Hidden
Voices: Hidden Voices: Young People with Disabilities Speak about their
Second Level Schooling Prepared by Máirín Kenny PhD, Eileen McNeela B.Ed., MBA, Michael Shevlin PhD, Tom Daly B.Ed., MA. ‘People don’t understand, and you can’t really expect them to either because there is nothing out there to tell them about this’ Table of contents Section 1: Methodology, Literature,
Policy Documents Section 3: Life and Work Outside School Section 4: Lessons
to be learned Section 5: Conclusions and Recommendations
About the team. Eileen Mc Neela is a former primary school teacher. A research consultant since 1996, she has been involved in evaluating and researching Government and EU funded education and training projects in Ireland. One of her current projects involves identifying policy implications relating to lifelong learning for people with disabilities, emerging from the Horizon employment programmes. Dr. Michael Shevlin, a former second-level teacher, collaborated with St. Michael’s House in initiating the ‘Links’ programme for mainstream and special schools. Now a member of staff of the Department of Education, Trinity College, Dublin, he lectures on special needs. Tom Daly was a mainstream teacher in Boherbue Comprehensive School, Co. Cork, when he initiated the SOLAS project that provides information technology supports for students with physical disabilities in mainstream second level schools. He acted as educational consultant to the South West Regional Authority in the development of the DATE project and is currently managing the combined DATE and SOLAS Projects. Rosemary O'Leary graduated from UCC with a BA (Hons) in Applied Psychology. She worked on the DATE Project as a researcher and teacher co-ordinator, and is enrolled in the Psychology Society of Ireland's Professional Diploma in Educational Psychology. The team wishes to extend its thanks to all the interview participants, true project partners, who gave so much of their time and thought to this project. Thanks to the South West Regional Authority and the DATE Project who supported this research concept to its realisation, through funding and commitment of resources. Thanks also to agencies who supported the research process, through contacting potential participants, and providing interview spaces and planning resources. Finally, two people helped at key points in the analytic process. Thanks to Stephanie Loughman, PhD student, for discussion of issues, and indicators of useful literature. Thanks also to Sorcha Hyland, MA, for editing and commentary on the analysis. ‘Hidden Voices’: Rationale
for this Project It is said that no children are consulted in relation to how schools operate (Wade and Moore, 1993). However, in a sense the majority need no longer talk because they have already been heard on fundamentals. They do not have to ascertain if toilets will be accessible to them. They do not have to work on finding ways of getting to the first floor for classes (they can assume there will be stairs), or of getting involved in class activities (the equipment arrives conventionally designed), or of ensuring that they can hear, see, and record what is being taught. They do not have to worry about how their repeated requests for help will affect how they are perceived by teachers or peers. Little need be said when so much can be assumed. Students with disabilities will know they have been heard when they do not need to speak in relation to such fundamentals either. Where physical provision and pedagogy promote involvement, the need for special attention to disabilities is reduced. Then all students can seek to be heard in relation to the content and processes the education system offers to or imposes on all. The Irish education system was developed on the basis of a narrowly
defined concept of normality. In mainstream schools what the non-disabled majority
required was deemed to suffice for all. This assumption was facilitated by separate
provision for people with disabilities. However, with the introduction of a national
policy of integration, this paradigm of normality no longer suffices. The material
environment, academic processes, and social relations in schools are all proving
inadequate to meet the needs of the full spectrum of students. Hence this ‘Hidden
Voices’ exploratory survey. ‘Hidden Voices’: Aim and objectives Objectives: Summary Insights Within this inadequate systemic context, quality of local policy and resource provision were erratic and highly dependent on the local education partners – teachers, parents, local management, and disabled students’ able-bodied peers. In this ‘Hidden Voices’ survey, participants’ experience highlights intersecting difficulties in the physical, the academic and the social environment. These pointed to underlying systemic inadequacies, and further, to inadequacies in the paradigm of normality. In the physical/built environment, for instance, supports such as ramps and handrails were not guaranteed for those who found stairs difficult. Building structures often intersected with time-tabling, putting tremendous pressure on disabled students where rapid movement from one classroom to another was required. Specific learning-related assistive technologies were only erratically available. Academic access, access to the curriculum, was also dependent on material and non-material factors. In class activities such as Science, that required equipment, availability of adapted equipment depended on local school and teacher insight, and on resources. In all subject areas, teachers were not trained to recognise disabilities and adapt their teaching practice appropriately. Social access, or the development of relationships with teachers and peers, was skewed and inhibited by all of the above. Because the necessary physical and personnel supports were lacking, many participants, in their efforts to achieve inclusion in school life, had to place great strain on their relationships with peers and teachers. They had to ask constantly for help and were loath to approach the same person too often. Lacking personal assistants, participants with specific disabilities had to rely on peers and teachers for assistance with personal needs. Teachers’ perceptions of participants’ potential were highly significant: some globalised their difficulty, categorising the student wholly in terms of her/his disability, or conflating a range of disabilities (‘if you have a physical disability you also have a learning one’). So, the absence of supports meant that the person’s disability took centre stage in relationships. Participants wanted to live a normal school life, but oversight meant that they had to live a ‘disabled’ one. This deflated their ambitions and self-esteem, leading to a sense of isolation. The absence of supports also meant that students’ disappointment and anger at system failure was directed at the service deliverers, the teachers, who in the pursuit of their professional duties, were themselves failed by the system. A new paradigm is needed: it is normal for the student population, reflecting society in general, to include a percentage of members with disabilities. Education provision flowing from such an inclusive paradigm would necessitate, at all levels, commitment to developing policy, and providing training, materials and other resources necessary to ensure that all could lead a normal school life. In sum, participants discussions predominately centred on the following: Issues relating to representation, to being heard, all focussed on the systemic. Participants wanted representation by mandated professionals, and their entitlements protected in law. And, arising from the inadequacies in systemic preparedness to include them -participants experienced all obstacles to access and academic progress, as refracted through the lens of relationships. Recommendations for change arising from these insights pertain to all levels and facets of education provision (for instance, excellent national policy and teacher training can be ‘uncoupled’ or rendered ineffectual by middle management oversight). Resources must be put in place to ensure effective implementation of a new vision, which will enable all children, disabled or not, to enter the education system and progress to the best of their ability, as normal members of society. Participants’ insights prove the need for an inclusive education philosophy, recognising the need for full curriculum access for all students including those with disabilities (Carpenter et al., 1996). The following is a general summary of recommendations. For more detailed expansions of these, see Chapter 5. Legislation, on foot of the 1998 Education Act, to promote and protect the educational entitlements of people with disabilities (for a brief review of relevant elements in of the Act, see Appendix). Promotion and protection of equal access for disabled people in policy statements at all levels of the system. Provision of all necessary supports, at all levels from pre-school to adult education, to ensure that students with disabilities can not only access, but are included in, all facets of the education process, physical, academic, and social. Disability awareness training for all involved in delivering education provision, from national administrators, to local voluntary managerial personnel, to teachers and other support staff in schools. Training in diagnostic and specialised pedagogic skills for teaching staff. As part of developments such as the IT2000 programme, training and regular updating for all teachers, beginning with remedial and resource teachers and guidance counsellors, in the range and applications of assistive technologies. Section 1:
Methodology, Literature, Policy Documents Participant recruitment To ensure productive focus, it was decided to target young adults who were enrolled in further education and training institutions, or who had connections with organisations providing services for people with disabilities (regarding people who have dropped out of the education network, see below). A group format for interviews was selected, for the practical purpose of maximising the numbers who could participate and, more importantly, to introduce the dynamic of mutual interaction among participants. A compromise between cluster and focus groups was decided on as the best option, given that the population in question is so widely dispersed. Groups would have to include people with a wide range of disabilities, male and female, urban and rural. Recruitment process: Participants were recruited via a Regional Authority, a national organisation established to promote access for young people with disabilities in third level education, and a specialised third level college. Notices were sent out to the organisations’ clients, explaining what the project was about and how it would be conducted and inviting participation. Numbers: All who came forward were included. There were three groups. The rural group numbered four; the specialised college group (urban) numbered seven; the third level group (urban) numbered four; and one rural participant who corresponded by e-mail. Of the total of sixteen, six were male, ten female. (see below for comment on how group composition met criteria listed above). Interview procedure Transcripts of these discussions were analysed (for comment on analytical procedures, see below). From this was drawn up an interim statement of findings and a modified checklist, which was then used in the second phase interviews. Participants were invited if they wished, to critique and to expand this interim review and analysis of their experience based on the first set of interviews.
