No room at the Inn??
The landscape of higher education for people with disabilities has changed dramatically in certain respects in our recent history. Human Rights Conventions and national education policies which call for inclusion and diversity of the University campus have facilitated this change. For people with intellectual disability, the change has been slower yet there is a growth in post-secondary higher-level options for these students. The question I explore in this paper is whether the very presence of programmes for students with intellectual disability makes the campus a diverse and inclusive space or is more needed?
A lightbulb moment
In 2003 I travelled to London to visit a David Hevey photographic exhibition called ‘Giants’. I had read some of Hevey’s work around the representation of people with disabilities in advertising, particularly charity advertising, and of note, his pioneering work the Creatures Time Forgot (1992). In this, Hevey draws the comparison between how charity advertising works on fear and encourages the audience to buy distance from the brand (notably the disease, disability, poverty, abuse etc.) whereas commercial advertising works to get the audience to buy associations with the brand. The power of the visual representation and the spatial implications of such representations as being distant from or close to intrigued me. This raised further questions of inclusion and exclusion, not only as opposing mechanisms but with layers of complexity in terms of the nature of inclusion. Inclusion has the potential to be just as discriminatory, stigmatising and disabling as the complete exclusion of a group from the space – visual, discursive or otherwise.
I was working on my MPhil thesis at the time of the visit. The thesis was exploring the role of commercial advertising in the social process of disability. That is, to what extent the absence of people with disabilities from commercial advertising contributes to disability the social process. As you can imagine, having the opportunity to see Hevey’s latest work was of great interest and didn’t disappoint.
Underpinning this exhibition, Hevey identified three stages of existence for people with disabilities – ‘unseen’, ‘being seen’, ‘being’. ‘Unseen’ denotes times of institutionalisation, segregation and exclusion, for example, from education, marriage and having children; ‘being seen’ refers to the beginnings of the disability rights movement and times of protest; and ‘being’ is an arrival at access to rights and equality (Hevey, 2003). In other words (and borrowing a slogan from the UK Disability Arts Movement), it was time for people with disabilities ‘to boldly go where everyone else has gone before’.
Where are we now in the social process?
I feel these concepts are just as relevant today and co-exist within and across different sectors of society. One phase does not serve to eliminate the previous. Just as the social model did not eliminate the medical model. Advocates of the social model such as myself are all too aware and reminded regularly of how persistent the medical or charity model is in today’s world and more specifically how charity and medicalisation perpetuate the discourse surrounding the inclusion of students with intellectual disability in higher education. In preparing to write this paper, and reflecting on my experience in my role as programme co-ordinator for a two-year accredited programme for students with intellectual disability in Trinity College Dublin, the stages of ‘unseen’, ‘being seen’, ‘being’ as identified in Hevey’s exhibition sprang to mind again and led me to consider them in the context of the current status of people with intellectual disabilities in higher level education.
Implicit within these phases is a value judgement on the lives and importance of the lives of people with disabilities made by society. There is also a value judgement on how and where people with disabilities live their lives. Kitchen (1998) talked about space being socially constructed to keep people with disabilities ‘in their place’ and ‘out of place’. Similarly highlighted in Goffman’s (1990) work on stigma. One might ask, is the university constructed to keep people with intellectual disabilities, in or out of place? Surely, University is one such place where people with intellectual disabilities should ‘boldly go’?
Developments in third level education
Let’s start by acknowledging firstly, that Higher Education policy has served to not only increase student numbers but to widen participation to include groups not traditionally included in HE. For example, mature students, students from lower socio-economic backgrounds, ethnic minorities and people with disabilities. However, there is a noted hierarchy of disability within the higher education setting (Barnes, 2007) and students with intellectual disability are very much on the lower tier of that hierarchy.
Secondly, there has been a growth in post-secondary school options (the United States was at the forefront of this development) with the importance of post-secondary education for students with intellectual disability first mooted in the 1980s (Jones and Moe, 1980) and approximately 260 HE institutions offering a programme of some kind. Currently, in Ireland ten HE institutions independently offer programmes for students with intellectual disability, and recently joined together as a supportive and collaborative forum of providers under the Inclusive National Higher Education Forum (INHEF). Similarly across Europe, specific programmes for students with intellectual disabilities are in place and a European Network of Inclusive Post-secondary options was established in 2019 under Erasmus + funding. I am a member of both the Forum and the European Network.
The student journey
So students with intellectual disability, in some jurisdictions, are moving from being ‘unseen’ in the third level context to ‘being seen’. I think programmes will continue to be developed internationally as there is an appetite from students with intellectual disability and their families to progress to post second level education and a path other than the traditional day service model.
The three types of higher education programmes that currently exist – fully inclusive, separate, hybrid (Hart et al, 2006)) – will likely continue to co-exist across jurisdictions. The fully inclusive model refers to programmes where students with intellectual disability attend mainstream classes on campus with other typical students; the separate model as the name implies is one where students with intellectual disability are in segregated classes and there is minimal opportunity for integration with the wider campus population and the hybrid model is a mix of specific classes for students with intellectual disability with opportunities to study and socialise with other students on campus also. There is much written about the pros and cons of these models, and debate of which is better is not the focus of this paper but I will refer to some differences between models in examining my central concern. This is the specific status of students with intellectual disability in HE drawing on Hevey’s ‘unseen’, ‘seen’ and ‘being’ triad and the use of the construction of space to keep people in place or out of place as discussed by Kitchin and Goffman.
