Introduction
In 2022, at the time of this writing, universities are primarily back on campus following the lockdowns of the COVID-19 pandemic, and students in the United Kingdom enjoy the plentiful benefits of university life. For some, university studies lead directly to careers and employment upon graduation. This track is not open to people with intellectual disabilities in the UK. There are options for study in further education and in specialist colleges, but not in universities. It appears that universities are one of the last bastions in the UK to resist equity and inclusion of students with intellectual disabilities.
Ableism in Academia
Ableism in universities reflects the cultural norms of society. Within higher education, ableism – in the form of social, physical, and emotional barriers and biases towards students and faculty with a disability – is well documented (Campbell, 2009; Bé, 2019; Brown, 2021; Brown and Lee, 2020; Brown and Ramlackhan, 2021; Dolmage, 2017). The universities continue to perpetuate this societal norm. However, research on and reference to ableism (also termed disableism) in regard to the inclusion of students with intellectual disabilities in higher education is sparse. For example, in key texts such as Think College! Post-Secondary Education Options for Students with Intellectual Disabilities (Grigal and Hart, 2010) and Handbook of Research-Based Practices for Educating Students with Intellectual Disability (Wehmeyer and Shogren, 2017), programs are marginally framed within the concept of ableism. In academia it is perhaps even harder to counteract and challenge ableism in relation to students with intellectual disabilities, as of course historically the prestige of universities is based on the rigor of educating the intellectual elite. Ableism in academia is critiqued primarily in regard to discrimination against students with physical and mental disabilities or learning difficulties (Moriña et al., 2020). Intellectual disability is not yet on the agenda. Derby (2016: 102) writes, “While ableism is similar to other isms, I suggest that it differs in that it operates below our cultural radar and remains socially acceptable”. In parallel, I suggest that within a university context, ableism also operates below the cultural radar of academia and elitist attitudes, and this “stone” is most often left unturned. Within this framework, the following discussion is of particular relevance.
A Civil Rights Issue
Back in 1948, the Declaration of Human Rights Article 26 stated that everyone has a right to education. The question in this case is: What kind of education and where? In 2006 the UN Convention on the Rights of Persons with Disabilities affirmed the right to an equal opportunity to education, and “states” were obliged to provide opportunities for inclusive life-long education. The UK Government became a signatory to this resolution (ratified in 2009), which requires state parties to ensure there is an inclusive education system at all levels (Article 24).
This is not merely an education issue. Hawthorne-Edwards (2022: np) states: “In English society there are few opportunities for interaction between neurotypical people and those with learning differences. As a result, when these two worlds coincide, neither knows how to respond to the other”. Universities could be a safe place where diverse undergraduate students together with students with intellectual disabilities could engage and interact, learn from each other, and develop an understanding of the value of all members of society. At stake is not merely inclusion in universities but in society, where all members are valued, made welcome, and are given the opportunity to contribute.
An International Trend
Inclusion in higher education is a growing movement internationally. In North America, there are programs throughout the 50 States in the USA excluding Wyoming, with 23 universities recently receiving substantial federal funds through Transitions and Post Secondary Education for Students with Intellectual Disabilities (TPSID grants). Canada has a number of programs, particularly in Alberta, where the University of Alberta has one of the world’s oldest, having started in 1987, and where 20 additional programs have been developed. Programs also exist in Australia, Israel, and various European countries, who have come together in a newly founded consortium: the European Network for Inclusive Education. These include universities in Austria, Republic of Ireland, Iceland, Germany, Spain, and Switzerland (See the Appendix). Universities in these nations have been able to bypass the ableist mindset and neoliberal trends to offer inclusive programs. The question is “How have they been able to change the status quo while universities in the UK have not?”