The interviews transcribed; the transcript text was coded, using a computer software Atlasti, 4.1 for Windows 95, a text interpretation, text management and theory building tool. Fifty four codes were identified; often the same stretch of multi-referential text was filed under several code titles. Words or phrases to serve as code titles were drawn from the data, or were minimal summaries of it. The codes were grouped into ‘super-codes’. This process was challenged by coding the data under three general headings - self, other, and situation – followed by subdivisions. Harmonies and divergences between bottom-up and top-down procedures generated further insights, and tested the validity of both codings. Final codings captured insights from both, and most effectively revealed themes and interactions between them in interview talk. Procedural validity Though their absence seems too self-explanatory to be noted, it is significant that the following voices were not heard: people who had no interest in matters academic; people who were totally satisfied with their academic career; and people who for whatever reason were ‘alienated’ and did not want to or could not talk about their time in school. Those who are satisfied with their lives may not feel a need to be heard, though it would be interesting to assess why they are content, in the interests of replicating those conditions for others. However, the system needs to hear those who have been pushed out, for the opposite and arguably more urgent reason. These varieties of experience require documentation, but in a different project. The gender balance in all groups was the reverse of that obtaining in the general population of people with disabilities. Females outnumbered males in the interview group by two to one. This may have been purely circumstantial, a random outcome of sample size. However, it may also suggest a question for further research: did the research participant body actually reflect the career paths of the wider population - do more males than females with disabilities either do very well or drop out completely (and not feel the need or desire to join a research project)? There seemed to be some evidence of variations experience, relating to the urban-rural continuum, and this also could be researched further. Variations may be due to how factors such as distance and access to suitable transport impact on opportunities for socialising and for diversifying educational experience. Participants as research partners The two-phase structure also provided opportunity for participants to evaluate their own accounts and to critique how researchers registered these. Some modifications were introduced into both, but there was a high level of consistency between participants’ first and second phase accounts and evaluations. Consultation, in this study, was both a tool and a topic. As a survey tool, consultation through interview yielded powerfully illuminating data. The process was also valued by participants, as evidenced by their return for the phase two sessions. This study validates the argument for consulting students regarding their own education (Lewis and Lindsay, 2000). Both in their accounts of their experience and in their prescriptive analysis, participants in this survey provided new insights into the blocks and possibilities inherent in the existing putatively inclusive system, and have identified how simple but profound the required changes are. More importantly, the issue of returning findings to research participants is of ethical significance . An interview experience, and processing it, is part of the life of the participant and can have diverse knock-on effects. Each interview provided participants with a context wherein they could reflect on their experience, place it in a wider context, and develop their thinking about issues that affected them. The two-phase structure offered a chance to push thinking further, and no doubt the prospect of it impacted on how participants processed their experience in the first phase. They valued their role as research partners, and wanted to know if the Report would promote effective inclusion policy and practice in the school system. Interview focus and
participants’ experience Participants, like many young people, were rigorous critics of their schools and teachers. However, experience relating to their disabilities intersected with their age-appropriate perceptions. Their presence highlighted how schools are fundamentally designed to meet majority needs. An unintended outcome is that minorities’ needs are overlooked. This is experienced by the minority with disabilities as exclusion, or special positive or negative treatment. Such treatment, whether conscious or unconscious, painfully sharpened participants’ experience of interactions with school, teachers, and peers. Validation of findings Coherence in discussion of themes within the research data offers a test of validity; consistency between themes that emerged, and themes identified in literature (see below) also indicate that the experiences registered in this survey were shared across a broad spectrum. Internal coherence: The e-mail correspondent asked to have the checklist sent to him. His written response could have been knitted into any of the three interviews - an indicator, if a sole one, that any ‘bubble effect’ (a mood that can develop by virtue of the group dynamic, and skew participants’ orientation ) was minimal in the group discussions. There was also high internal coherence between the topics that arose, and treatments of them in the three groups’ discussions. ‘Deviant cases’ occurred. These are actions or events which seem to give the lie to the speakers’ dominant argument, but which, on analysis, prove to be contradictions caused by the very factors around which participants organise their argument. For instance, all the participants in one group were enrolled in a specialised third level college. Their seemingly contradictory action, going from mainstream to special provision when they all asserted that they wanted mainstream schooling, validates their critique of the mainstream educational process (this will be expanded in the data analysis section). Endorsement in research literature: One test of the validity of this survey’s findings is the extent to which they harmonise with findings in other studies. Parallels are to be found in academic literature (see review below). Two studies of integration in the Irish setting are specifically relevant to this survey. 1.2: Literature Review Gradually, it was recognised that disability was often experienced in terms of social restriction (Walmsley, 1997). The concept of the ‘disabling environment’ recognises the complex relationship between the disabled individual and his/her environment and the ways in which physical and attitudinal barriers can prevent full participation in society (Finkelstein and Stuart, 1996). This historical experience of exclusion which had often been supported by legislation was vigorously challenged through campaigns by people with disabilities for rights to ‘common and equal citizenship’ (Quinn, 1993). Disabled people have to contend with a range of public perceptions and attitudes over which they have little control (Tilstone, 1991). The characterisation of disabled people as 'pitiable', 'pathetic', 'invalid', 'helpless', 'dependent' has been evident (Hevey, 1993). The actual reality for individuals is substantially different. Weinberg (1988) discovered that the feelings of disabled people about being disabled did not conform to the common stereotype of disabled people as unhappy and bitter. In fact, the majority had adapted to what was admittedly a difficult situation and their feelings about being disabled ranged along a continuum from bitterness, acceptance to celebration. Influenced by these disabling images, societal attitudes can represent the greatest obstacle to the full inclusion of disabled people in the community (Forest, 1991). By emphasising what is different about disability and ascribing a dependent role to disabled people these images tend to obscure the common interdependence people experience in their everyday lives (Corbett, 1997). Societal attitudes towards intellectually disabled people have been characterised by confusion, ambiguity and a modicum of good will. Not surprisingly, mainstream pupils exhibit an ambiguity, not dissimilar to their elders, in regard to their disabled counterparts (Lewis, 1995). Naturally, these difficulties can cause problems in interactions between young people with disabilities and their able-bodied peers. A number of studies have highlighted pupils’ preference for distant rather than intimate contact with their disabled peers (Fichten, 1988, Gash, 1993, Hazzard, 1983). Pupils with disabilities tend to attribute great importance to peer relations which appear to be vital to their self-concept at school (Allodi, 2000). Wade and Moore (1992) indicate that disabled pupils often think that their disabilities render them different from their peers. In addition, they often have to adopt mature strategies to cope with unkindness from their able-bodied peers. Integration of Pupils With
