Introduction

After a long and hard social/political battle by parents, disability groups, researchers and other inclusion advocates, tamariki (all children) with disabilities gained the legislated right to a high-quality inclusive education in Aotearoa New Zealand (Ministry of Education, 1996a; New Zealand Government, 1993, 2008). This means, with respect to all stages of the education system, including early childhood, that all tamariki, regardless of their disability, can attend their local educational setting and have their learning and development needs met through the provision of high-quality care and education.

Creating inclusive environments requires teachers to acknowledge the rights of tamariki with disabilities and their whānau (all family/and or extended family) to attend and fully participate in all aspects of the curriculum and activities of the regular education setting in their community (Odom, 2002). This process also requires teachers to identify and remove barriers to participation and learning for these tamariki and their whānau (Ballard, 1999), restructure cultures, policies and practices so that they respond to the diversity among tamariki and whānau within education settings and communities (Booth, Ainscow & Kingston, 2006), and support individual needs within the regular context (Corbett, 2001; see also Allan, 2008; Booth, Nes & Stromstad, 2003).

For inclusive early childhood education to be successful, early childhood teachers and managers as well as parents and members of the wider community need to embrace and practise inclusion (Booth et al., 2006; Ministry of Education, 1996b). But because, as various commentators point out (see, for example, Lyons, 2005; Minister for Disability Issues, 2001; Neilson, 2005), impairment is predominantly constructed by many in society as negatively different, parents of children without disabilities may bring with them attitudes and understandings that can lead to social exclusions, restrictions and disadvantages for tamariki with disabilities and their whānau in their early childhood setting and neighbourhood community.

In this paper, we draw on a doctoral study to highlight the attitudes and understandings of some parents of non-disabled children towards the inclusion and teaching of children with disabilities in regular early childhood settings and the consequences that resulted from the exclusionary and inclusionary constructions that these parents took up to define and understand disability and inclusion. We then offer some ideas and strategies for dialogue that may help early childhood teachers appropriately respond to this issue in their own early childhood settings and communities and progress inclusion for all (Purdue, Gordon-Burns, Rarere-Briggs, Stark, & Turnock, in press).

We acknowledge at this point that the beliefs, attitudes and values that teachers in early childhood settings hold in relation to disability and inclusion is integral to the types of experiences that tamariki with disabilities and their whānau will experience there. While the study that informs this paper showed exclusion occurring, to varying degrees, as a result of some early childhood teachers’ negative constructions and labelling of children with disabilities, our focus in this current paper is on parental attitudes, in part because some of the teachers who participated in that study indicated difficulty in progressing inclusion in their settings and communities because of negative parental attitudes. Readers interested in documentation and discussion of the study data relating to teachers’ attitudes should refer to Gordon-Burns, Purdue, Rarere-Briggs, Stark, & Turnock (in press) and Purdue et al. (in press).

Method

Data for this article came from a research project that one of the authors, Kerry, undertook on issues relating to the teaching and inclusion of children with disabilities in early childhood education in Aotearoa New Zealand (Purdue, 2004). The primary aim of this research was to study the inclusion and exclusion experiences of tamariki with disabilities and their whānau in early childhood settings, with a view to using the findings to promote dialogue, critical reflection and appropriate change in early childhood education.

The research involved three case studies. Kerry chose to use the case study approach because it provides researchers with opportunity to learn about complex social phenomena in their natural context. Yin (2003) defines a case study as an empirical inquiry that investigates a contemporary phenomenon within its real-life context when the boundaries between phenomenon and context are not clearly evident, and in which multiple sources of evidence are used. With case studies, the emphasis is on understanding how things happen and why in the natural context. The role of the researcher is to find out “What is going on here?” by focusing on the particularities of lives in context (Edwards, 2001, p. 126).

During the first case study, Kerry gathered information at full-day workshops that she offered at seven locations in the North and South Islands of New Zealand. The focus of the workshops was inclusion in early childhood education, and attendees included early childhood teachers, special education and health professionals, parents of children with disabilities and Playcentre parents. They provided information (written and verbal, generated through questionnaire and interview responses as well as discussion group discourse) on early childhood centre cultures, policies and practices with regard to tamariki with disabilities. Participants also recounted their own experiences and views about the inclusion of tamariki with disabilities in early childhood centres.

