undertaken.

Reliability and Validity

One issue with regard to enhancing reliability is 'collective analysis', or what Silverman (2014) calls 'inter-rater reliability', defined as "comparing the analysis of the same data by several researchers" (2014, p.90). In relation to this process, this research was designed to reinforce the spirit of collaboration throughout the process. It was based fundamentally on analysing the data collectively with the co-researchers and on continuous interactions with the data set.

Moreover, other strategies I have taken into consideration are those suggested by Morse et al. (2002). They suggest verification strategies for ensuring rigour in qualitative research that is cultivated in the research process specifically, rather than strategies that can be checked by external reviewers at the end of the project. These strategies include verification strategies such as methodological coherence, sampling sufficiency, developing a dynamic relationship between sampling, data collection and analysis, thinking theoretically, and theory development. I have followed all of these strategies in this project.

The first verification strategy is the 'methodological coherence'. This strategy aims to ensure consistency between the research questions, the methods of data collection, and the analytic procedures. Clearly, this is a qualitative project, so the methods of data collection that helped us to answer the research questions were qualitative, such as focus groups and interviews. I found these methods potentially useful in answering the research questions. However, Morse et al. (2002) add that this strategy is not merely about designing appropriate methods: it is also about treating the data differently by changing or modifying methods if required. For example, it was determined in my research proposal that the data-generation method for the last research question (i.e. about the co-researchers' experiences of the project) would be a focus group with the participants who collaborated with me on the project. However, this goal was not achievable. I contacted all co-researchers who collaborated with me, but I was able to meet up with only two of them. Since it was not possible to run a focus group with only two participants, I changed, after a consultation with the two co-researchers, the methods of data generation from a focus group to interviewing the participants as a pair.

The second verification strategy is the 'appropriateness of the sample'. Morse et al. (2002) confirm that the participants should be representative and have knowledge about the topic. As the participants who worked with me on the project were co-researchers, they were familiar with the topic and became more involved in the research process over time. The non-disabled participants and the additional ones who participated in the disability awareness film were also able to gain information about the project and its purpose before taking part.

The third strategy is 'collecting and analysing data concurrently'. For Morse et al. (2002), this process is essential for reaching reliability and validity. The co-researchers and I looked at the data generated directly after each focus group or interview. This interaction with the data was helpful in making decisions about the needs of the process and project.

The fourth strategy is 'thinking theoretically'. This is a concern that the ideas emerging from the data are reconfirmed in the new data (new ideas), which must be verified in the data already generated: "thinking theoretically requires macro-micro perspectives, inching forward without making cognitive leaps, constantly checking and rechecking, and building a solid foundation" (Morse et al., 2002, p.13). One way to achieve this, and thus increase validity in this type of research, is by the use of critical reflection throughout the research process (Melrose, 2001), or what Shenton (2004) calls 'reflective commentary'. Shenton (2004) suggests that reflective commentary includes recording initial impressions of data-generation sessions to help clarify themes generated from the data and theories. As the nature, procedures, and practices of this project suggest, this exercise was crucial in this type of research.

The final strategy is 'theory development'. Morse et al. (2002) confirm that this is about determining whether the data generated in the study can potentially constitute a conceptual or theoretical understanding. Thus, for them, theory can be developed as an outcome of the research process and as a pattern for comparison and further development of the theory. Therefore, determining the continuous interplay between data collection and analysis throughout the research process can lead to the development of a grounded theory (Strauss and Corbin, 1998). This is important, and could lead eventually to a theorising of disability in Kuwait.

Another strategy that I have taken into consideration to verify validation was 'member checking' (Fraenkel and Wallen, 2006) or 'respondent validation' (Silverman, 2014). Fraenkel and Wallen (2006) define 'member checking' as the process of participants reviewing the accuracy of the research report. However, Silverman (2014), by drawing upon the works of theorists such as Bloor (1978; 1983), Abrams (1984), and Fielding and Fielding (1986), reveals that respondent validation of the final report is problematic, as the language used in the final report may be not accessible for research participants or they may not be interested in the topics. Nevertheless, he confirms that this does not imply that the researcher should not seek feedback from the participants. Instead, rather than validating the final report, researchers can deal with feedback on the accuracy of the dialogue throughout the research process as another source of data and suggestions for further analysis.