Disabilities At the school level, integration involves considerable changes in organisational structures, curriculum and teaching methodology (Meijer, 1994). A ‘whole school approach’ is required which recognises that the curricular challenge posed by integration is shared by all teachers (Strangvik, 1997). An essential element in fostering the inclusion of pupils with disabilities involves the preparation of these pupils for functioning in an integrated post-school environment (Gaylord-Ross, 1992). In integrated situations pupils with disabilities can avail of the opportunity to develop the social skills necessary to function productively in the ‘real world’ after school (Sailor, 1991). Furthermore, Murray-Seegert (1989), reported that reciprocal interactions can occur between pupils with disabilities and their able bodied peers when ‘the contact situation resulted in mutual though not necessarily similar benefits’ (1989:89). Mutual benefits include the opportunity for pupils to become each other's 'allies' through participating in group activities which implies pupil interdependence rather than a charity-based, dependency role (Biklen et al., 1989). Thomas et al. (1998) conclude that ensuring the success of peer relationships would be facilitated through the structuring of group work and student partnering to include co-operative group work and peer tutoring. Research on inclusion within an Irish context has been extremely limited. As a result, it is almost impossible to provide a comprehensive overview of inclusion practices. Systematic link programmes involving pupils from mainstream and special schools have developed despite the parallel nature of mainstream and special educational provision (Shevlin and O’ Moore, 2000). It is more difficult to ascertain the experiences of disabled children within integrated settings. Detailed policy documents have addressed the issue of the resourcing required for integrated provision (SERC, 1993), however, it is evident that the systemic barriers to inclusion have not been radically challenged. As Colgan, (1998) points out no infrastructure exists to support inclusion. O’Keeffe's study (1997) is one of the few to document the mainstream school careers of people with a sensory disability in Ireland. He used more extensive, less in-depth methods to conduct a national survey of education provision for visually impaired young people: his findings closely echo and are amplified by those of this survey. Insights developed from mainstream practice led Daly (1999) to hypothesize that the isolation and dispersal of pupils with disabilities throughout the mainstream system, without adequate supports or an understanding of their needs, created a need for a specific pedagogical intervention. An action research study, named SOLAS, piloted the development of this through an internet-based digital network. His study concludes that, in a significant number of cases, mainstream schooling results in a ‘negative educational experience’ (p. 205) for pupils with disabilities. It also identifies the need for an in-depth analysis of the realities of the experiences of these pupils in mainstream classes, in order to gauge levels of inclusion and to reveal the basis from which appropriate responses could be developed. Hence this exploratory survey, to record the hidden voices of such pupils The project in action supported the validity of his original insight. Also, it demonstrated the usefulness of information and communication technologies in addressing these difficulties and releasing students’ learning potential. However, the wider context of the educational system, including its existing values and structures, along with institutional resistance to change, greatly reduces the likelihood of adaptation of the project methodology. Analysis of recent policy documents will tend to support these conclusions. Policy in Ireland: Overview The SERC Report established the concept of a continuum of provision in official policy. But it conceptualises disabilities inadequately, and proposed locational integration non-problematically, underestimating the complexity involved in achieving true inclusion (Colgan, 1994). Despite this reservation, the SERC Report has had a major influence on policy developments. The White Paper on Education (1995) endorses the main resource provisions recommended in the SERC Report. It recommends that the schools psychological service ‘be progressively expanded to ensure that every student with learning and behavioural difficulties has access to help’ (p. 55). It proposed a policy of positive intervention to allow flexible access to students in accordance with their need (p. 24), and suggested that the NCCA establish curriculum development projects for students with disabilities in mainstream schools (p. 57). The Report Commission on the Status of People with Disabilities (1993) rejects personal and medical models of disability. It adopts a social model and advocated responses from a ‘civil rights perspective’, recognising that ‘equality is a key principle of the human rights approach’ (p. 8). This highlights the patent inadequacy of the incremental, piecemeal approach that characterised education provision hitherto, and failed to recognise the issue of the fundamental right to education of children with disabilities. The Commission recommended that students with disabilities should be legally entitled to all necessary assistive technology, personal assistance, and forms of therapy, to enable them to access whatever programme is on offer. The 1998 Education Act provides a statutory basis for legislation, policy and practice in relation to all education provision. The Act provides a level of principled commitment to equity in relation to students with disabilities. However, detailed stipulations relating to students with specific disabilities are not provided. For this a comprehensive body of legislation based on the Act, arising from proceedings in the Dáil and the courts, is required. Perhaps indicative of this need is the fact that no reference is made to adjusted provision for candidates with disabilities in Part VIII (Examinations). It refers to preparation and marking of ‘papers or materials’ (p. 38), but ‘materials’ might simply refer to elements such as experimental or mixed media work. The Expert Advisory Group on Certificate Examinations reported to the Minister for Education and Science on arrangements for assessment of students with special needs (2000). Principle 3 of the Report states that ‘Special arrangements should not put the integrity, status, or reputation of the examination at risk’. However, in relation to more significant permitted modifications to examination procedures, Principle 12 applies:
If the integrity of the system has been maintained, there should be no need for qualifying notes on certificates (Daly, 2000); if the changes are such as to interfere with this integrity, the examination should classified as a different procedure. As the authors note, efforts to combine universalistic aims and procedures with measures to meet particular needs ‘inevitably give rise to conflict’ (p. 1). This highlights how the presence of students with disabilities challenges the system ethos. The NCCA discussion document is an overview of general policy and provision in relation to children with special needs, but with main reference to learning difficulties. It fails to address systemic issues; the deficit model of the child is still in evidence. There is some mention of whole-school approaches, and of pedagogical development but main focus is on the child as having a deficit. Language and concepts are inclusive but it doesn’t fully address implications in terms of curriculum provision and access to it. Access is still considered primarily in terms of content. It opens the door to fuller consideration of all the issues but it is not a definitive document. In spite of this background, there is a general consensus that the provision for pupils with disabilities is very inadequate, both in the development of structures and actual delivery. Developments have been ad hoc and erratic. The ‘rhetoric-reality gap’ (West and Ainscow, 1991: 90) is enormous and the situation on the ground remains little changed in many cases. Section 2: Life and Work in School 2.1: Introduction to Data analysis The young people who participated in these interview discussions wanted to live and learn among their peers in mainstream second level schools: they wanted normality. So, their preferred discourse was a ‘discourse of normality’: they sought to talk about issues as events on their life path as young people, rather than in disability-related terms. This proved relatively simple in relation to the first topic, how they chose their school: like their peers, they looked at friends’ choices, parents’ preferences, and proximity. But after that choice-of-school step, their discourse of normality was constantly intersected with one of disability. Academic ambitions of necessity drew up issues relating to classroom access, assistive technology, teacher/school perceptions and expectations, and peer relations. In short, others’ perceptions, and system responses to people’s disabilities, intervened. By far the most of the interview talk was about relationships – about how school staff (Principals, guidance counsellors, and above all, teachers) perceived and dealt with students with disabilities and their parents. This is not surprising: experience of the schooling process - from hearing about or taking part in trips, to being or not being called on to read in class - is substantially mediated through the teacher-student relationship. Here, some insights from Goffman’s analysis of exclusion (1983) are relevant. Exclusion arises from how and why society categorises people. Through social interaction over time, some categories come to be generally recognised as within ‘normal’ range, and some non-conforming categories are defined as ‘other’. Social exchanges can be unthinkingly engaged in, as long as the people involved are ‘normal’. Widely diverse groups who fail the normality test share a common experience of being excluded, discredited. Exclusion depends, not on what exactly is different about the excluded ones, but on the fact that they disturb the majority’s routine, comfortable, ‘normal’ interactions. So, to discuss exclusion (and how to undo it), ‘a language of relationships, not attributes, is really needed’. Participants talked mainly, not about their performance in any subject, or about their use of assistive technology, but