The second case study focused on a kindergarten catering for around 60 children aged between three and five years and their families which was staffed by two teachers. The participants involved in the study were a child with severe multiple disabilities and his family, his kindergarten teachers, a student teacher on teaching practice at the kindergarten, and the other families and children who attended the kindergarten during the period of the study. The childcare centre that featured in the third case study accommodated around 20 children from birth to school age and their families and was staffed by four teachers. One of the children had Down Syndrome. During both studies, Kerry was actively involved in the daily programmes of the centres for over 10 months. The research highlighted the barriers that typically impede children’s and their families’ rights to access an inclusive and high-quality early childhood education (Purdue et al., in press). One of the barriers to inclusion identified in the research was other parents’ negative understandings and attitudes towards disability and the attendance and participation of tamariki with disabilities in regular early childhood settings. In order to be effective advocates and allies for families of children with disabilities, early childhood teachers need to be aware of the types of attitudes and understandings that other parents may hold about disability and inclusion and what can be done to create environments where everyone is included for who they are. Awareness on the part of teachers, of the discourses that produce either exclusionary or inclusionary meaning and understandings about disability and the kinds of socio-cultural contexts in which these discourses are constructed and reproduced, is also important for the reason given by Siraj-Blatchford (2004, p. 144):

With the aim of gaining a clearer appreciation of parental attitudes towards the inclusion of tamariki with disabilities and their whānau in early childhood settings, and how those attitudes seemed to align with inclusionary or exclusionary situations within those settings, we (the authors) individually and collaboratively re-examined some of Kerry’s data from an interpretivist or story- telling approach. As Ferguson and Ferguson (1995) explain, people’s views, feelings, perspectives and accounts can reveal how people experience and understand disability. Interpretivism centres on the idea that “meanings are socially constructed. The value of telling stories is that this is how one discovers what the social constructions are” (Ferguson & Ferguson, 1995, p. 111). As Ballard (1997) also explains, by investigating what people say and do in their everyday lives, we reveal the complexity of the personal, cultural, ideological and situational variables that determine how disability is constructed and created within educational settings.

As each of us read through and reflected on Kerry’s data, central ideas, issues and themes began to emerge and be identified in relation to how parents of non- disabled children responded to the attendance and participation of children with disabilities in early childhood settings. We met several times to clarify and confirm our readings of the data, and to select verbatim accounts that would allow readers to judge the veracity of the interpretations made by us. We were particularly interested in drawing out statements and experiences that we consensually agreed represented both exclusive and inclusive constructions of tamariki with disabilities. This enabled us to highlight discourses of disability that are prevalent in our communities and society and the related effects on the experiences of families of children with disabilities in the early years.

This project was guided by the ethical principles of informed consent (parents/caregivers gave consent on behalf of their children), confidentiality and that no harm should come to participants. It received approval from the ethics committee of the University of Otago. Kerry was committed to trustworthy, truthful and verifiable data, and at the same time to being part of the settings as someone with a responsibility for the wellbeing of all children and adults who were part of those settings. As such, she chose to act and help, where she could, with some of the difficulties, issues and problems that arose around “inclusion” during the research. For example, she used her knowledge of early childhood education and inclusive education to support teachers and other professionals as they included and taught children with disabilities, and challenged barriers to participation and inclusion that tamariki with disabilities and their whānau experienced. Fine, Weis, Weseen and Wong (2000) write about researchers and their responsibilities when doing research for social justice. They argue that the researcher can be someone who intervenes in the field, so long as they maintain a critical interrogation of how their behaviours and actions may effect what they see as data and what meanings and interpretations they make of data. To help establish credibility Kerry made transparent how she intervened in situations, possible sources of bias and influence and used the literature on disability and inclusive education to support interpretations. She also allowed key participants involved in the kindergarten and childcare centre under study to review the case studies and challenge her interpretations.

Findings and Discussion

Kerry’s data showed that parents differed in their attitudes towards inclusion of tamariki with disabilities and their whānau in early childhood education centres. Some were supportive; many were not. Some parents of children with disabilities had to battle with other parents regarding their child’s place in the centre; they had to confront other parents whose views on disability were negative and who openly conveyed the message that children with disabilities did not belong in ordinary early childhood settings. Hence the language that some parents used to describe their efforts to have their child accepted in their communities was that of struggle, advocacy, negotiation, a constant fight. Such efforts often left the parents of tamariki with disabilities feeling angry, disillusioned, frustrated and exhausted.