As this research is based on ongoing interactions with the data throughout the research process, this exercise (i.e. respondent validation) has been taken into consideration. I was able to check the accuracy of the transcripts from the focus groups with the co-researchers. This exercise was useful for us as it helped us to decide on whether we needed to collect more data and the characteristics of the participants who we intended to invite into the project. However, on the other hand, we were not able to check the accuracy of the interviews conducted with the non-disabled participants. I sent the transcripts for each individual in order to check what was said and asked them to provide feedback, but I received no response. This may be due to their busy work schedules, lives, etc., or different priorities.

The Analysis Process

In order to analyse the data, thematic analysis was an appropriate approach that enabled us to answer the research questions. We have followed particularly the six phases suggested by Braun and Clarke (2006) which include becoming familiar with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report.

Phase One: Becoming Familiar with the Data

I collected the data for this project myself. All focus groups and interviews were voice recorded and field notes were written in Arabic. The data was required to be transcribed into written form (Braun and Clarke, 2006). Thus, I transcribed the data into Arabic and then translated this into English; the data obtained in both languages was read repeatedly to search for meanings.

In this phase of analysis, it is a good idea to start taking notes or marking ideas for coding (Braun and Clarke, 2006). I worked initially on analysing the data collaboratively with the co-researchers. As a result of this collaborative work, the co-researchers and I were able to generate "an initial list of ideas about what is in the data and what is interesting about them" (Braun and Clarke, 2006, p.88).

Phase Two: Generating Initial Codes

At this stage, we looked together at all the data generated for the purpose of this study and searched for potential codes across the data set. Figure 1 illustrates the initial coding process of an extract from the data of the first focus group with the co-researchers. The extract consists of the discussion on benefits the co-researchers' gained from the research processes. After examining all of the data, we were able to develop potential codes.

Diagram of a coded discussion between two co-researchers. Description below. Text of discussion can be found in Extract 1

Figure 1: Generating Initial Codes from an Extract of the Data

The figure above contains an extract of my question regarding how the co-researchers feel this research can add to them if they work on it. The extract shows two co-researchers (Kholood and Saja) discussing this matter. The co-researcher Kholood stated that the research can change people's points of view around disability and disabled people. She also revealed that they wanted to do this research because they wanted to help me with my PhD, and also wanted people to know more about disabled people. She finally stated that they can benefit from the process, as they can know how to do research in a better way (developing research skills).

Phase Three: Searching for Themes

This phase begins when all data has been initially coded and collated across the entire data set (Braun and Clarke, 2006). By examining the data set and the codes generated, we were able to produce an initial thematic map.

Phase Four: Reviewing Themes

This phase consists of two levels of reviewing and refining: level one involves reviewing at the level of the coded extracts and level two involves a similar process but in relation to the entire data set (Braun and Clarke, 2006). From this phase, I started to work individually. Also, from this phase, as my reading of the literature expanded, I became more theory-driven, interested in specific features in the data set (Braun and Clarke, 2006). Specifically, I became more interested in how the co-researchers make meaning of their experiences and how society imposes those meanings. Also, in this phase, I was looking for singularity in the data. In a sense, I became more interested in searching for disability issues that give specificity to the Kuwaiti context. As a result of this, I reviewed the codes and themes and refined and deleted some that were unnecessary.

Phase Five: Defining and Naming Themes

This phase involves the defining, refining, and naming of the themes in the final analysis (Braun and Clarke, 2006). I went back to the data extracts for each theme to organise the themes and sub-themes in a coherent manner. In this phase I was able to tell the story that each theme captures and its relationship with the overall story throughout the data, and in relation to the research questions (Braun and Clarke, 2006). Figure 2 shows the final thematic map of the data set that is related to the research process.

Phase Six: Producing the Report

The write-up of a thematic analysis is intended to tell the complicated story of the data in a way that convinces the reader of the value and validity of the analysis (Braun and Clarke, 2006). The next section discusses the overall story of the data set. The final report includes data extracts for each theme.