In regard to the USA, programs began in the 1970s and increased in the 1990s as federal funding became available (Papay and Griffin, 2013). There are currently 315 programs for students with intellectual disabilities. This has grown exponentially from 24 in 2004, representing a growth factor of just under 13. However, there are currently 5300 colleges in the USA and only 315 of them have programs for students with intellectual disabilities (Think College, 2022). Thus, a mere 5.9% of USA colleges are inclusive. The number of students who are applying for places in university inclusive programs is far larger than the number of available places. Nevertheless, the awareness of this being a civil rights concern is increasing, as reflected in the growth factor over the past 18 years (O’Brien et al., 2019).
Exceptions in the UK
Starting in the 1980s, the Open University offered distance learning courses for students with intellectual disabilities and their families. Over 30,000 of the course package ‘Patterns for Living’ (1986) were sold; and ‘Exploring Learning Disabilities and Belonging’ (2019) is still available. The university’s erstwhile dean and champion of these initiatives, Jan Walmsley (2020: np), stated: “There was a great deal of skepticism. It worked very well. People were part of a university – there was a feeling of being valued, of recognition”.
The Royal College of Speech and Drama, part of the University of London, currently offers students with intellectual disabilities a two-year diploma (Gardner, 2014). And the University of Winchester hosts Blue Apple Theatre, bringing an inclusive theater company to the university campus community. In addition, there are opportunities to be involved in inclusive research in universities, for example in the “Self-building our lives” collaborative research project (Hall et al., 2019; de Haas et al., 2022) and ongoing research projects, including with faculty and doctoral students at the Centre for Research in Inclusion at the University of Southampton. Also, journals such as the British Journal of Learning Disabilities require additional Easy Read format abstracts. This is an indication that scholarship in the UK is becoming accessible to those with intellectual disabilities. Clearly, some universities in the UK see value in funding these inclusive practices, but not yet in offering programs.
Further Education Non-inclusive Specialist Colleges
Since the UK government published the SEND Code of Practice in 2014, young people with an Education and Health Care Plan (EHCP) in England have been entitled to an education up to the age of 25, depending on their need (Department for Education and Department for Health and Social Care, 2014). (Scotland, Wales, and Northern Ireland also have their own codes of practice.) This Code of Practice led to the formation of specialist colleges. However, these colleges are not inclusive nor affiliated with a university (Carpenter et al., 2023).
In the UK there are more than 60 of these specialist colleges, some set up for students with severe or complex special educational needs. These colleges serve a need but they are not inclusive. Students are not integrated with non-disabled peers. Yet these colleges could be affiliated with a university; for instance, their students could make use of sports and social facilities and engage with undergraduate students. In 2022 the National Association of Special Education Colleges created a new national award for “Equity, Inclusion and Diversity”, which demonstrates their growing awareness of the importance of inclusion (Natspec, 2022). This award was won by Sheiling College, with whom the author set up an inclusive music outreach program during the pandemic.
Oxbridge Mindset
The Oxbridge mindset is exclusive and elitist (Carpenter, 2020). Oxbridge combines the names of the universities of Oxford and Cambridge in the UK and refers to both institutions and their traditional values. A comment that was recently made to the director of the newly formed BLuE Program for students with intellectual disabilities at Salzburg University is a good example of the “Oxbridge mindset”: “Are we not here to educate the elite?” (Plaute, 2017). Edwards-Hawthorne (2022) points out the historical context for the development of this Oxbridge mindset: “When Oxford University emerged around 1096, its students were men from predominantly wealthy backgrounds”. Further, “English education has been strongly influenced by the Platonic hypothesis of Gold, Silver and Bronze souls. The role of universities has been to educate the intelligent elite Gold souls for their future role as paternalistic leaders”. The elitist status quo has deep historical roots.