about relationships with teachers, classmates, and other ‘education partners’. And, as is not uncommon, troubles talk was prominent. This was arguably warranted. Some experiences recorded in this survey may not be typical, even of the greater part of a given speakers’ own school experience; but significance cannot be measured thus. Whether or not empowering teachers, or hostile/negative ones, had much actual contact with the speakers, their impact was highly significant for many: they could inspire or defeat a student in relation to far more than their own subject area. But, as will be seen, the majority of teachers, like the generality of society, were well-meaning but forgetful or unthinking, underestimating the depth of isolation and struggle that saturated so much of these students’ school experience. In participant talk, provider perceptions of and attitudes towards disabilities were inextricably bound up with all facets of ‘school as process’. As noted already, school policy or ethos as such was not discussed, but policy strengths and lacunae can be deduced from discussion of the issues that did arise. Class placement, at entry and through the participants’ school careers, and point-of-exit examinations, bracketed and shaped life in school, and life after. Staff student relations and access to curricular and extra-curricular areas come between these brackets. Discussion of each issue in this section is essentially a discussion of how it was handled by the professionals, and how that was experienced by the students. The two do not necessarily match. The need for disability awareness, and comprehensive policy and commitment of material and personnel resources to translate it into appropriate, consistent practice, is the crux of the issue, and runs through all sections. ‘Disability awareness’ does not just, or even primarily denote a state of mind on the part of service deliverers – in this case, schools and teachers. It denotes preparedness at all levels of the education system to ensure that people with disabilities can get into, get around and get on (academically and socially) in any education institution - can access their normal entitlements. Section Structure 2.2: Access to
school: Entry and mobility issues Evidence in the data of formal inclusionary school ethos was slight. Positive action occurred mainly in the informal domain; and dominant notes were of kindness and even pity, charity, grace and favour. All speakers encountered school administrators and teachers who wanted to be positive. Most participants had had highly valued empowering interactions with teachers; most also encountered hostility and oversight. In the absence of clearly conceptualised, formally registered policy, positive responses were not guaranteed, and their quality was not always appropriate. The challenges inherent in transfer from primary to second level and onwards for any student, intersect with specific challenges for those with disabilities. Participants spoke of difficulty getting around in bigger buildings, moving from place to place for different social and academic activities; and about the struggle to engage with class work, using mainly the means designed for the majority. They also spoke about how they had to depend on their friends to help them to get around, and this dependency impinged on relationships with peers. Mobility in this context refers both to accessing the built environment, and to accessing the curriculum. Needs are on a continuum, from the physical (such as lifts) to the processual (such as help with note taking). Choice
of school: getting into ‘the school around the corner’
As illustrated in the last quotation, when choice was linked to academic issues this reference was usually paired with reference to disability. But dominant perceptions of disability could then intervene, to inhibit the struggle to maintain a discourse of normality:
This child’s ambitions (and her parents’ vision for her) collided with perceptions of her in the ‘follow-on school’, where she found herself categorised entirely in terms of her disability. No one else mentioned point-of-entry barriers of this type, but as will be seen, many encountered them within the school. At this stage also, it emerges that access was not simply a physical question; and even in its most physical aspects, it was shaped by policy, perceptions and relationships. So, school ethos sets the stage for the remainder of the report. School ethos
This speaker appreciated the Principal’s kindness, but when she had ‘a big problem’ she would send an able-bodied friend to do the asking (many participants found asking for help difficult: see below). So, a ‘benefactor’ may act with what s/he feels to be the kindest of intentions, but it may be experienced differently. When that benefactor is the system administrator, it indicates inadequately conceptualised policy – and the ‘horrible’ gaze inflicted on ‘that person’ with a disability is an indicator of a policy vacuum. Challenge comes, as this speaker said, from having ‘enough people with disabilities integrating’. Comments on people’s knowledge and ignorance about disabilities were threaded through all the interviews. Mobility: getting around in the learning environment Participants spoke positively about primary schools, identifying perhaps the key factor in enabling holistic support at this level - simplicity:
Their illustrations of this supportive environment are indicative of a sensitive element in their struggle for normality – many people with disabilities must bring their personal needs into the public domain:
Flexibility in the built environment is possible, and promoted access to activities. It is clear in this excerpt and in many that follow, that access to the built environment and to the academic process were often almost synonymous:
However, in participants’ experience, most schools were bound by convention. The first speaker, when asked who had blocked her curriculum access, clearly located the problem at systemic level:
One’s ability to get around intersected, not alone with access to academic options, but also with social interactions:
Participants ‘had to fight’: had to keep the system constantly reminded of what they needed – though often the reminders went unnoticed:
Lacking reliable access to technical or personal assistance, students with disabilities often had to get help from whoever was around – usually a classmate. In their descriptions of relations with helpful, inclusive peers, dependency and gratitude are evident:
The next speaker’s difficulty with asking for help is an indicator of how issues intersected in participants’ experience. Achieving mobility in the absence of appropriate aids impacted on relations with peers and teachers:
So, asking for help required courage, and often triggered problematic responses. Finally, ‘access’ was a constituent factor in a very wide range of situations, from major physical dilemmas such as managing stairs, to non-physical processes involved in desk work. The same pattern emerged often, of exclusion arising from lack of supports, and inclusion being only possible through friendly help. And in the following extract, the helpful peer is an example of respectful discretion:
She felt she could not turn to any others in her class:
The next two comments made in relation to third level equally apply to large second-level schools. As buildings and operations become more complex, so do issues relating to mobility:
As will be seen, empowering teachers often facilitated access by simple strategies also, such as photocopying notes. In short, getting into the school in the sense of enrolling was simple, but getting around was problematic. As will be seen in the next section, getting on, doing as well as one could, was even more so. 2.3: Setting the
context for academic progress Class Placement: Flexibility
He took courses at his comprehension level, while he did homework and took examinations at his performance level (given the available assistive provision. With more appropriate assistance, his performance might have matched his comprehension more closely). The school had opened up opportunities for him as much as it could within the constraints of the time; and he was fully satisfied with his social and academic experience and examination performance there
So, flexibility was normal in this streamed, high-achieving school. However, many participants had very different experiences. In many schools that practised streaming, placement appropriate to abilities could be a fading, albeit accepted, dream for the student with a disability who, though still keen to learn, had to join others who had already accepted defeat and follow programmes below his/her ability level:
Discussion of access to studying Irish exemplifies the importance of the ‘discourse of normality’. Students with certain disabilities are exempted from studying Irish, and some types of special primary schools are exempted from teaching it. Two participants mentioned not being allowed to learn Irish. Perhaps the school or teachers exempted them, not alone on the basis of point-of-entry assessment, but also out of kindness, to remove a possible failure from an already stressed life; but the exempted ones did not see this, or welcome the escape. To them this was deprivation (one said ‘it was taken away from me’) because everyone else had to study Irish – it was normal to do it. And exemption had consequences: it depressed the next speaker’s placement options:
He studied Irish with his family’s help and took the examination anyway, because ‘everybody else was doing it’. His exemption may have been warranted at point of entry, but his subsequent performance indicates that a revision was called for. Class Placement: Fragmentation
Inter-school or other distance learning linkages to enable absentees to keep up were not available to any speaker whose health requirements entailed missing school. Expectations