Diagram showing the main theme, Research Process, in green, with arrows leading to the five other themes

Figure 2: Final Thematic Map, Showing One Main Theme

The figure above shows the final thematic map of the data set. The figure illustrates one main theme (i.e. research process) and five sub-themes as follows: developing research skills, changing social attitudes and social structures, whose research, research difficulties, and hearing from the others.

Findings and Discussion

The co-researchers expressed several reasons why they agreed to work with me as co-researchers and participate in this project. The most important point was changing people's views on disabled people and disability:

Extract 1

Kholood: This research can help us change people's points of view around disability and disabled people… and also, we want to help you with your research. We want people to know more about disabled people… we also can benefit from the process, as we can know how to conduct research in a better way.

Hussain: Can this research help you develop research skills?

Kholood: Yeah, and change people's views.

Hussain: "And change people's views", is this an important issue for you?

Saja: Yes.

Kholood: And benefits you in your research.

Hussain: And benefits me.

Kholood: Inshallah.

Hussain: What else?

Yagoub: As my sister said, to change people's views – this is essential.

It is clear from this extract that the co-researchers had several reasons for agreeing to participate in this project. In the following sections, I will discuss each of these reasons separately.

Developing Research Skills

The co-researchers stated that one of the motivations behind engaging in this research was to benefit from the research process by developing research skills, such as preparing interview schedules, data analysis, and critical thinking skills.

Extract 2

I benefited from the way we do research. I mean the steps… in my work at university, I carry out research, but there are steps you made me aware of… I have never analysed before; I cannot say I will apply this now, but I will follow [these steps] in the future… I used to give presentations and get my marks… You taught me how to deal with research in the right way and I thank you for this.

(Saja, female, aged 24)

Kholood confirmed this notion:

Extract 3

This is my first time doing research in this way… ah, em, I mean I used questionnaires; I mean we have learned these things at university… but this is my first time doing research like this, complete research, video, case study… and discuss everything… everything we say, we discuss it in other meetings… this is the first time we learnt this.

(Kholood, female, aged 26)

These two extracts highlight that Saja and Kholood felt that they had benefited from the research process by developing new skills, such as qualitative research skills and analysis. In fact, developing new skills is important in participatory, emancipatory, and inclusive research; researchers conducting inclusive research who seek to support disabled participants need to use the necessary research skills throughout the research process (see, for example, Abell et al., 2007; O'Brien, McConkey and Garcia-Iriarte, 2014; Stevenson, 2014; Strnadová, Cumming, Knox and Parmenter, 2014). However, relatively few studies have highlighted power relations or supported the developing of research skills (O'Brien et al., 2014). Highlighting power relations and the awareness of where the power lies and who affects it is crucial in this kind of research (Chapman, 2005). In this project, I tried to address power relations by providing the co-researchers the opportunity to acquire some of the skills I have, thus creating a situation where power is more equally balanced (as much as I possibly could in these situations). However, my attempts to provide the co-researchers an opportunity to acquire some of the skills I have could not equalise the balance of power, as in this type of research, one can never equalise the balance of power. In these situations, the participatory research is often led by the academic researcher (Kitchin, 2002).

This study, however, draws upon some of the principles of participatory research by sharing expertise with the co-researchers and supporting them in an effective way (Walmsley, 2001). Furthermore, by highlighting the issues of power relations and skills development, one can explore the complexity that is often ignored (such as failures, frustrations, and difficult times faced by researchers) in collaborative research (McClimens, 2008). The issues of power relations underline the complexities of the researcher's role and raise the question regarding whether the role of the researcher is only to support co-researchers or seek empowerment and make a contribution to developing skills (Chapman, 2005).

In this project, I tried to provide the co-researchers the opportunity to learn the skills required to conduct qualitative research. In Extract 3, Kholood referred to quantitative research by saying that she used questionnaires and that this was the first time she conducted qualitative research. Nevertheless, although Kholood was initially a fan of quantitative research, the next extract (Extract 4) will show how she changed her view over time. In the pair interviews at a later stage, Kholood shared similar views to Saja's:

Extract 4

Saja: I don't consider questionnaires as research; I mean you give [it to] the student… he ticks the questions without reading them. He doesn't read the questions, I myself do not read questions… and one time, I know one person ticked on male and she was in fact female.

Kholood: [laughter].

Hussain: Do you think interviews are better?