Missions of UK Universities
Bennett (2021) analyzed the mission statements of 32 research universities in regard to ableism and its connection to neoliberalism. Bennett avers that neoliberalism normalizes ableist standards and therefore university mission statements may espouse ableist ideals. On the surface, UK university mission statements seem to reflect an holistic and humanitarian outlook, but there is a disjunction between their rhetoric and practice. The Russell Group is a prestigious group of 24 top research-intensive universities in the UK; and the mission of one of the Russell Group Universities, like many, is aspirational: “We will change the world for the better through our research, education, innovation and enterprise”. It does not qualify – more accurate would be “We will change the world for the better – except for those with intellectual disabilities”. For where exactly are this group’s inclusive practices? One of the world’s oldest (and the UK’s most prestigious) universities, which I will not name here, aims “to contribute to society through the pursuit of education, learning and research at the highest international levels of excellence”. Yet in the area of inclusion their education and research lags well behind the international standard.
Challenging Notions of Intelligence
When weighing the “Oxbridge mindset” and its role in society within the context of the present discussion, questions inevitably emerge. What and whose lives are worthy of quality education within an inclusive society? Students other than those who will be matriculating and earning a degree also have value and can contribute to the university as well as benefit from it. This is not to say that Oxford or Cambridge should lower their academic standards for those on a matriculating path, not at all; but why do these communities need to be exclusively for the academically elite? Oxford and Cambridge have already made headway, including through partnering with the Sutton Trust in regard to making places available for students from lower socio-economic communities and to students who have not attended a private school (Montacute, 2018). Perhaps the next step for them in leveling the playing field is making programs and places available to students with intellectual disabilities.
It should be noted that the prestigious Trinity College in Dublin has a program for students with intellectual disabilities, so why should there not be such programs at the universities of Oxford or Cambridge? Could Oxford or Cambridge turn around the ingrained elitism and ableism that is associated with such institutions? Second, as Dan Habib (2018) remarks in the film Intelligent Lives, what we consider as intelligence needs to be addressed. Lifshitz (2015, 2020, 2022), in her research in Israel, documents how “higher functioning” students with intellectual disabilities were able to be supported in accessing and become increasingly successful in obtaining credits toward a degree.
Benefits of Inclusion
The benefits of inclusion in university programs for students with intellectual disabilities has been extensively written about (Bjornsdottir, 2017; Carpenter, 2015; Corby et al., 2020; Lindell et al., 2021; Hughson and Uditsky, 2019; O’Brien et al., 2009; Plotner and May, 2019; Rillotta et al., 2020). The ability to obtain employment after college is one such benefit. Parker (2021) reports that students in the USA who have completed a certificate for attending a program within a university are far more likely to be able to find and keep employment. Indeed, they are twice as likely to be employed as those who have not. Further, for those in employment and who had attended a course, their earnings were much higher. In regard to USA government-funded programs, among students who had attended a Transitions and Post-Secondary Education (TPSID) granted program, 52% of graduates are now employed in comparison to 18% who had not attended a program. Further, 72% of these graduates had employment two years later.
Transitions to employment are often built into these programs. Trinity College has created partnerships with businesses which ensure that their students receive entrance-level salaries that are the same as other new employees (Ringwood and Devitt, 2022). At the University of Alberta, former students have the opportunity to join the program for continued employment advocacy and on-the-job assistance; founded in 2000, Alumni Employment Supports now assists 28 graduates (On Campus, 2023). The newly formed CUNY Unlimited program, at some of the colleges within the City University of New York, has created a meaningful credential for its non-matriculating students. It is hoped that in the future this credential will become valued by potential employers throughout New York City, who may already know of the program and its credential through providing internships.
Career Options and Opening up Subject Areas
At Kingsborough Community College, part of the City University of New York, the author has supported students with intellectual disabilities from the current Melissa Riggio Higher Education Program, which includes auditing undergraduate classes as well as taking their own classes in life skills and in self-advocacy (taught by the program’s alumnae). Experience has revealed that not all undergraduate courses and subjects are realistically appropriate for these students to audit. For example, a student in the program was mistakenly placed within a writing-intensive anthropology class; both the faculty member and the student were at a loss to make the experience meaningful and a success. The student who was assigned the class was not able to write at an undergraduate level and the course was designed and assessed through writing assignments. There were no appropriate alternative universal design for learning (UDL) options to fulfil such a specifically writing-intensive course.