Perhaps he meant to say ‘liability’ but, slip of the tongue or not, this statement warrants attention in both formats. He felt that to the P.E. teacher (and others - staff, Principal, management?) he did not have a disability or pose a liability, but was one or other. The next speakers confronted global categorisation successfully: [The teacher] told me I wasn’t suitable for the higher class. But I got into it and I got a B1. She just assumed that because I had the disability I should be in the lower class. The next extract shows how denial of disability can be the obverse of total focus on it, and both are exclusionary in that they do not address the student with a disability as a whole person:
This experience of globalisation was not limited to subject areas in which physical activity was central. Participants felt that some teachers conflated physical, sensory and learning disabilities, and expected less of anyone with a disability. Whether they did this out of hostility or pity, it was read as dismissal, as writing off the person concerned:
Hostility was perceived even where it may not have been intended, in teachers who overlooked students with disabilities, as if they were ‘going nowhere’. But one speaker experienced overt antagonism: he said he was almost assaulted by a teacher. The teacher had a poor reputation and he himself not ‘an angel’; but the event came across to him as disability-related. He perceived being passed over as expressing strong teacher hostility, contempt for his personal status:
When it came to results, in homework (see above), tests or examinations, school and teacher attitudes also entered the frame. The speaker just quoted also found that her performance was not challenged where that of able-bodied students would be:
It could be said that she sought the right to risk failing – as perhaps did the student who studied Irish independently (see above) – and to be challenged as forcibly as her able-bodied peers. In many of the above instances, it is possible that where the school or teacher acted out of kindness and consideration for a disability; it was experienced as an under-estimate, even dismissal of the person. Participants spoke highly of teachers who empowered them, who saw past their disabilities to the whole person, who encouraged them to take risks:
2.4: Accessing the School Programme Teaching Practice and
Student Performance Participants experienced programme delivery, as mediated to them through teachers. In the absence of systemic provision for inclusion, their experience was heavily dependent on teacher expectations and practice. Good experiences, because they were generated mostly in the informal domain, were not guaranteed – it depended on the capacity of local schools and individual teachers to maintain good practice. In the following sections, participants talk about how they perceived teachers’ practice and their own performance, firstly in relation to interactive processes involving reading, writing, and oral work; and secondly, in relation to more physically involving curriculum areas, requiring laboratory work and physical activities. Experience of extra-curricular activities followed a similar pattern. The totality of participants’ experience in school culminates in their experience of taking examinations. Difficulties here mirror those they encountered earlier. And their achievement in examinations, combined with the way schools prepared them to make career choices, were important factors in setting the stage for their post-school careers. Schools and teachers faced a double challenge: to meet participants’ need to be included, while also meeting their individual needs and potential. This challenge, noted here, will be taken up more fully in the Conclusion. Parents were involved in many cases, drawn into their child’s social and academic struggles, both at home and in school. Teaching Practice
‘Real nice’ teachers accepted a student’s disability as no more or less than itself, and worked with or around it. They found ways to involve the student with a disability: (from written submission)
The term ‘accommodate’ is significant. Positive teacher responses occurred mainly in the informal domain, tacked on to the relatively fixed status quo (they could be read as disturbances of system order). A participant with dyslexia reported how:
The relatively private nature of these teachers’ support notwithstanding, it was treasured because it built up the student’s skills, self worth and ambition. In the above incidents, teachers empowered their students. However, positive responses shaded off into generalised kindness and from that into pity. Pity may feel like kindness, but it can open the door to low standards and expectations, whether the ‘object’, the student, accepted it or was amused by it:
Like any adolescents, these speakers had enjoyed, but did not respect, the chance of an easy life and a joke. This ‘nice’ teachers’ pity was not empowering. The obverse of pity, chronic oversight, was also problematic. The next speaker had severe hearing loss; yet:
He gave up reminding these teachers of his needs. The following interaction illustrates range of responses in classroom practice. The first speaker’s difficulty (deafness) was recognised and the teacher was probably being ‘kind’. The second speaker’s dyslexia was not recognised, and the teacher insisted she was lazy. The third speaker’s teacher globalised her disability label:
In the last extract above, the teacher is reported as switching her frame of reference: overruled in her assumption that this student had a learning disability, she resorted to condemning her for threatening the system order – ‘opening a can of worms’ (the teacher went on to say that if everyone could switch classes there would be chaos). Seemingly, status quo took precedence over freeing the child’s potential. The issue of system order is of particular interest in relation to good teachers, and it will be returned to in the general analysis. Laboratory work and physical activities Students: watchers and actors Even where locational integration was achieved in the sense that the student with a disability got into the Home Economics room, custom and oversight meant that s/he was often audience to others’ involvement:
But some teachers/schools were empowering: they saw past the disability, and encouraged or allowed the student to deal with carelessness or to bypass her/his specific difficulty:
Other responses ranged from exclusion, to neutrality, to informal encouragement, to systemic provision to promote inclusion.
The dominant order can seem natural, even invisible, even to a student with a disability:
During discussion in the second interview, some issues became visible for this speaker:
So, school custom and practice could seem immutable, not just to able-bodied professionals, but also to the very students who were disadvantaged by system rigidity. Extra curricular activities
Perhaps these schools had checked and found it did not have the resources to meet insurance requirements; perhaps insurance difficulties were presumed. Some speakers felt they were left out, simply because nobody thought of them:
Paradoxically, some felt uncomfortably central in a process of exclusion, and their fragile hold on involvement in school activities impacted on the formation of social bonds with their peer group.
Inclusion
and differentiation: the challenge to schools.
The challenge is perhaps less obvious, but is essentially the same, in areas that put less stress on physical capabilities. Parental involvement
What are short tasks for most children could take hours for a child with a disability. This could cause parent-teacher conflict, particularly where the disability was not diagnosed or recognised. The child was caught in the middle:
The struggle could continue through primary and on into second level:
This speaker’s mother invested heavily in trying to change things:
But parent and child could differ in their assessments of the child’s potential, or capacity to cope with the strain involved in keeping up the struggle. Parents were perhaps too ready to think positively about achievements:
Besides, they did not want to put too much pressure on their child:
In extra-curricular activities, as with academic activities, parental involvement, over-protective or encouraging, played a part:
A note on the divergence between participants’ perceptions of parent and teacher attitudes is warranted. Inhibiting parents were seen as over-protective, while inhibiting schools or teachers were usually seen as forgetful or dismissive. Some teachers were overtly hostile and dismissive; many were blinkered and under-estimated participants’ needs and potential. But it is possible that other factors predisposed participants to divergent perceptions. There is the gap between the intimate home and the formal school setting. Also, as is clear from the data, for participants the school was a site of exclusion and isolation. These factors could colour perception, so that teacher reactions which may have been unconscious were read as intentional. But whatever the reason for or validity of participants’ perceptions, they must be attended to if the system is to deliver effectively. Outcomes:
achievement/examinations; career preparation For some students, even accessing available examination supports was a highly uncertain, insecure process:
Perhaps the Principal’s style in drawing down the officially provided examination adaptations suggested that he was acting in the informal, grace and favour domain; perhaps for this student the procedure was coloured by the general staff scepticism - a scepticism that echoes the note of suspicion another student heard in official responses to applications:
Adaptations, when accessed, proved cumbersome, and awesome for some speakers.