Kholood: Yeah and more credible… Tell them that Kuwaitis do not care about questionnaires and they tick without reading, as she said they just want to finish it and give it back to you.

Saja: Also, a questionnaire is biased… the questions have been chosen by the person who has prepared it…

Kholood: The researcher limits them with particular answers… maybe someone has a different answer, which is not available in the choices.

This extract shows how Kholood changed her view of qualitative research over time by sharing criticism of quantitative research with Saja. They also stated that they had never conducted qualitative research before, talked about the new qualitative skills they learnt (as in Extracts 2 and 3), and specified that Kuwaitis do not care about questionnaires. This may give an indication of the domination of the positivist paradigm and the lack of popularity of the qualitative/interpretative paradigm in Kuwait.

Nevertheless, there is another important reason why Kholood may have changed her mind. Since she knew I was a qualitative researcher, she may have wanted to be included in the project to please me. This was clear in Extract 1 when Kholood stated that one of the reasons why she agreed to participate in this project was to help me with my research. This situation is an example of how the political identity of the academic researcher can have an influence of the co-researchers' preferences (Liddiard, 2013).

Whose Research?

The questions regarding who was in control and whether the members were only research participants or co-researchers occupied my mind a great deal during and after the research process. Therefore, it formed an important theme for discussion in the last two interviews with Kholood and Saja. They both revealed that they believed their roles were important in changing the research path:

Extract 5

Hussain: Ok, throughout the research process, who was more in control? You or me?

Kholood: … our ideas were listened to… you take our ideas, if it is good we do it, if not, we cancel it and think about another idea together. I mean it was your and our opinions together.

Saja: You came to us with an idea to create an online course. We changed this idea as a group.

The co-researchers believed that they had some control over the research agenda. However, at the same time, in this extract Kholood put the onus on me regarding judging whether something is 'good or not'. This gives impression that she perceived my position as an expert or 'knower' in the field who was more able than them to judge whether certain ideas/suggestions were good or bad. This brings to the fore the dilemma that is often associated with both positivist and interpretative paradigms when the academic researcher is perceived as an expert and 'knower' (Stone and Priestley, 1996). In other words, she perceived me as a "professional as the holder of 'privileged' knowledge and experience against the 'amateur' knowledge of the…[co-researcher]" (Burnett, 2007, p. 6). This extract also raises the question related to whether the ideas raised by the co-researchers truly changed my mind.

My honest answer is no. They did not really change my ideas; however, I would say that the events that happened during the research process (for example, the co-researchers' withdrawal) are one reason why I changed my ideas. It is true that although I had been listening to their ideas and views, I was in control of these ideas. If, for example, their views conflicted with my interest in obtaining my PhD or if they had views that differed from my initial research, this would have raised questions about their potential suitability. This is because of the nature of my research. As I am conducting this research with the University of Manchester, I am restricted by the university regulations and I have to follow my supervisors' guidelines.

Although both Kholood and Saja believed that their opinions had an impact on the research decisions, they were aware of the fact that their role in the research process was related to the disability issues rather than the research methodology:

Extract 6

Saja: We have more roles in the topics, but you have [more roles] in the form and methodology, but it was a complete role.

Kholood: You are more… but we had a role too… we have chosen together how many interviews we need and who do we need to interview and we have shared the work in preparing interviews schedules… but in the methodology, you know better than us about these issues.

Both Kholood and Saja believed in the importance of their roles throughout the research process, namely, constructing the research methods and disability topics, yet they thought that I had more control than they did on the research methodology as they believed that I knew more than they did. This may give the impression, again, that the co-researchers see me as an expert in the field, which raises issues of power relations again. This brings to the fore the epistemological assumptions made by academics and the academy in relation to what constitutes knowledge and the way in which 'proper' knowledge is constructed/discovered:

Academics working within the dominant paradigms for disability research (positivist and interpretative) have followed suit, casting themselves in the role of expert and 'knower' – a role which implicitly (and, on occasion, explicitly) maintains that the knowledge and experience of disabled people does not count (Stone and Priestley, 1996, p.701).