When considering the reasons for and implications of these negative attitudes and constructions of disability, we observed that our thinking and discussion in relation to them closely aligned with Fine and Asch’s (1988) five stereotypical assumptions about the nature and meaning of disability that are prevalent in society. In this section, we briefly outline the nature of each of these assumptions and provide and discuss examples of commentary from case study participants pertinent to each.

Assumption 1: Children with disabilities are “special” children who need separate, specialist care and resources, and are not entitled to the same levels of participation in ordinary early childhood settings as non-labelled children. According to Barnes, Mercer, and Shakespeare (1999), disability has long been constructed as less than human, as “other”, by non-disabled people. To the non- disabled, disability means deviancy from what is considered the ideal, and this difference has been more often loathed than appreciated. As a result, disability becomes established as an inferior and devalued status, with people with disabilities being viewed as less worthy of their social, political and civil rights of citizenship (Barton, 1996). “Special” education constructs disabled children as the other by employing particular ways of thinking about children with disabilities and particular structures and practices that separate and differentiate them from their non-disabled peers (Ballard, 2004).

Fine and Asch (1988) claim that the notion of “other” stems from the attitude that disability is a biological or physiological flaw, that people with disabilities are therefore damaged, and that the impairment prevents the person from participating in society as others do: “It is often assumed that disability is located solely in biology, and thus disability is accepted uncritically as an independent variable” (p. 8). This attitude leads to the second assumption.

Assumption 2: If a disabled person experiences problems, it is the impairment that caused those problems.
This type of thinking was evident in the comments and statements made by other parents about the inclusion and teaching of tamariki with disabilities in early childhood education. Some parents believed that a regular early childhood centre might not be the right place for some children with disabilities because of the extent of their disabilities or if they felt that attendance by a child with disabilities would take the teachers’ time and attention away from, and disrupt the learning of, their children:

For Fine and Asch (1988), these comments would also hold the implication that disability is synonymous with passivity, helplessness and dependence–that a person with disability is forever the recipient, rather than ever being the provider, of help and support.

Assumption 3: People who have disabilities require, as a matter of course, help and social support.
As Thomas (2002) observes, the assumption that disabled people need help aligns with the notion that there is a need to fix or treat the impairment in order to make disabled people more “normal” so that they can participate more fully in society. People, she continues, engaged in this type of thinking, do not consider that their beliefs and practices may be the reason why the disability is disabling and so do nothing or very little to change disabling environments. As a result, individuals with disabilities can be viewed as expensive and a burden to other people and society.

This viewpoint was evident among the parents who featured in Kerry’s case study. Some parents viewed inclusion as simply a resourcing problem rather than a rights issue and showed marked opposition to inclusion if it was thought that the child with disabilities required more time, money or attention than other children, or if modifications to the curriculum and environment were needed. Some teachers reported that they found it difficult persuading parent committees to spend money on the centre environment to ensure children with disabilities had access to the centre and its programme.

In another example, some parents and teachers supportive of inclusion realised that their centre’s physical environment could be a barrier to some children’s learning and participation in curriculum and so wanted changes made. A parent in Case Study 3 commented that parents and teachers had raised this issue with the management committee, but to no avail. The parent explained that:

The examples not only reflect the prejudice, discrimination and exclusion that some children with disabilities and their families experience, but also the notion that the disabled are not a valued part of ordinary community life and society. For children with disabilities, not having equitable opportunities to learn, participate and belong with other children and families in early childhood settings and communities contributes to their remaining the “other” to non-disabled people (Barnes et al., 1999).

Assumption 4: Disabled people are “victims”.
Here, people with disabilities are seen as tragic victims, whose situation engenders social responses that tend to convey pity, guilt, embarrassment, over-protection and patronising attitudes (Barton, 1996; Danforth, 2008). Evidence from the case studies revealed that some parents of non-disabled children saw disability as a personal tragedy. For example, an early intervention teacher reported that a parent of a child with disabilities met a person in their community who said:

Oh, look, isn’t it a shame,” and this parent said, “Well, what’s a shame?” He couldn’t figure out what was …[until], “Oh, that’s right, his child has got Down Syndrome.” (Early intervention teacher, Case Study 3)

Several parents of children without disabilities said that they felt sorry for children with disabilities, and used adjectives such as “amazing” when referring to the parents of these children because they were “coping so well” with what they assumed was an “awful situation”.

