Ethical implications for research into inclusive education in Arab societies: Reflections on the politicization of the personalized research experience

Introduction

This article reports on the outcome of a recent study into educational inclusion of children with disabilities in the Gulf Cooperation Council (GCC) member States, established in 1981. Although from an instrumental point of view the results of this research were limited, they were also highly informative, enabling the authors to reflect more deeply upon ethical issues pertaining to sensitive research in the cultural context and the wider implications of undertaking ethical research in Arab societies.

In the developing regions of the world, including and beyond that of Arab societies, the issue of inclusive education for children with special needs is taking an increasingly promising place on the education agenda. This is partially due to the pressure imposed by international movements like the Education for All (EFA) Global Action Plan, endorsed in 2000 by the United Nations Educational, Scientific and Cultural Organization (UNESCO), the United Nations Children’s Fund (UNICEF) and The World Bank (Ashencaen Crabtree and Williams, 2010; UNESCO, 2009).

Since 2000 it has become clear that sub-Saharan Africa, South and West Asia and the Arab States will fail to achieve the EFA goals by the deadline of 2005, which has now been extended to 2015 (UNESCO, 2009). Inclusive education in the countries of the GCC (United Arab Emirates [UAE], Oman, Qatar, Kuwait, Saudi Arabia and Bahrain), however, remains at a developmental stage.

Although there is an urgent need to begin to undertake a more systematic study of this topic among Arab societies, this is hampered by a paucity of data. It was in an attempt to partially bridge the knowledge gap that this study was undertaken. Accordingly, the outcomes and processes of the research process are discussed in terms of comparative perceptions towards disability and inclusive education; together with the sensitivities of collecting data in Arab societies, resurrecting a number of important implications for research.

Methodological considerations

The aim of the survey was to reveal data on the remit, scope and targeted client group of each agency, including the extent of service provision (such as opening hours, access, respite care and other forms of client and family support), as well as educational/skills training programmes.

In terms of this international study, it was decided that online survey methods were the best means to overcome the logistical problems of time and distance. The response rate for such studies is not normally high and thus to elicit the greatest number of responses certain measures were put in place (Baker, 1999). Across the GCC, 48 agencies offering rehabilitation services for children with disabilities, including educational provision or with relevant links, were finally identified and contacted. This was not a purposive sample but instead included every agency that met the above criteria.

The survey was designed to be easy to comprehend and speedy to complete, as lengthy surveys are perceived negatively, particularly when they emanate from sources without an obvious stakehold for participants. Exactly who was identified by each agency to complete the survey was difficult to ascertain; however, it was requested in the accompanying letter that a suitable representative of the organization be chosen in terms of knowledge of the mission and workings of that particular agency. The offer of publicity for participating agencies in high profile publications provided added incentive. Arguably, such identification forms an ethical issue in itself; however, it was deemed that the choice to publicize or not lay at the discretion of the agencies themselves.

An introductory letter outlining the purposes of the research, and the global as well as regional value of such data accompanied the survey. The letter and the survey were offered in both English and Arabic, with the option to respond in either language. In addition, respondents could elect to speak to our Arab representative in the UAE, who acted as both a liaison officer and qualified interpreter/translator. The survey domains (including some open-ended questions) covered resources, the perceived needs of service users, education and inclusion issues, staffing issues; and family consultation and participation.

It was hoped that sufficient safeguards had been put in place to welcome a reasonably high response rate, so it was all the more disappointing when practically no completed surveys were returned, eliciting a polite reminder a few weeks later. When this strategy failed, our Arab colleague liaised with every agency on the list to elicit a better response. Nevertheless, regrettably in the final event, only 7.1 percent of surveys were completed and returned. Most of the completed responses originated from the UAE, where the first author, and particularly our Arab colleague, already held established credentials. Unfortunately, only one agency responded to us from the remaining GCC countries and that was from a special needs resource in Oman. Thus, information was primarily gathered from the UAE rather than from across the GCC, as it is apparent that service provision for children with disabilities remains an unknown quantity.

Discussion: Perceptions towards disability in Arab societies

Completed survey responses in our study showed evidence of good practice in relation to care and support, as well as inclusion strategies. Unfortunately, overall these responses remain statistically insignificant. Thus, few generalizations can be drawn from the sample that would substantially inform our knowledge of this topic. However, the data does provide useful insights that serve to address and highlight many of the issues that are emerging on the subject of inclusion in Arab states.