I do not think, however, that the issue was solely about knowledge and who knows more about conducting research; it was again an obligation per the university guidelines (that are often based on the positivist paradigm) that I had to follow before meeting them and inviting them to join the project as co-researchers. For example, I was not able to meet them and bring them in as co-researchers before I had prepared my research proposal and passed the panel; this highlights what I would consider a weakness in my attempt to make the project fully 'participatory'. Therefore, I was obliged to prepare my proposal and I decided to go ahead with a qualitative participatory research; I prepared my research questions individually. At the time, I was not able to do it differently (i.e. preparing my proposal collaboratively with the co-researchers) because of time constrains and different locations. This is another form of power relations that is clearly at odds with participatory research principles, and again, it was between the university, my supervisors and me.

A fully participatory research gives "disabled people [opportunity to] take an active role in the whole research process from ideas to hypotheses to data generation to analysis and interpretation to writing the final report" (Kitchin, 2002, p. 3). Including the co-researchers in the whole process was not possible in this research. The idea of making this project participatory was mainly mine. In other words, I decided to make this research participatory and give disabled people the opportunity to be included as co-researchers. This raises a power relation question. When non-disabled academics seek to empower disabled people by giving them an opportunity to participate as co-researchers, are they truly granting disabled people some power and some control or they are actually (because they decided to give disabled people this opportunity) reinforcing their own powers?

Changing Social Attitudes and Societal Structures

The co-researchers discussed the possibility of this research opening the door for further research and changing people's views on disability and disabled people:

Extract 7

Hussain: Do you think that this research can open the door for further research in Kuwait?

Kholood: Yeah, inshallah, will open and non-disabled people will also become more aware… so they know about our views… maybe this study emm… maybe there are people who have never known that their views or their movements or their words bother us… this study makes them know.

In this extract, Kholood seems optimistic about the possibility of this study opening the door for further research and making non-disabled people more aware about disabled people and changing their negative attitudes. Saja confirms the same notion as Kholood, i.e. the importance of raising awareness in society:

Extract 8

It is not about programmes, it is about awareness… you raise the awareness of society… you are an intellectual in society, you have petrol, you have workers, you have money – why don't you raise awareness? Why don't you make awareness campaigns? Why can't we be like America, see how people look at disabled people in America?

Although, Saja expressed the same view as Kholood, her opinions were expressed more strongly. She criticised the country for the negligence of disabled people and the lack of awareness campaigns despite the availability of human and financial resources. Therefore, for Saja, the 'problem' of disability is centred on changing not only social attitudes but also societal structures. She also compared Kuwait with the US, hoping that Kuwait will treat disabled people in the same way as they are treated in the US.

Changing societal structures and policies was one of the reasons why the co-researchers wanted to be involved in this project. They believed that this project might pave the way for social and political change:

Extract 9

Hussain: Ok… now you want to do this research to raise people's awareness and change their views… Ok, how can this research benefit you in the future?

Kholood: Maybe not just people's views but also things in the government can change.

Hussain: You mean policies?

Kholood: Yeah… or better preparation and accessibility in public places. Out of Kuwait, I can push my wheelchair by myself and I can go everywhere from the hotel to the shopping mall; here, I can't cross the street; I can't get down from the sidewalk of our house.

Kholood expresses her frustration about policies and creating accessibility. As a result, she sees this research as a potential vehicle to express and share their voices and reach decision-makers and politicians in Kuwait in order to achieve social change in terms of laws and create accessible environments for disabled people.

In relation to the methodology, although a number of inclusive research studies have been conducted around the world (for example, Atkinson, 2005; Chapman, 2005; Abell et al., 2007), this study appears to be the first in the Middle East to provide an opportunity for disabled people to participate throughout the process of conducting the research. In these three extracts, the co-researchers seem to suggest that by giving disabled people a voice to share their experiences, this study can help pave the way for social changes and the emancipation of disabled people in Kuwait. One might argue, however, that seeking the emancipation of disabled people is a rather ambitious goal for this research, yet this project can contribute to this overall goal by providing an inspiration and a basis for further research towards this aim. Thus, this research may not achieve "major change" (Shakespeare, 1996, p.118), but, at least, can start a conversation or 'plant a seed' towards possible social change.