According to Barton (1996) and Danforth (2008), these attitudes also stem from a fear of people with disabilities and disability. This fear was evident in Kerry’s research. Some parents of non-disabled children expressed or displayed not only fear but also uncertainty and discomfort around children with disabilities and their families. These parents tended, in turn, to question whether or not children with disabilities should attend regular early childhood settings. One parent interviewed said:

In other examples, a parent reported that a family whose child with disabilities had previously attended the centre (Case Study 3) had felt ostracised “not by the teachers, not by the centre but by other mothers. No one would acknowledge her child.” And, another parent of a child with a disability discovered that parents of other children attending her child’s centre were planning to “get a petition to stop her child going there.” She told centre staff of these parents’ intention:

This parent, when asked if she had noticed if other parents had reacted in any way to her child’s enrolment and attendance at the centre, said:

Assumption 5: Disability is the defining feature of the disabled person’s existence and experience.
More specifically, this assumption holds that “disability is central to the disabled person's self-concept, self-definition, social comparisons, and reference groups” (Fine & Asch, 1988, p. 11). This assumption fails to recognise that people have more than a single identity and, as such, may identify with groups that have nothing to do with disability. Furthermore, disabling social/cultural environments can affect the identities of people with disabilities, to the extent that their sense of social and political possibilities becomes limited (Barton, 1996; Lyons, 2005).

A parent of a child with disabilities who featured in Case Study 2 described an experience where a person in her community said to her that her child should be attending a special unit “to help keep them open”. Shocked by this, she replied:

In another example, a child with disabilities and a peer were playing alongside one another with some blocks. The parent of the peer was sitting beside them. The following conversation took place:

In another incident, a parent (Case Study 1) described how her sister’s social supports and friends diminished because they had a child with a disability:

Implications and Suggestion for Teachers

The assumptions about and attitudes towards disability held by parents in Kerry's research illustrate how exclusionary attitudes and actions can make it difficult for tamariki with disabilities and their whānau to take up their right to participate in mainstream education. In this section, we focus on how teachers and managers in early childhood education settings can help counter these assumptions and attitudes. We also, in this regard, draw, where appropriate, on comments and experiences of those parents in Kerry’s research who held more inclusive attitudes towards the participation of tamariki with disabilities in those settings.

Slee (2004) argues that “closing the gap” for people with disabilities who are presently excluded from many aspects of everyday life requires addressing what he terms the “deep culture of exclusion” (Slee, 1997, p. 412) that pervades many societies. Researchers, such as Slee, who are working in the area of inclusive education, challenge those responsible for delivering early childhood education to see themselves as active change agents, willing and able to confront and challenge negative stereotypes, misperceptions and oppressive, discriminatory discourses and behaviour, and to support and advocate for tamariki with disabilities and their whānau (see also MacNaughton, 2005; Ministry of Education, 1996b). With this thinking and the findings of our study in mind, we offer the following suggestions.

Teachers need to position themselves within discourses of disability that promote socially just environments
Negative constructions of disability that have been created by medical, special education, lay, welfarist and other cultural discourses can be challenged and refuted (Neilson, 2005). Kerry’s research highlighted that it is important for early childhood teachers to position themselves within inclusionary discourses of disability and, in particular, use resistant discourses embedded within socio- cultural and rights models to change perceptions about disability and form new understandings likely to foster more inclusive attitudes and behaviours in their early childhood communities. Because a socio-cultural model emphasises that society creates the problems and difficulties faced by people with disabilities, it has given them and their families the realisation that most of their difficulties are socially and culturally constructed and created (Macartney, 2008a, 2008b; Neilson, 2005). By implication, this has empowered families and their allies to challenge and resist disabling ideas and associated actions that infringe their rights and deny them equity and justice.

A good many of the parents of children with disabilities who featured in Kerry’s research resisted other parents’ negative attitudes to their child’s attendance in the early childhood setting by asserting their child’s legal right to participate in their local community and advocated for people to change their views so that they did not deny families their rights. In some cases, teachers, too, actively worked to promote acceptance and inclusion of children with disabilities by talking with other parents about the attendance and participation of children with disabilities at the centre, and emphasising rights, belonging and learning opportunities for all.

Teachers and other parents supportive of inclusion challenged views and attitudes that could perpetuate exclusion and discrimination and modelled inclusion in the centre and community. One parent (Case Study 2) told Kerry that she had worked in an institution for 14 years with people who had disabilities. Because of what she witnessed there (people being treated in “quite a negative way”), she developed a firm stance. Everybody, she said,

Because of her experiences, this parent had defined people with disabilities as human (like us) to be positively valued and therefore to be accepted and included, a viewpoint that fits Bogdan and Taylor’s (1992) construction of humanness. When considered from the perspective of inclusive practice with respect to children with disabilities, this construction emphasises the need to see the disabled person as an individual with his or her own distinct patterns of thinking, personality, likes and dislikes, feelings, and unique life history–as someone who contributes valuably to relationships, and who holds his or her own place in society. The following comment from a parent (Case Study 3) exemplifies this thinking.