Despite some changing attitudes and positive developments towards disability in the GCC and the wider Middle East, stigmatization of people with disabilities remains a serious issue. Westbrook and Legge (1993: 179) argue that ethnic groups from collectivist cultures such as Arabs primarily view the value of children in economic terms; hence due to patriarchal notions, disability in sons is considered ‘particularly tragic’. Ashencaen Crabtree (2007a) notes that in her study of family perceptions in the UAE, disability in sons was often viewed as more disappointing to fathers, than that in daughters. Other studies confirm that the birth of disabled children is considered shameful and stigmatizing (Boukhari, 2007; Khamis, 2007; Sharifzadeh, 1998). Even the very term ‘disability’ can be overtly rejected in some quarters as unacceptably demeaning (bin Huwaidi, 2008). This apparent idiosyncrasy is also noted by Ashencaen Crabtree (2007b), where in her study a mother of a wheelchair-using teenager with complex needs denies that he is actually disabled.

It should be noted, however, that discrimination towards people with disabilities is not condoned under Islam; instead Muslims are exhorted to extend care to vulnerable individuals (Ashencaen Crabtree et al., 2008; Bywaters et al., 2003). Thus, if the cause of disparaging attitudes cannot be found in religion, it is probable that the source lies instead in cultural beliefs. One paper excavated from the ‘archives’ offers an intriguing clue to this question in noting that

the Jew from Iraq (and possibly other Middle-Eastern countries) regard physical disability in the child as a punishment from heaven, and the owner of the defect is expected to be ‘kept in’ at the home of the family. (Chigier and Chigier, 1968: 314)

Commensurate with this observation, confinement within the family setting has been a common feature of life for many individuals of Arab heritage with disabilities (Ashencaen Crabtree, 2007b; Gaad, 2001; Westbrook and Legge, 1993). Cloistering practices like these, despite taking place in the home rather than in Western institutional care, conform to Finkelstein’s (1993) notion of ‘social death’. Siminski (2003), citing Oliver (1996), acknowledges the latter’s separation of the issue of physical impairment, from the lived, social experience of ‘disability’, in terms of the imposition of restrictions towards people with disabilities, and their removal from productivity and participation in civic society. It is therefore interesting to see that one survey respondent in the UAE has written a detailed vision of their agency’s attempts at ‘educating the community… preparing the community to treat the disabled person as a productive and effective person in the community’.

Molloy and Vasil (2002) locate disability critiques as co-emerging with social activism and advocacy movements, which view the prevailing social construction of disability as essentially hostile towards people with disabilities. However, although this is not the case in Lebanon (Lakkis, 2007), within the GCC vigorous social activism against the disenfranchisement of such individuals would sit uneasily in Arab states where democratic models of governance are not practiced. Therefore, while the negative connotations of disability are being reconstructed in these societies, it may not be via the form of highly politicized citizenship agenda that has shaped disability discourses and pressure groups in the West. In this respect an illuminating response in our survey highlights this point in promoting fraternal love and understanding towards people with disabilities. We would argue that this perspective is fundamentally located within Islamic frames of reference aimed at enhancing social equity and welfare (Ashencaen Crabtree et al., 2008).

Disability in Arab societies, as elsewhere, intersects across gender, ethnicity and class, militating against a disabled equality of oppression. The majority of survey respondents in our study indicated that discrimination towards girls with special needs was higher than towards boys. Additionally, one agency had put in place specific advocacy and recreational services for girls only, as they were viewed as more likely to be marginalized and devalued in UAE society.

Critically, impoverished girls and women with disabilities are the most oppressed group in patriarchal societies. The repercussions of sexist devaluation of females, in terms of social and health inequities in Arab societies, are an important area of concern, but one where data is scant. Inferences may be obliquely drawn from such observations like that of Shawky et al. (2002) who note that in Saudi Arabia, high levels of illiteracy in mothers is correlated with childhood disability. Additionally, Khandekar and Al Khabori (2004) comment that females in Oman demonstrated higher rates of visual and aural disability than among males.

Abu-Habib (2007) in turn notes that in her study of women’s experiences of disability in the Middle East, many girls were deprived of opportunities, including basic education. A tiny minority, however, had been granted more autonomy and freedom of movement than their non-disabled sisters, as they were not perceived as meriting the greater protection and surveillance that patriarchal gender norms extend to women.