Hearing from the Others

Other benefits of the research centred on identifying the views of both disabled and non-disabled people who participated in this project:

Extract 10

I myself benefited and enjoyed the study a lot… and I listened to other views from other people with different impairments. I knew how blind people behave who have impairments that are more severe than mine… the ones who have problems in communication; I was able to know their views; I didn't know before what problems they suffered from.

Also, there are people in society you have met; we came to know about their views, and with you, we have acknowledged decisions we have never heard about before… this was through your interviews with officials, lecturers, and the Imam… I mean we have seen what they think about disabled people.

In this extract, Kholood clearly showed the benefits of the study for her by identifying the views of non-disabled people who participated in this research as well as the group of disabled people who have different impairments from hers. Although it was not my intention to explore the issues regarding the nature of the language used by the co-researchers in this paper, it is worth pointing out some aspects of the language that Kholood used when referring to the other disabled people. When referring to those people, she "had created a biography that incorporated … [her] impairment into … [her] sense of identity in such a way as to normalise the impairment" (Watson, 2002, p.517). Although she recognised her impairment, she believed that blind people or those who have difficulties in communication have a more difficult time than she does. By doing this, she created a hierarchy categorisation by placing her impairment in a mild position and placing blindness and communication difficulties in a severe or difficult position.

Although Saja talked about the same idea, namely identifying the views of other people, she focused more on obtaining information about learning disabled people:

Extract 11

Saja: Now I know more about the people with intellectual disability, I see them here at the club… he looks normal you can see he lives a normal life and his impairment is mild and he can live normally… he goes to the coffee shops and drives a car, but he is intellectually disabled.

Hussain: What was your view before?

Saja: It was different. I thought intellectual [disability] means crazy [laughter].

Saja had a particular perception about learning disabled people before the study. In this last interview, she said that her view was now different as she used to see them as 'crazy'. In fact, during our meetings and focus groups, Saja would use words such as 'crazy' and 'demented' when referring to learning disabled people, so I am glad that at the end of the study she started to reflect upon her own attitude. However, I do not think that the matter is that simple. It is unrealistic and difficult to claim that one study can change what culture and media have fixed in people's minds over the years. The media in Kuwait shows learning disabled people in a negative way by describing them using inappropriate words and non-representative characters. Moreover, although Saja believed that her views on learning disabled people have changed, the fact that she used the term 'normal' says a great deal about her own 'disablist' assumptions.

Research Difficulties

Research difficulties constitute an important issue throughout the research process, as observed at the first meeting. The issue of the co-researchers' ability to commit remained the main concern throughout the research process. Although I started this project with six participants who agreed to participate as co-researchers, only one co-researcher continued with the project until its completion. Five co-researchers left the project for a variety of reasons, such as personal circumstances related to their studies and families and medical issues requiring treatment abroad (Saja and Abdullah withdrew because they had to travel abroad for treatment). Furthermore, Abdurrahman also decided to leave, but because of personal circumstances. Omar and Yagoub left the group without stating the reason. At the same time, however, the issue of withdrawal may be seen as a natural consequence of the practical realities of life (see the discussion below).

As Kholood was the only co-researcher who kept her commitment to the end, I discussed the issue of research difficulties with her:

Extract 12

Kholood: There were a lot of difficulties; the first one is the lack of commitment by those who worked with us… few of them were committed to our meetings… they didn't attend a lot of meetings… then, they started to withdraw.

Hussain: Why do think they were withdrawing?

Kholood: Because they think this research is not their research, so they may think that they would never benefit from it; they felt irresponsible maybe… they may say "what do I benefit… I may waste my time and he [main researcher] finishes his study". Perhaps, if we had a chance to bring other people who have better awareness, we could have had a better study than this.

Hussain: Where can we find those people?

Kholood: Maybe in university.

Hussain: Do you think that I came here to the wrong place?

Kholood: Probably… because, here, we are more interested in sports. I mean we train and we feel tired after training sessions and we want to go home directly… or even before training, our coach would keep pressing on us "come on, don't be late"… so time was limited and this was unhelpful too.