Perhaps accurate transmission of one’s inner concepts via another is a dream; but others also found the level and range of supports on offer inadequate, and the stresses involved in their adoption underestimated. The system blocked effective use of adaptations, by not providing an effective delivery context:
More generally shared factors, such as stress tolerance, could also intersect with disability-related issues, such as the impact of substantial periods of hospitalisation on a student’s preparedness:
Fortunately the subjects offered in the Applied programme suited her career training aims. However, others with similar histories might want broader options; to keep them open would require effective links between schools and hospital tuition systems. However, school success is measured by more than examinations. ‘Fitting in’ can be as important as achieving academically, and can devour huge amounts of energy, with obvious implications for achievement:
Again, this exemplifies how all facets of school experience and personal issues intersect. That in turn points to the need to view school adaptation as a complex systemic process, starting with awareness and vision. Career preparation
The career guidance teacher seems to have been badly informed, and this school leaver paid dearly. He blames poor information dissemination throughout the system. One participant (who contributed to this survey by e-mail) said that school had ‘in no way’ prepared him for the world of work. The guidance teacher ‘just said do a desk job, which I am not doing now’. Instead, he opted for mainstream third level education. Another, who also went to third level, was advised to get a job with the Council. But some guidance counsellors ranked among the excellent teachers. One such certainly empowered the next speaker, whose spirit had been crushed by school and teacher responses to her undiagnosed dyslexia:
Section 3: Life and Work Outside School 3.1: Post-school choices To those who had tried to enter it, experience in the wider world of work revealed that the difficulties they had encountered in their school lives were rooted in wider societal perceptions and practice – ‘teachers and employers, peas in a pod’. Mainstream: third level
However, a student who went from special primary to mainstream second level school, tried to continue this path into third level, but:
There is far more investment in assistive technology at third level, but for this speaker at least, the built environment and the pace defeated the process. And it should be noted that while she was so generously offered pieces of expensive electronic equipment, some of the aids whose absence defeated her were ‘simple things like hand rails’. Specialised
provision: third level and further education
However, disquiet with separateness is eloquently expressed in the next extract, and the speaker’s comment pinpoints the essentially ethical concern that generated her disquiet:
One speaker in this group had gone from a special primary school to mainstream second level, and on to mainstream third level but had found the pace too fast there (see above). Her choice of specialised third level provision was strategic, and she intended to try what she called the ‘real world’ again. Her words about why she opted for mainstream second level school have application, even to her own situation as she spoke:
The World of Work
How pity warrants exclusion, and how images of empowering models are censored lest they challenge this, is clear in the next speaker’s angry summary:
3.2: Socialising, in and out
of school This Chapter opens with a return to participants’ school experience, because their initiation into socialising with their peers took place substantially in that context. Everything said about school experience can be read in terms of how the speakers processed it; but they also spoke specifically about how the experience affected their sense of self. In interviews, the closer the speaker was to the ‘other’, the narrower the gap between talk about the other and talk about self. Talk about peers is the most intertwined with self-talk. In interactions with their peers, participants often found that their disability took centre stage and skewed the relationship. In a situation where they just wanted to be normal and get on with social and academic life, participants found they had to set the able bodied at ease vis-ŕ-vis their disability; and when they had to ask for help, they found they had to draw attention to their disability and risk pitying or other problematic reactions (see above). The discussion ranged from developing coping strategies to deal with their peers’ reaction to them, to their dependency on peers to get around school, and their feelings on this dependency, and finally on their coping strategies to ensure a social life for themselves. Introducing one’s self
However, like the teachers, able-bodied peers did not ‘know’:
The next speaker’s life history enabled her to see the issue from both sides, and identify the root cause – people with disabilities have been hidden away:
Belonging and isolation
Whether because of the disability or because of its impact on performance, a person’s social connections could be fragile:
Fitting in socially generated specific dilemmas for a student who transferred from special schools to mainstream:
For this last speaker, social life were transformed by diagnosis of the learning difficulty: Developing and maintaining a social life was not easy: parental protectiveness in relation to trips, and their child’s desire to join the gang in their socialising, to live a normal teenage life:
Participants often found themselves engaged in struggle around issues relating to their disabilities - with the school system, with teachers, with their parents and peers. For many, this etched itself deeply into their sense of self in their sensitive adolescent years.
Young people with disabilities need to be resilient to negotiate social life with their peers. This young woman’s friends learned, but not before they had unthinkingly left her in deepest personal isolation:
This young man tentatively identified the rejections he encountered as evidence of systematic prejudice:
Coping Several participants spoke of having gone through a period of psychological/ emotional difficulty, including alcohol abuse and depression. The above speaker explained why he left school before his Junior Certificate:
Frustration could also result in unsocial behaviour:
Stress was a product of clashes between academic and social ambitions, and personal difficulties:
One speaker argued that added stress is inevitable for the person with a disability:
And it was linked to choices as to where he invested his energy In school I always tried to improve my social life, bring myself up. Success for these young people lay in overcoming difficulties, achieving self-realisation. The individual had to reach inside for solutions:
‘Narrowing down’, in the form of diagnosis and information on her condition, freed the student with dyslexia. So she wanted the information spread around.
Section 4: Lessons to be learned 4.1:
The ‘real world/out there’: perceptions and practice In the ‘real world/’, as in schools, disability-dominated perceptions generate practice:
Indicators are that other participants saw their isolation as indicative of a larger social process, of systematic discrimination:
A visionary scenario, spelt out in an interaction during one interview, shows the way forward:
Later, when talking about raising disability awareness through school programmes, S2 envisages inclusive normality:
‘Understanding’ includes accepting people whose disabilities are not understood (at least yet). Everyone has some disability, labelling is not an issue. And when such inclusion comes about, people with disabilities will have access to the key to a really normal life – economic independence. 4.2: Developing disability
awareness Knowledge and the lack of it were central to all the talk about awareness. And, as one participant said, ‘self esteem is alright but if you don’t know the laws, your rights, it’s not going to get you a job’. The need to ensure that knowledge was matched by a move to guarantee equity by developing good structures was recognised. Why a Disabilities Awareness
Programme? Participants identified teachers’ knowledge and training as crucial to their empowering teaching. ‘Real nice’ teachers (see above) practised disability awareness: they targeted specific learning needs while relating to the student as a whole person, as more than her/his disability. However, many teachers in the range from the simply kind (enquiring if the student was ‘alright’, offering lifts, etc. see above) to the hostile, lacked professional skills. Speakers identified limits and suggested changes. Custom and practice can support prejudice. The presence of a student with a disability makes visible how it is embedded in teaching, as in the most unconscious common social habits. As recognised in relation to sexism, racism, etc., clichés are not trivia; they are part of the verbal coinage of power. Again, the presence of a person with a disability makes visible the insult in a throwaway remark, such as ‘are you deaf?’ The issue of politically correct language is thorny, but other perhaps more tractable issues arise where such casual slippage in language use occurs. Good disabilities awareness policy and pedagogy would ensure that the issues of principle, suggested by cliché use, would be explored with the class, without embarrassing reference to a specific student. Thereby all students, regardless of their (dis)abilities, would be challenged. Disability
awareness: good teaching practice.
Their diagnostic skills should be improved:
Practical innovations would enable students to produce work:
Anti-bullying programmes should include strategies to ensure that students with disabilities are not hurt through peer ignorance:
Specialist counselling support should be provided:
Disabilities as a curriculum topic Some understood disability awareness modules as inevitably attracting unwelcome disability-focussed attention to themselves. But in one group, a participant had attended courses or seminars on the issue:
Two others doubted the value of discussing these issues:
But a third disagreed, referring to the issue of including disabilities in classroom texts:
This led to reflection on the need to disseminate information on specific disabilities:
These ideas were echoed in other groups. Here, the first speaker, who had at first objected to any discussion in classrooms, later realised how it could be done:
One group discussed how they might be better prepared to face an exclusionary society on leaving school:
So, rights must be addressed, and it can be done with sensitivity to personal and interpersonal dynamics in the classroom. Images
and texts in curricula and in the school environment
There is more to achieving such inclusion than producing appropriate texts. A participant envisaged how appropriate curricular inclusion could transform, first teaching, and then society:
However, as identified by the group that discussed the need to know one’s rights, social and political realities do not readily defer to visions, of self or society: 4.3: Consultation Discussion of this issue surfaced a key theme in this data: the need to ensure that people with disabilities are guaranteed structured, formal representation and inclusion at all levels of education provision, starting from the very top. This will be central theme in conclusionary analysis and recommendations, in the final section. Student Representation –
why not?