The pursuit of knowledge through education for both males and females has been historically prized in Islam, although it is also true that illiteracy levels have been high in the Arab world (Haw, 1998). In some countries, such as the UAE, free State-run education and many special services are only offered to Nationals, for the army of migrant labour contributing to the nation’s wealth are barred from ever achieving citizenship. Yet, satisfyingly in our survey, all participating UAE agencies stated that they offered services to families, regardless of ethnicity, religion or socioeconomic status, but this excellent practice is by no means universal.

Reflections on the ethical implications of research in Arab societies

Frustration and disappointment coloured our first reactions to the poor response rate; however, this soon gave way to a more reflective process into why we had been so conspicuously unsuccessful at gathering data. We consequently believe that our deliberations raise some important ethical implications in terms of geopolitical issues that potentially impact on research in the countries of the Middle East.

First, we question whether the methods used were appropriate for the targeted socio-cultural context. In their study of social norms and technological ‘culturation’ in the Middle East, Loch et al. (2003: 45) consider the anthropological connection between a country’s culture and the adoption of information technology. Their conclusion is that cultural attitudes in Arab societies militate against the widespread adoption of IT mass communication. In this vein, Hill et al. (1998) reach similar conclusions, where IT strategies are less likely to be congruent with cultural attitudes governing Arab interpersonal relationships, which emphasize more direct forms of communication (Hill et al., 1998). In turn, Rosen (2005) analyses the relational holism of Arab interactions where the issue of reciprocity dominates relationships.

These observations resonate with our experiences, in terms of successful survey responses from known agencies in the UAE; and our previous research undertaken with Arab families in the GCC. This earlier study took place during the second Gulf War, where Muslim Arab families determined to test the integrity of the Western researcher before they were prepared to discuss intimate family business. Questions posed probed the researcher’s political stance in reference to the invasion of Iraq by the Western allies, as well as attitudes towards Islam and Muslims (Ashencaen Crabtree, 2007b). Candid but diplomatic responses were gracefully accepted, dissolving tensions and enabling a more equal and participatory dialogue to be established. It must be stressed, however, that research encounters with these initially sceptical families were considerably eased by the researcher’s close working partnership with an Iraqi colleague, who acted as an official interpreter, cultural guide and de facto guarantor (Ashencaen Crabtree et al., 2008).

Similar processes are attested to by the experiences of other researchers exploring the interfaces of the insider–outsider positions towards research in Arab societies. As a non-Arab American conducting research in Egypt, Herrera (2010) describes becoming accepted from the position of depersonalization through the imposition of stereotypes. The ‘insider’ position is taken by Al-Makhamreh in her study of Jordanian health settings, where ‘native’, cultural congruence enables her to overcome barriers presented to ‘foreign’ researchers (Al-Makhamreh and Lewando-Hundt, 2008).

A further consideration regarding the poor survey response rate refers to the nature of the topic itself as potentially highly sensitive, as indicated by our research findings. Additionally, it has been stated that Arab communities, whether based in the Middle East or as part of a global diaspora, regard disability as a stigmatizing condition that affects the entire family (Atshan, 2007; Boukhari, 2007; Sharifzadeh, 1998; Westbroook and Legge, 1993). It is therefore argued that stigma deters research into disability and consequently accurate data is hard to gather in Arab states (Dinero, 2002; Sartawi et al., 1999). Dinero (2002) adds that with regards to research among Palestinians the drawing up of public records of families with disabled relatives is an inhibitory factor to disclosure due to mistrust of State interests.

Research, however, does not take place in an ethical or political vacuum, but is instead mediated by conflicting power play and vested interests. The onus is on researchers to carefully consider the resonances created by research data and the process of interpretative textualization (van Maanen, 1988). Researchers working in sensitive areas, particularly as ‘outsiders’, need to retain an awareness of agendas that may seek to exploit the research enterprise. The ethical dimension of research requires us to closely consider studies, such as that of Leyser and Romi (2008), who compare attitudes towards educational inclusion issues in Israel along religious fault lines. The authors conclude that Palestinian Arabs and ultra-orthodox Jewish groups hold the least positive attitudes towards disabilities, compared to the high levels of acceptance among secular/moderate Israeli Jews. What is of particular interest is that the extremely high levels of educational disruption experienced by Palestinian teachers, children and families, caused by ongoing civil violence, are not mentioned in the study as potentially having a bearing on the findings.