Another student in the program, whose parents were psychologists, expressed a desire to become a psychologist. To lead the student into believing he too could be qualified as a psychologist would have been misleading and unrealistic. However, the director of the program counseled the student, asking what it was about being a psychologist that appealed to him. Was it helping people? Talking with people? As a result of the discussion the program director suggested other careers that were within the student’s reach that would potentially be attractive and meaningful to him.
Voices of Lived Experience
Inclusion in universities brings effective benefits for the students with intellectual disabilities, matriculating students, and the faculty. That the students with intellectual disabilities find satisfaction in their university programs seems obvious, but listening to these students’ voices reveals many unexpected nuances. In the book People with Intellectual Disabilities Experiencing University Life, the section on “lived experience” presents the opinions of four students from Trinity College, Dublin, and the University of Massachusetts in Boston. One student writes: “I am a living experience of neuroplasticity, my brain is re-establishing pathways and I am beginning to comprehend more” (Walker and Macdonald, 2019: 183). And Kerri-Ann Messenger writes: “You do not know what to expect in life as you are growing up, but if you listen to your heart, and dream of the future and what you hope to achieve, maybe you will get somewhere you believed you could never be. […] This is like what happened to me” (Messenger, Lindsay, and Rillota, 2019: 173). These thoughtful reflections demonstrate the profound benefits of their programs.
The author teaches Disability Studies, Art and Music, and Movement in Education to student teachers at Kingsborough Community College and welcomes and includes two students with intellectual disabilities (supported by a mentor) on a regular basis into each of these courses. Reporting as a participant observer, the author can attest: the students with intellectual disabilities enrich the learning environment, changing the atmosphere and culture of the classroom. The result of a comparison of multiple sections of the same course, in which some sections have students with intellectual disabilities and others do not, results in a clear contrast: the atmosphere, the sense of community, the sense of looking out for each other, and of belonging, is much stronger in the inclusive sections. The students with intellectual disabilities in general are engaged, enthusiastic, and more often than not very appreciative of the opportunity to learn. In a personal communication to the author (2019), one of these auditors wrote:
What I enjoyed about being at Kingsborough Community College in Brooklyn was the fact of being able to attend college classes as well as interact with other college bound students. I remember how the students so enjoyed working with us … [and a] class I took part in, when we had to put together different art projects to do with the younger kids.
Another Melissa Riggio student wrote in a personal communication (12 March 2020) the following about some of the many benefits of being part of a university:
- 1)
A chance to experience a real college campus!
- 2)
See what an actual college level class is like – academically.
- 3)
Get to meet and mingle with college students in activities and events.
- 4)
It’s both: Growths [sic] for [people with] disabilities to strive up to college level; and for normal students to learn how to cope with the normal world which includes [people with] disabilities!
Each of these students evinced enthusiasm for their experience. Some reflected on how they helped other people (“the younger kids”) and the community (aiding “normal students to learn how to cope with the normal world”). All clearly appreciated the opportunity to be included in university life.
Matriculating undergraduates also perceive benefits from inclusion in their classes. As the author (2015) has written in another context, “the students’ enthusiasm, commitment and willingness to engage and learn has been such that they have become role models to the undergraduate student teachers in the Education program”. For example, honors student Toni Abreu (2017) remembered with pleasure: “The students [with intellectual disabilities] were interested in me, not just in what grade I got for the assignment”. She and others realized the Melissa Riggio students contributed in many positive ways to the class (Carpenter, 2015). This phenomenon represents an under-researched topic in inclusion studies.
Who is Benefiting?
It is important to be aware that the positioning of marginalized groups such as students with intellectual disabilities should not be taken advantage of as a vehicle for the learning of others. However, it is clear that the inclusion of students with intellectual disabilities in higher education benefits all: it is in essence a win-win situation. For the students with intellectual disabilities, as with anyone, the opportunity to contribute, and to be seen as actively contributing, is empowering (Moriña et al., 2020; West and Garber, 2004). Those with intellectual disabilities will have, among other benefits, opportunities to grow and develop, and have a sense of belonging which they may not have otherwise had (Nind and Strnadova, 2020). Undergraduate students, some of whom will become future leaders of society, will gain understanding, awareness, and experience of studying alongside different types of learners. In this context, both cohorts are educated holistically.