Kholood stated that the co-researchers missed many meetings and withdrew as it was not mainly their study and they might have thought they would not benefit from it and waste their time doing it. This issue may be the reason why the co-researchers ultimately withdrew from the study. Therefore, maybe they were committed but just could not make it and then were too embarrassed to tell me. The co-researchers' withdrawal was another expected issue in this type of research, as this study is mainly my own and they were participating as volunteers and were perhaps not interested or might have lost interest during the research process. They were not getting paid and I was getting a PhD (while they got nothing), so why would they be strongly committed? Unlike the projects undertaken within disability organisations, allocating payments for the co-researchers was not possible. However, not all organisations (owing to funding limitation) are committed to allocating payments to co-researchers. For example, in their inclusive project, O'Brien et al. (2014) state that the expenses of the co-researchers were covered but unlike the university researchers, they did not receive wages. However, this was a deliberate act as the researchers stated that payments would have limited the number of co-researchers engaged in the project, even though their future preferences are directed towards allocating payments for co-researchers.

The issue of what I get out of the research and what the co-researchers get out of it is related to the idea of reciprocity. As stated earlier, the co-researchers believed that they gained research knowledge and skills, yet this cannot be compared to what I got out of this research. I gained more benefits than they did, as this study helped me develop my skills as well as obtaining a doctorate and having a better career.

However, I believe that stating the names of the co-researchers would give them credit and recognition in the academic community and this would be beneficial if they wanted to carry on with disability research. Very few inclusive studies have stated the names of the non-academic disabled researchers (see, for example, Abell et al., 2007; Greenstein et al., 2015; Blyth and Docherty, 2015), whereas a large number of inclusive studies have not stated the names of the disabled co-researchers (see, for example, O'Brien, et al., 2014; Strnadová et al. 2014; Stevenson, 2014). For example, in their study which includes four learning disabled researchers and four non-disabled academic researchers, Strnadová et al. (2014) state the names of the non-disabled researchers but fail to mention the names of the disabled researchers. Some would justify this act of negligence considering the ethical procedure that emphasises the confidentiality of information of disabled people. However, if the disabled members were co-researchers (also explicitly referred to as co-researchers in the studies above), then I believe that using pseudonyms is unjustifiable. If the exclusion of the disabled co-researchers names stemmed from a particular educational system and the ethical procedures, then these procedures need to be reconsidered to refrain from blatant exclusion of the co-researchers' identification. However, if the co-researchers are not participating effectively in co-authoring (as in my case) then, at least, their real names need to be mentioned in the data extracts and the acknowledgments section. In this project, I have mentioned the real names of the co-researchers with their consent.

Furthermore, Kholood addressed a vital issue about the type of people who should be involved in this kind of project. She confirmed that I might have come to the wrong place (i.e. the sports club for disabled people) because engaging in sports was the main priority of the members. Throughout the research process, I always tried to ensure that our meeting dates and times were suitable for the co-researchers. In this extract, however, Kholood was trying to say that even the time before/after training was not really suitable, as before training, they needed to be prepared for their training well ahead of time per the instructions of their coach, and after the training sessions, they were tired. Perhaps, this was one of the reasons why they missed the meetings. Kholood was probably right: if I had approached participants who were more interested in the field of Disability Studies, the study would have had fewer drawbacks. This issue was discussed further with Kholood:

Extract 13

Hussain: Do you think it would be better to conduct the research within an organisation?

Kholood: Yeah, and this is their work [researching] and they take salary for it, so they would be obligated to do it and present it in a better form… if it is voluntary [work], most of them will be careless.

Kholood identifies another reason why the co-researchers were less interested: they were working with me as volunteers. She believed that a research study within a particular organisation where an employee's job involves research would be more appropriate and successful.

Kholood stated that it would be preferable to talk to disabled people as they understand their issues better than anyone else. She also stressed, however, that collaborative work between disabled people and non-disabled academics when researching disability is required:

Extract 14

Hussain: Do you prefer disabled people talking about their issues themselves?

Kholood: Of course, because they know more about their issues than anyone else; they know more about their needs.

Hussain: Do you prefer collaboration between non-disabled academics and disabled people, or do you prefer disabled people doing the job on their own?

Kholood: I prefer collaboration, but primarily, disabled people should talk about themselves.

This view is consistent with Barnes' (2007, p.138) suggestion that because "the [disability] movement can provide direct experiences, academics working from a disability studies perspective can provide a logical and consistent political analysis". This is at the heart of participatory and emancipatory research.