Dinero (2002: 387), by contrast, draws attention to the seriously under-resourced schooling system offered to Arab children in Israel, which in the case of Bedouin minority groups is described as ‘notorious’ (Dinero, 2002: 387); where additionally State statistics record that Arab children are three times more likely to live in impoverished circumstances than Jewish ones (Dinero, 2002). Furthermore, Arab children are two to three times more likely to be diagnosed as having a mental disability compared to Jewish counterparts, conforming to Dinero’s (2002: 378) verdict that ‘the Arabs of Israel live within a culture of post-colonized minority oppression’. Research therefore is both a fundamental tool for inquiry, but so too can it be used to contribute to oppressive discourses and perceptions.

Undertaking this study has enabled us to consider some of the connections between Arab societies, the Muslim ummah (community of believers) and the linking geopolitical spaces that we inhabit. For instance, the appalling tragedy in Gaza in 2009 formed an agonizing backdrop to the completion of our work, where we were simultaneously confronted with news items reporting the horrendous casualities inflicted on the wretched population, including defenceless children. In Britain public outrage was palpable, how much greater therefore must have been the escalation of emotion in Arab states?

It is an utter delusion to imagine that attitudes in the Muslim world, fostered in anger and frustration by seemingly endless conflict, can be antiseptically contained from spilling over into other areas of human interaction, like research. In this vein, Wehbi and El-Lahib (2007: 460) make a powerful and perceptive observation. Devastating attacks inflicted on the Muslim world, which are apparently condoned or carried out by the Western democracies, jar with the censorious preaching about human rights from these self-same political powers.

As Wehbi and El-Lahib (2007) point out, such hypocrisy can hardly fail to arouse cynicism towards the West, along with rejections of alliances with international organizations that might otherwise hold aims in common, such as the petitioning for the civil rights of people with disabilities. Consequently, as British researchers, we have to conclude that not only was it completely understandable that many agencies remained aloof to our overtures, but that regrettably, given the circumstances, they had every right to do so.

It is therefore apparent that the social attitudes that have disempowered people with disabilities are changing in Arab states, with associated improvements towards equal access to resources, such as education. In the global context, however, it is also true that Muslims may be regarded as partially culpable for the reported high rates of disability that can affect these minority communities in majority cultures. Studies of Arabs in the Israeli context refer to a dominant group subtext: namely, that minority Arab groups are viewed as being reproducers of disability through traditional practices such as consanguinity, together with early and prolonged fertility patterns among Arab women (Abu-Rabia and Maroun, 2004; Dinero, 2002). The issue of consanguinity among Muslim minority communities is also prevalent in the West, but has been challenged as merely a part of many complex factors (Ashencaen Crabtree et al., 2008).

The implications of one final irony invite deeper reflection: Israeli disability activists accuse the State of contributing to the marginalization and rejection of disabled citizens in Israel, to the extent of strongly promoting a eugenics programme of genetic selection (Raz, 2004; Weiss, 2002). Muslims, by contrast, are notably reluctant to consider prenatal termination of foetuses on any grounds, including that of disability.

In Palestine, far from being perceived in a wholly negative light, physical and cognitive disability amongst Palestinian youth has come to be viewed as a heroic stigmata denoting active resistance to occupying forces (Atshan, 2007). Tragically, the violence in that region will increase the numbers of children with disabilities. The attempt of families and professionals to meet these needs will prove to be a considerable challenge. Given the focus of the Arab world on that misfortunate region, constructive Palestinian examples may serve a useful role in the reshaping of the social construction of disability in Arab states, transforming it, if need be, to one that is honoured as dynamic, socially engaged and ultimately socially valued.

In conclusion, the perspectives we have gained as ‘outsider’ researchers attempting to study Arab societies, have raised a number of questions pertinent to research endeavours. These revolve around the powerful issue of culture and how this informs attitudes towards topics considered sensitive; consequently affecting the issue of participation in research and methodological considerations. However, the influence of the geopolitical context on individual participation cannot be underestimated. Where these political struggles for hegemony, beyond that of the research–participant dyad, are so contentious and heavily overladen with stereotype and nuance, the research terrain is liable to be viewed, and indeed may become, implicated in power imbalances replicating that unequal the ontologies of participants’ lives.