What is the impact of the current approach?
At the very essence of this concern is my belief that one cannot assume that the very presence of a post-secondary education course for students with intellectual disability automatically means that the campus, and the college community, understand, are trained, believe in and promote the principles and values of the social model of disability or that there is a consensus on the right for people with intellectual disability to access higher level education. These programmes do open up the university space or elements of that space to some students with intellectual disability.
Having specific programmes and/or access to mainstream curricula through fully inclusive programmes for students with intellectual disability is not enough – and does not by consequence mean that the university is inclusive and diverse. Much is required of systems to ensure the campus and community is inclusive. At the recent Pacific Rim International Conference on Disability and Diversity, March 2020, Frederic Fovet spoke about the principles of Universal Design for Learning (UDL) and how they should not be the responsibility of segregated pockets of the university but should be applied campus wide with everyone holding responsibility. He observed that applying UDL campus wide is, in fact, enacting the social model of disability in the university.
Comparing the fully inclusive and hybrid models
Let’s compare the ‘fully inclusive’ and ‘hybrid’ models in terms of enacting the social model of disability.
Fully inclusive programmes in which students with intellectual disability take modules from across campus, focus on opening the university space to students with intellectual disability and providing the opportunity to experience college life. Typically, individualised support and peer mentorship with access to a broad curriculum characterise these programmes. The individualised design means that students with a broader range of support needs have access to the university. These programmes provide valuable opportunity in this regard and some provide pathways into employment. However, they do not provide students with intellectual disability the opportunity to attain credits and qualifications comparable to peers without intellectual disability. Thus, students are included but that inclusion is capped. Environmental and systemic issues are addressed to ensure access to and participation in college life, but barriers in obtaining qualifications persist.
Hybrid programmes which offer accreditation such as the programme in Trinity and the Community Integration through Cooperative Education Model in Canada, provide the opportunity for students to obtain a recognised qualification and all that it brings in terms of pathways and choice post completion. However, the accredited nature imposes greater restrictions on who is eligible to participate and reduces the amount of flexibility in learning opportunities as the programme is structured and the full remit of campus modules is not available. Being full-time students, with student cards and the right to supports and services that all students have is a major positive. BUT having the right to access services and supports does not mean that the supports and services are attuned to the social model of disability or the needs of this student population in a manner appropriate to the specific needs.
In a sense, the gains with one model in one area can result in losses in others. The fact that universities have created a space for students with intellectual disability ‘to be seen’ is no doubt positive. It should be recognised that one programme cannot and should not aim to be all things for all people. Its likely multiple programmes or access routes are needed. Just look at the number and range of courses available through the Central Applications Office (CAO) – the wider student population has varied interests and needs for what and how to learn. Why would students with intellectual disability be any different in that regard? As a community of third level/university providers, we have the ability to work beyond the current programmes, which serve as a great start but by no means are the end goal. We have the potential to break down the current blocks to flexibility and student led curriculum and to provide the opportunity of transformation that the university experience proffers to more students with intellectual disability. We as an academic community have the potential and opportunity to support students with intellectual disabilities.
Creating a better understanding of ‘diversity’ and a more inclusive approach
What we need to consider and challenge is our idea of diversity. Opening up the university space is hugely positive, for people with intellectual disability, their families, the university and society in general. However, we should not sit on our laurels and consider the work done. Simply opening up the university without deconstructing the current space and ensuring the space and systems are constructed to enable inclusivity at all levels is not enough. A certain cohort of students are currently accessing third level but the reach and breadth could and should be wider. In my experience, there are people who currently don’t meet the criteria for our programme but could still potentially benefit from the experience of being a university student. I’m sure other programme co-ordinators worldwide are having similar experiences. We need build capacity to ensure the university space is constructed in a way that is truly inclusive and reflective of the diverse student body and student needs, and which facilitates students with intellectual disability in ‘being’ students.
Barnes, C. (2007) Disability, Higher Education and the Inclusive Society, British Journal of Sociology of Education, 28 (1), 135-145
Fovet, F. (2020) Examining hurdles in the strategic implementation of Universal Design for Learning in schools. Pac-Rim International Conference on Disability. Oral Presentation.
Goffman, E. (1990) Stigma: Notes on the Management of Spoiled Identity. Hammonsworth: Penguin
Hart, D., Grigal, M., Sax, S., Martinez D., & Will, M. (2006) ‘Postsecondary Education Options for Students with Intellectual Disabilities.’ Research to Practice 45: 1–5.
Hevey, D. (1992) The Creatures Time Forgot – Photography and Disability Imagery. London, New York: Routledge
Hevey, D. (2003) ‘Giants’ Exhibition. London
Kitchen R. (1998) ‘Out of Place’, ‘Knowing One’s Place’: space, power and the exclusion of disabled people, Disability & Society, 13 (3), 343-5.