The second group remarked on this issue at intervals through the interview. Focus was on structural inclusion. At school one speaker envisaged: A mentor, their job to see if you were okay ... part of their job as well as teaching. Later, the interviewer asked if what they thought of being represented on student councils. The first response was to dismiss that idea:
Another participant followed, to talk of representation, not in schools but in government, and of how the trickle down effect would transform everything:
This group opted for top-down rather than bottom up representation – for structural inclusion. The third group did not discuss representation in such political terms; the main comment from that discussion was:
This neatly catches the general desire to not have to continually present and explain their needs relating to their disability. This desire to have provision for their needs integrated into the mundane text of physical and processual provision was a highly significant theme in the interview data, as will be seen in the next section. Suffice it to say here that participants felt that such ordinary inclusion would have enabled them to get on with the stuff of school life – getting on, socially and academically. Section 5: Conclusions and Recommendations 5.1: What the data said Introduction Schooling experience Peer relationships Social Inclusion Mobility Placement/Streaming Absenteeism due to illness and hospitalisation were a problem for some participants, resulting in their relocation in class streams below their ability level. Structural Resources Subject Specific Resources Extra curricular activities posed the same problems for some. Some schools and teachers made an effort to include participants in all their activities and others seemed to forget them. The students at these times reported feelings of exclusion and difference. This resumé of access issues highlights how access and interactions intersected in participants’ experience – as in any student’s experience of school provision. Inclusion in social interactions Participants gave clear indicators that some teachers’ performance was unprofessional by any standards. But the majority reflected relatively unthinkingly the mores of society with regard to people with disabilities. Many teachers had little insight into participants’ disabilities, despite their parents’ efforts to inform the school of their child’s disability and their needs. Participants met with teachers that excluded them in classroom question times, accepted lower standards for their work and gave poor feedback on it, and placed them inappropriately within class. Such teacher responses to students with disabilities point to the lack of information and awareness. As one participant said, ‘they don’t know what they are dealing with, so they don’t know how to go about it so they pretend it’s not happening’. But in this, teachers are reflecting broader societal attitudes: ‘People don’t understand, and you can’t really expect them to either because there is nothing out there to tell them about this’. One participant referred to some disabilities as ‘shrouded’ – precisely catching the experience of people with less evident physical, sensory, or specific learning difficulties. Teachers often bypassed these students, either out of sympathy or because they had categorised them as ‘stupid’ or ‘lazy’. So, teacher perceptions and expectations of students and of disabilities intersect with student performance. Empowering teachers, on the other hand, targeted specific learning needs and related to the student as a whole person. They facilitated students with extra tuition, notes, encouragement and guidance. For many, the interventions of these teachers had an empowering impact. However, this kind of response, which should be more the status quo rather than the ad hoc, occurred substantially in the informal domain. Reflection on Issues Participants with certain disabilities had to rely on their peers to gain access to school facilities, because there was not a system in place to ensure personal assistance or technical aids. Asking for help is always difficult; having to do so on an everyday basis is more so. This altered the relationship of the students to her/his peers. The experience of participants with more hidden disabilities highlights the fact that the issue is not the asking for help in itself, it is what one feels when so doing, what it does to the applicants self image. As one with dyslexia said, she could always ask supportive teachers and friends but these were few. From the majority she got the hidden message ‘I am stupid’, and she would not reinforce this message to herself by asking for their help. Diagnosis lessened the impact of their negative perceptions on her self-esteem. Social life in school Out-of-school socialising in their adolescent years was a closely allied problem for participants. As one participant stated, when his peers began to be selective in choosing their friends, he found he was always going to them and they did not come to him. Friends did not understand, or were not aware of the problems he encountered in common social situations, such as dark pubs and lively nightclubs. Specialised third level provision Consultation In sum, both as regards access and inclusion, participants’ experience was one of struggle and eventual acceptance: ‘you get used to it after a while’. Window of Opportunity:
Disability Awareness Participants identified a need for their peers to have a greater understanding of disability. Though they were uncomfortable with the idea that disability awareness programmes would mean focus was on them individually, they all saw the benefit of such programmes and of the inclusion of people with disabilities in depictions of normal society, in textbooks across the curriculum, and in the school environment. One participant, remarking on how her able bodied friends would react with fear if they visited the special third level institution she attends, said ‘that is horrible’, and attributed it to the lack of awareness they shared with society generally. This theme was carried through the discussion on society, the world of work, friends and teachers. They talk of prejudice encountered in the world of work, the attitudes of people and the media and the lack of understanding in general. The concept of the ‘hidden curriculum’ applies: schools ostensibly challenge society but they are also instruments of that society, designed to maintain the status quo - ‘teachers and employers, peas in a pod’. Participants’
evaluations in context The core argument in this analysis is that the paradigm of ‘normality’, expressed in how the system caters for the majority, is the locus of the problem. To locate the ‘solution’, this paradigm must be transformed, because it defines how the clients are perceived, and generates theories as to how their needs will be addressed. With commitment of resources, changes in practice will follow. Unless both theory and resources are securely in place, critique of local practice usually results in calls for personal conversion on the part of coal-face workers – in this case, teachers and local schools. The nested nature of schools and teacher practice is important, given the emphasis on service deliverers in interview discussions. Talk about teachers (including administrative Principals) dominated. This is not surprising given that teachers, the face-to-face deliverers of education, mediate the system to its consumers, students. But teachers work within the terms laid down by policy makers – the Department of Education and Science, Churches, Vocational Education Committees, and the more amorphous ‘community’ represented by the National Parents’ Council, or perhaps more precisely by parents’ nominees and nominees of other local interests on School Boards. These bodies, the source of power for change, are not visible to second level students, and rarely featured in participant talk, though in every group made some reference to a foundational or power indicator, whether that was ‘laws’, or ‘the architects and the government’, or ‘the Department’. And in tandem with this hidden power structure is the fact that teachers are members of a society which is itself exclusionary. There appears to be a lack of dialogue between and within these levels. It is a function of the Department of Education and Science to devise policy for all education institutions under its aegis. This it has done in relation to education for people with disabilities, in the SERC Report and subsequent documents (see policy review section above). However, it does not seem that any of the middle management authorities named here has issues policy statements demonstrating how this national document will be applied within its area of responsibility. And the evidence from research literature (see literature review above) indicates that the system has developed in an ad hoc manner, inadequately resourced in terms of teacher training, specialised personnel, equipment, and financial resources to meet local needs. This study reveals how participants perceive this system inadequacy, mediated to them via the performance of local schools and teachers who themselves have been failed by the system in their efforts to deliver a better service. This study illustrates the usefulness of initiating such dialogue, registering the hidden voices in the official domain. Access and interaction The narrowness of the conventional discourse of normality is made visible in the reasons why most participants chose specialised post-second-level education and training provision. This seems to give the lie to their stated opinions on integration. But their option actually validates the argument it seems to contradict. Their consciousness of acceptance in separate provision highlights their experience of marginalisation in mainstream. And, how disability related issues are explored in separate provision, highlights their omission in mainstream. The dilemma is that where these students can reflect on such things, they are separated from mainstream, and the majority population is thereby freed from the challenge to face the unknown; the majority’s fear is ‘horrible’. This critique applies to the whole system - all should be able to attend institutions that cater for all, at every level. Specialised supports should be part of the institution’s discourse of normality, offered to match the reality that normal