Generally, most of the participatory and inclusive projects I came across in the literature were conducted in partnership with disability organisations and even those conducted to obtain doctorates were conducted in universities, but the fieldwork was carried out in a disability organisation (see, for example, Chapman, 2005; Radermacher, 2006). Therefore, confirming Kholood's point, the problems with time restraints, commitment, and interests may be overcome or at least reduced, as within these organisations, it is the job of both the disabled people and non-disabled academics to conduct research to enhance the services for disabled people. Moreover, when the people working together are already well known to each other, the likelihood of achieving positive results is very high. Participatory action research "projects, it seems, are only really suitable in cases where all members are already well known to each other and who know they can work together" (Kitchin, 2002, p.12). In contrast, however, one could argue that there are also definite advantages of not recruiting members from within organisations. On the whole, disabled people in disability organisations are far more aware of disability rights issues, the social model, and activism and therefore will often give far more political views/responses. For example, researchers are required to show their commitment to the core principles of emancipatory research, such as the adoption of the social model of disability (Stone and Priestley, 1996; Walmsley, 2001). Therefore, any deviation by the organisation from the adoption of the social model would be considered inappropriate and erroneous (Shakespeare, 2014). This is often written up as some form of representation of disabled people's views when, in fact, it is a very small minority of very politically aware disabled people. This is one reason why some researchers recruit participants from outside these organisations. Thus, employing disabled people outside disability organisations allows diverse voices and experiences to be heard from people living with their families in homes or in institutions (Strnadová et al., 2014).

Conclusion

It is clear from the data that the main factor that motivated the co-researchers to participate with me in this project was changing the views of non-disabled people towards disabled people and disability. The co-researchers believed that people in Kuwait generally have negative attitudes towards disabled people; therefore, they saw this research as a vehicle to contribute to changing these negative views. They also believed that this project would contribute to changing societal structures and policies in Kuwait and open the door for further research.

The co-researchers also believed that participating in this project helped them to develop research skills such as preparing interview schedules, data analysis, and critical thinking skills. In line with Abell et al. (2007), O'Brien et al. (2014), Stevenson (2014) and Strnadova et al. (2014), the co-researchers developed a range of necessary research skills throughout the research process and even acquired some of the skills I, as a researcher, have. At the same time, I provided them support and allowed them to decide how they wanted to participate. For example, they welcomed the opportunity to participate with me in the data collection phase of the project (a stage that is often considered 'difficult' for 'non-academic' researchers) (Strnadova, et al. 2014). It is worth noting that, initially, the co-researchers were reticent about taking on this aspect of the process, but they became more involved over time and decided to participate not in conducting interviews but in preparing schedules for these interviews. They were more enthusiastic about participating effectively in preparing the interview schedules for the interviews conducted with the non-disabled individuals of this project. They also participated effectively in the data analysis.

Another benefit of this research project, per the co-researchers, was hearing about the experiences of disabled people who have different impairments from theirs, such as visual impairments and learning disabilities. This project also gave them an opportunity to listen to views about disabled people and disability from the non-disabled people's perspectives. This was through the interviews which were conducted with the non-disabled participants.

This project faced a number of difficulties, however, including the co-researchers' commitment and time constraints. I have discussed these difficulties in detail in the paper. As explored throughout the paper, I was aware of the power relations and the complexities that are often associated with participatory nature of research (Chapman, 2005; McClimens, 2008) throughout the process. As the principles of participatory research are based on a partnership between the researchers and the disabled participants in the entire research process (Kitchin, 2000; Walmsley, 2001), I would consider this research neither emancipatory nor fully participatory. It drew upon the spirit of participatory research, however, and the process stressed the importance of active and effective participation rather than the extent of participation. Therefore, as the co-researchers participated in some of the research process, such as preparing interview schedules and data analysis, this project may be seen as semi-participatory. However, on the other hand, the co-researchers believed that these processes would pave the way towards emancipation and open the door for further projects.

Acknowledgements

I would like to thank all the participants who participated in the project. I am very grateful for the co-researchers who helped me in completing the project: Kholood Almutairi, Saja Alazmi, Yagoub Alkhalifa, Abdurrahman Alazmi, Abdullah Alenezi, and Omar Almutairi.

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