It should be noted that in the USA, students with disabilities, including an intellectual disability, may or may not choose to self-disclose. It is their choice. Therefore their undergraduate peers may or may not be aware of their disability, nor that they are not working toward an undergraduate degree but rather an alternative certificate. In one instance at Kingsborough Community College, some weeks into the course, undergraduate students were taken aback when a student self-disclosed his disability and that he was auditing the class, i.e. not taking it for credit. On another note, the undergraduates were also surprised and exclaimed, “You come to class just for fun, not credit?” This pointed out to the undergraduate students that the Melissa Riggio students were self-motivated, eager to learn and be part of the college experience for its own sake, and not just motivated by obtaining credits toward a degree as they themselves possibly were. This can potentially change the ableist mindset of undergraduates who may otherwise see a student with an intellectual disability as a victim and someone to be pitied, rather than an engaged and active student and often role model. As Judy Heumann stated in the context of changes to the laws in gender, race, and disability, the outcome will “allow people to meet each other on a daily basis and to get to recognize that we are all part of the whole” (ACLU reacts, 2021).
The IHE (UK) Advocacy Group
Because of the lack of choice for tertiary education for potential students of all ages with intellectual disabilities in the UK, the Inclusion in Higher Education (UK) advocacy group was formed in 2021, advocating with and for students with intellectual disabilities to have inclusion in higher education. The IHE (UK) has members from nine countries actively involved, including Norway, Australia, the Republic of Ireland, the USA, Austria, Iceland, and the UK, and sessions have also included members from Australia, Greece, and India. The growing network of advocates for inclusion of students with intellectual disabilities in higher education in the UK is made up of faculty, students with intellectual disabilities, parents, disability advocates, and administrators. The first meeting was held on Martin Luther King Day, an appropriate day to advocate for a civil rights issue. The group has received support from: DiversityandAbility; the University of Kent’s Tizard Center (a reflection of its matriculating degrees designed for neurodiverse students); the Centre for Studies on Inclusive Education (CSIE); and the University of Southampton’s Centre for Research in Inclusion.
Mission Statement and Goals of the IHE (UK)
The IHE (UK) advocates and raises awareness for the rights of people with learning differences/intellectual disabilities to effective and enriching post-secondary education including their participation and contribution in universities, for the mutual benefit of all. The goals are:
- 1)
To advocate for and with students with learning disabilities to have a choice to have access to a university and the opportunity to contribute to that learning environment and to society.
- 2)
To raise awareness of the inequality in higher education in the UK.
- 3)
To advocate for and with students with learning disabilities to have a high-quality meaningful education of their choice, whether in higher or further education or within specialist colleges.
- 4)
To raise awareness that all students can potentially be empowered by their contribution within all tertiary education institutions.
- 5)
To draw attention to the fact that the community as a whole, within a university or any tertiary institution, does not have the opportunity to benefit from the contributions of students with intellectual disabilities.
- 6)
To form links with universities in the UK to encourage them to start certificate programs similar to those in the USA, whereby students audit and are included in degree courses, participate in internships, and attend courses on self-advocacy, money management, et cetera.
- 8)
To advocate for people with intellectual disabilities to be employed as lecturers/speakers within a university.
- 9)
To develop partnerships between universities, further education colleges, and specialist colleges.
- 10)
To educate the wider community on the benefits of the above.
Inclusive Models
There are various models for students with intellectual disabilities to have access and contribute to a university. Most have been successfully implemented in universities internationally. These include:
Students with multiple/complex disabilities accessing the facilities and university campus – i.e. making use of the university café, sports facilities, swimming pool, library, et cetera.
