The authors, jointly representing the National Institute for the Study of Learning difficulties at Trinity College Dublin, and the UCD Centre for Disability Studies, carried out a small-scale survey of the experience of parents of children with Down Syndrome and other learning disabilities in mainstream schools in Ireland—why that choice was made, how it was achieved and their hopes for their children’s future. Interviews were conducted with the parents of ten young people with disabilities, nine girls and one boy, aged between 13 and 22 years. Seven lived in a city area, and three in a regional town. Most had attended, were attending or were about to attend, a mainstream second-level school, while two were in special schools (after attending local primary schools). Parents were interviewed during 2002, recounting educational experiences over the preceding decade.
Although carried out on a small scale, and summarised in a short fifty-page report, the study highlights the blocks to educational inclusion, both attitudinal and resource-linked, which still exist in the Irish education system. In every case, there was evidence of the inherent struggle parents face in order to access mainstream provision for their child, and to support that decision throughout the school years. All the parent participants viewed the core issue to be social inclusion; they felt their children made gains in communication, literacy and social competence within a local mainstream school setting. They expressed a strong belief that their children were making an impact on changing societal attitudes for the better. However, in many cases they ‘had to educate the school’—and especially school principals—to overcome reticence to accept a child with disabilities. All the parents experienced ‘chronic vulnerability’ within the insecurity that persists in educational provision for their children with disabilities.
The research findings of the study strongly endorse the recommendation that educational provision should ‘be informed by a concept of the pupil/student body as diverse’—‘to respond on a human-rights basis to every person as they really are, rather than as individual replicas of a standard model.’ It states that a broad awareness shift is needed, aided by public debate and the media, so that ‘the legal right of presence for the person with a disability is underpinned with a welcoming inclusive culture.’
Meanwhile, the unfortunate reality for families of children with disabilities, at present, is summed up in the last two sentences of the report:
‘In a society informed by assumptions of exclusion, the disabled person and her/his immediate family and friends carry the burden of ensuring that person’s civil rights on their own. They have to do the job for all of us.