society is a spectrum of disabilities and abilities. This highlights an issue relating to introducing a new, inclusive paradigm of normality. Inclusion of people with disabilities does not end the need for all special programmes. On the one hand, some seemingly specific adaptations will become universal. For instance, people in wheelchairs will still need ramps; what will change for instance in the exterior built environment is that ramps will become the norm because a wider spectrum of humanity can use them, than can use steps. On the other, some specific needs will remain specific, but meeting them will become a matter of course: this has happened already in relation to wearing glasses – who can remember when this was a badge of shame. The same must happen in relation to responding, as a matter of course, to other newly recognised needs – they must be brought into the realm of normality. Students with disabilities are a ‘deviant case’ in relation to the dominant discourse of the school system. The dominant order appears to be the immutable natural order, acquires the invisibility and silence of normality. But the arrival of minorities, such as people with disabilities, make it visible and audible, as the minorities talk and talk, trying to get their needs met, to achieve normality for themselves. But the system’s apparent immutability muffles their voices, generates the assumption that the student has or is the problem. Custom and practice appear acceptable, immutable and invisible - sometimes even to people with disabilities. But eventually the presence of people, who cannot reach the desired goals because the environment prevents them, reveals system choices shaping that environment. Things such as high benches in science laboratories may seem to be part of the natural order, but they are often barriers erected by system choices, and once made visible they often can be changed. Things need not be as they always have been seen. Placing participants’ experiences and evaluations in this context is productive on three counts. It reveals that their local, individual struggle is rooted in a substantive systemic basis; this indicates that the experience will go on being replicated in the lives of others, unless the systemic is addressed. Therefore system context is the framework for grounded reflection on effective system change. 5.2 System response: framework and recommendations Possibilities for system response The argument proposed here, however, is that the system stand back and look at how it defines its clients; and at how that definition, supported by adequate resources, can transform provision. The basic paradigm - how human normality is conceptualised – must be transformed. It is normal for a percentage of the human race to have disabilities of some kind; it should be normal for student and teaching populations to reflect this; and it should be normal to provide a learning environment where students and teachers with disabilities can go about the business of teaching and learning, normally. Principles of inclusiveness must systematically inform the education system. In all institutions, policy statements must be matched with commitment to providing the means to implement them at all levels, including system administration, building programmes, curriculum development, provision for the running of schools, personnel training (for teachers, Principals, people in paid and voluntary management positions, inspectors and administrative staff). Without systematic, comprehensive commitment to inclusion, empowering teacher practice must remain in the informal domain (and devour far more energy than it need do), and students with disabilities will go on having to ask for help over and over again. Obstacles to involvement posed by conventional practices could be overcome, or could be assumed to be immutable. Today, access to distance learning programmes can be ensured; the system must be committed to putting such programmes in place for all students whose school attendance is fragmented, and schools must also be equipped and have policy in place, to activate such programmes and work in this context. Consultation The topic of consultation was of central significance in this study. Two facets warrant remark: first, the need for consultation in the education system; second, discussion of the concept in interviews generated a pointer, identifying at what level within the system consultation should take place. Both pointers arise from the interview data and need no further elaboration. The issue of how representation and consultation should occur within the system was a recurrent topic in the interviews. Participants clearly stated that these processes should be located at foundational or source level – at the level of professional power and policy within the system, involving structural inclusion via teacher mentors, to law. This discussion among participants endorses the conclusionary analysis offered here – that change must originate in the very source of the system, and be comprehensively implemented at all levels of policy and practice, if it is to be effective. This survey has two specific insights to add; each generates a major recommendation. Taken together, these insights and recommendations generate in turn, insights into how specific proposals should be framed; these will be indicated by examples. 5.3: Insights arising from this
study The participants' discussions predominately centred on the following:
And, arising from the inadequacies in systemic preparedness to include them -
5.4: Recommendations arising from these insights The following recommendations exemplify the concept of the inclusive school. They are presented in two stages: recommendations in principle, flowing from the insights above; followed by sample specific provision-related recommendations reflecting the paradigm shift.
Finally, though it was not strictly within the parameters of this study, it was obvious that many participants came to second or even third level institutions, doubly disadvantaged. Lacking assistive technology, they were unneccessarily impeded by their disability and, as a result of having struggled through earlier school levels without such technology, their attainment had fallen behind their ability levels. So, they had two challenges to face when they did get the assistive technology: to learn to use it, and to make up the learning losses they had accumulated to date. Resources must be committed to supply appropriate assistive technology at the earliest possible date, so that students are enabled to achieve to their highest potential, from the very beginning of their formal education careers. 5.5: Research issues arising
Further research is required
This speaker, once she was diagnosed, did start to confront social attitudes. But her phrase ‘out there’ in this extract highlights the sense of separateness, the gap many participants felt to exist between them and the non-understanding world. Schools were microcosms of this wider world. Participants struggled and though ‘you get used to it after a while’, their stories and their involvement in this project indicate that they continue to seek normality, to be included. The resilience displayed in discussions of how things could be changed deserves a positive commitment to ensuring that they are changed, in formal, top-level policy and commitment to provide systemic financial and personnel resources, and in local practice. Appendix: A brief analysis of relevant elements in the Government of Ireland Education Act (1998) The 1998 Education Act provides a statutory and basis for legislation, policy and practice in relation to all education provision. Kenny (1999, publication pending) provides a brief review of what the Act has to say about education for people with disabilities. Section 7 states the functions of the Minister under this Act ("functions" include powers and duties (p. 6)). The first function is:
Right through the Act, every reference to education consumers (people availing of state education services - children/pupils/students etc.) is followed, as above, by the phrase ‘including [those] who have a disability or who have other special educational needs’. (‘Special educational needs’ refers to ‘needs of students who have a disability, and … exceptionally able students (p. 8)). Section 2 provides the following definitions of disabilities: 1) "disability" means:
These definitions are clinical in terminology. However, such definitions may ensure that a given disability is recognised and responded to as neither more nor less than itself. Section 2 (3) defines ‘support services’. The following elements are particularly relevant to students with disabilities:
There seems to be a limitation in the supports listed here. Subsection (d) seems to relate ‘technical aids’ only to physical access. Learning-related aids listed relate only to psychological (b), hearing (e) and speech (f) needs; there is no reference to other forms of learning-related assistive technology, such as Braille or electronic aids. However, given that (as noted above) all references to education consumers are stated to include those with disabilities, it would seem that a full range of supports other than any or all of the above must be offered, to ensure that the Minister can actually offer a disabled student an education ‘appropriate to meeting the needs and abilities of that person’ (p. 10, Section 7). Section 7 (4) states that ‘in carrying out his or her functions, the Minister shall have regard to’ the resources available; provision for education and training by other agencies funded by the Oireachtas; and traditions and the right of schools to manage their affairs, in accordance with this Act. Latitude is given, but qualified. Also, the Minister shall ‘make all reasonable efforts to consult with’ all the education stake holders, including ‘persons or groups of persons who have a special interest in, or experience of, the education of students with special educational needs’ (pp. 11-12). Part VI Section 37, defines ‘education support centres’ as places ‘in which services are provided for schools, teachers, parents, boards …’ to support them in providing education (p. 33). Given the reference for all these partners, development of support provision for students with disabilities would presumably come under this remit, as envisaged in the SERC Report (1993). 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