Students with intellectual disabilities collaborating on and contributing to online projects and courses. An example is the online music outreach project, a collaboration of the specialist further education college, Sheiling College, UK, and the City University of New York, USA (Carpenter et al., 2023).
Students with multiple/complex disabilities included in field work. For example, students from Sheiling College were involved in an archaeological dig with undergraduate and Masters students at the University of Southampton.
Students attending undergraduate courses – auditing them, not getting credit toward a degree but toward a meaningful certificate; e.g. the Melissa Riggio/CUNY Unlimited students at the City University of New York. They also have: non-inclusive courses in life skills, money management, et cetera; internship opportunities; and courses focusing on self-advocacy co-taught by alumni of the program.
Students with intellectual disabilities employed on the university campus, within a café, or within administrative offices, as at Dublin City University.
Students have their own certificate program separate from the matriculating students but with faculty from the university teaching these courses, as at Trinity College, Dublin, at the Centre for People with Intellectual Disabilities (TCPID, 2022).
Students with intellectual disabilities undertaking a matriculated degree, supported by accessibility services. To specify one precedent: in December, 2021, a student with Down Syndrome in the Up the Hill program at Flinders University, Adelaide, Australia obtained a degree (Dayman, 2021).
Stumbling Blocks, Steps, and Strategies
Finding funding in a climate of austerity is a complex and daunting practical problem. However, within higher education institutions there is another major attitudinal stumbling block to fully embracing students with intellectual disabilities. An understandable fear, but rooted in ableist attitudes, is that the university will be seen to be “dumbing down” the high standards and intellectual rigor of its reputable institution. It is important to remember that Trinity College, Dublin – a highly prestigious university – has been able to welcome students with intellectual disabilities within its Centre for People with Intellectual Disabilities since 2004. In conversation with the author, the head of the Inclusive National Higher Education Forum (INHEF) in Ireland suggested that the more secure the academic institution is in its status as being highly regarded, the less threatening it is to introduce inclusive programs and options (personal communication, 3 November 2022).
Gathering support from every sector in the UK is paramount, from the grassroots as well as government ministers, universities, and other interested organizations. Most important is involving people with learning disabilities in the UK in this advocacy work. “Nothing about us, without us” is the motto for inclusive research, and so too with this grassroots movement.
People with intellectual disabilities experiencing and contributing to a university can be an option; a first step is to get the issue widely discussed. There is much work to be done to inform and bring awareness to young people with intellectual disabilities, school administrators involved in transition, parents, teachers, university administrators, faculty, and society as a whole. An alumnus of the Melissa Riggio program commented: “The UK doesn’t have a disability program in there [sic] universities? Wow! They don’t know what they are missing” (personal communication, 12 March 2022). Starting now, they need to begin to know what they are missing.
Conclusion
The lack of opportunities for participation and contribution to higher education for students with intellectual disabilities, particularly in the UK and across the globe, is a civil rights issue. Florian (2019: xi) eloquently writes: “Fortunately, the idea that such people lack the capacity to participate satisfactorily in higher education is increasingly being challenged by unconditional views of their humanity, an appreciation of their gifts and contributions to society”.
In the field of education in the UK the ideology and rhetoric of “equality, diversity and inclusion” is currently in fashion and apparently of prime importance. Therefore, the UK can optimistically look forward to ableism in universities, particularly in relation to students with intellectual disabilities, being challenged. Recently, there have been small steps toward their inclusion in higher education in the UK. The movement for inclusive universities is growing with the formation and expansion of the IHE (UK) advocacy group and the work of DiversityandAbility connecting with government figures. The University of Winchester is hosting students with multiple disabilities from Sheiling College as well as exploring opportunities to integrate students with intellectual disabilities at their university in the future. We can look forward to UK universities joining the international movement to offer opportunities for inclusion of students with intellectual disabilities in higher education for the benefit of all.
This article is dedicated to the memory of Judy Heumann, disability rights activist, 1947–2023.