Teachers need to ensure that individual centre policies reflect the rights of all to a quality inclusive early childhood education
If early childhood centre policies reflect a discourse in which disability is a problem or burden for teachers and include clauses of conditionality and other statements mainly focused on the technical requirements needed to accommodate this difference, then this can portray a message to other parents that the attendance and participation of tamariki with disabilities in early childhood education is problematic, difficult to manage, time consuming and expensive (Allan, 2008; Slee, 1996).

Instead, early childhood centre policies need to reflect the legislated rights of all children and whānau to access and participate in early childhood settings, and to receive an equitable and high-quality education. Having available centre policies that promote the centre’s positive understanding and position towards inclusion may not only help reduce fears or concerns that parents of children with disabilities have but also send a clear message to families of non-disabled children about the centre’s philosophy on inclusion and the type of attitude that is acceptable at the centre towards difference and diversity.

We saw evidence in Kerry’s study of parents supporting this type of message. They openly acknowledged that it was the children’s and families’ right to attend the early childhood education provision of their choice. In those centres where other parents (or the majority of parents) in centres supported inclusion, parents of children with disabilities described how they felt welcomed, supported and included in their early childhood settings and communities. They formed positive relationships and friendships with other families, which provided them with opportunities and supports needed to grow and develop in their communities. As such, early childhood education was a valuable and enjoyable experience.

Teachers need to provide positive role models for other parents
We saw evidence in Kerry’s research that a positive approach on the part of centres to inclusion and teacher modelling of inclusive language and practice helped parents of non-disabled children reflect on their perceptions and take up positions more supportive of the rights of all children and their families. Also apparent was the time typically needed for a centre to challenge and deconstruct some of the negative constructions that some parents held. Families of disabled children, however, should not have to wait for society to “get prepared” to accept and include their children (Odom, 2002; Purdue, 2009). It is essential that teachers promote, from the time a centre opens, an environment that respects and accepts diversity.

Teachers need to be good leaders and address issues, concerns and questions from parents
Providing appropriate support and information to parents of non-disabled children at an early stage may prevent exclusion and discrimination from occurring within centres and communities. Answering parents’ questions and providing them with information (while maintaining a family’s right to privacy and confidentiality) is important to avoid or alleviate the negative attitudes and concerns spoken about earlier. Queries about the impact of having tamariki with disabilities in the early childhood setting and the effect this may have educationally on non-disabled children is one that the parents in Kerry’s study appeared to be most concerned about. One way that teachers can address this question is to highlight for parents the educational, social and other benefits of inclusion.

Teachers need to promote an inclusive centre environment
Teachers can do this by ensuring that their centre environments (both indoors and outdoors) are accessible and meet the mobility and access requirements of tamariki with disabilities and their whānau. Because constructions of disability (often evident in the media) that medicalise, patronise, and dehumanise contribute to the exclusion of people with disabilities within society, early childhood teachers need to ensure centre resources (for example, puzzles, books, posters, other play materials) promote quite different images and messages, in particular, that disability is an ordinary aspect of life (Hodkinson & Vickerman, 2009). Teachers also need to ensure that teaching practices signal to other parents that it is not children with disabilities and their families who need to be fixed and changed (MacArthur, Purdue & Ballard, 2003), and to be aware of the terminology they use when talking about disability and children with disabilities (Foreman, 2008).

Teachers need to listen to the voices of tamariki with disabilities and their whānau
Previously silenced voices of people with disabilities and their families are increasingly being heard in their communities, the media and other social and political circles (see, for example, Brown, 1999; Donald Beasley Institute, 1997; Macartney, 2008b; Radio New Zealand, 2002; Van Hove et al., 2009). Listening to these people’s stories and experiences not only exposes issues of exclusion and oppression but informs society about the kind of socio-cultural and political transformations required to redress the inequalities and injustices these people have experienced. In early childhood education, then, it is important that teachers work in partnership with parents of children with disabilities, as they are required to do for all parents and whānau attending the service, to find out how their early childhood experience could be improved and enhanced and how their dreams and aspirations for their children can be supported and realised (Ministry of Education, 1996b).

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