1. Introduction
There is a major disability education gap in the UK, with young disabled people twice as likely as their non-disabled peers to leave higher education early (Pearson et al., 2021, 1293). This disproportionate drop-out rate is largely due to the additional time and energy disabled students need for navigating ableist administrative, healthcare, institutional, and attitudinal barriers (Stodden & Roberts, 2014, 5). A growing body of research on disabled university students’ experiences has highlighted that some of the barriers impeding their full participation in university life include inefficient and under-resourced support systems; a lack of consultation on or awareness of their specific needs; extra work required to make staff aware of and implement adjustments; fear of negative reactions and treatment if they disclose their disability; having to accept less effective and often ad hoc adjustments; reluctance to complain about issues in case of a detrimental impact on their studies due to the staff-student power differential; and concern that their inclusion in any consultations on improving accessibility is “tokenistic” (Steele et al., 2023, 84).
Having experienced these issues first-hand, a student (Rajun Dhami) came to a staff member (Rebecca Smyth) at a post-1992 university in the UK 1 with the idea for a project that could draw attention to and address the systemic barriers impacting disabled university students. Together, we co-designed the research project Breaking Down Barriers. This project aimed to collect data on disabled undergraduate students’ experiences to prompt a wider discussion on the nature of higher education from a disability studies and human rights perspective, and to formulate policy recommendations on improving inclusion in higher education. However, realising this project’s aims was seriously circumscribed by the dynamics of neoliberal education (Newson, 2022). From difficulty recruiting participants to a risk of the work being depoliticised, co-opted, and simply ignored, every step of the research process was characterised by barriers – including those we had initially set out to dismantle.
The first part of this article sets out the project’s theoretical framework and methods. Part two summarises the survey and focus group’s main results. Part three discusses the results as well as the impact of carrying out this project on the researchers. The fourth and final part sets out some initial recommendations, based on the experience of doing the project and its main findings, in the form of a manifesto.
2. Theoretical Framework and Methods
As detailed in our chapter about the project (Dhami & Smyth, forthcoming), our project was grounded in international human rights law, disability studies, and critical pedagogy. The following principles formed the basis of this project: multidisciplinarity, centring a social and human rights model of disability, active participation by disabled people, and providing accessible and user-friendly information for disabled people (Goodley, 2007; Goodley, 2013; Waddington & Priestley, 2021).
2.1. Multidisciplinarity
In developing our project, we drew upon disability studies as it developed in the UK (e.g., Barnes, 2020; Goodley, 2013; Oliver, 2009; Shakespeare, 2014) and the US (e.g., McRuer, 2018); 2 gender studies and feminist disability studies (e.g., Garland-Thomson, 2005; Kafer, 2013); law, particularly international human rights law (e.g., Kayess & French, 2008; Skarstad & Stein, 2018; Waddington & Lawson (Eds.), 2018); and critical pedagogy (Freire, 1968; Giroux, 2011; hooks, 1994). These disciplines share a commitment to realising positive social change for and with disabled people by understanding oppression in systemic, intersectional terms, and by harnessing the emancipatory potential of discourses such as human rights to make change.
2.2. Centring a Social and Human Rights Model of Disability
The social model of disability is “a tool” for providing “insights into the disabling tendencies of modern society” and for developing “policies and practices to facilitate their eradication” (Barnes, 2020, 15–16). It draws a “pragmatic” distinction between impairment (a person’s physical, cognitive, or sensory difference(s)) and disability (the barriers, exclusion, and oppression people with impairments face due to ableism) to shift attention from “the functional limitations of individuals with impairments onto the problems caused by disabling environments, barriers and systems” (ibid., 15–16, 20). The human rights model of disability can be understood as complementary to the social model: the social model helps identify where change and reform are required, while the human rights model provides “guidance and requirements on policy responses to disability” that can advance social justice (Lawson & Beckett, 2021, 350).
2.3. Active Participation by Disabled People
This project would not have come about were it not for a disabled person, Raj, coming to Rebecca with his idea. We have tried to ensure as collaborative a process as possible – recognising that we are inevitably entangled (do Mar Pereira, 2017; Roy, 2017) in a range of power relations, including those of staff/student, dis/ability, race, class, and gender. To help navigate these dynamics and ensure the active participation of disabled students, we aimed to base this project on the principles of critical pedagogy, participatory action research (PAR), and emancipatory disability research.
Critical pedagogy understands learning and the research process as a site where “experience, knowledge, and power” are shaped “in different and often unequal contexts” (Giroux, 2011, 4). By challenging dominant forms of pedagogy/research, where students/research participants are passive consumers/objects of knowledge, critical pedagogy encourages student/research participants to relate their experiences to systemic issues, and so “develop the skills, knowledge, and courage to challenge common-sense assumptions while being willing to struggle for a more socially just world” (ibid., 6). In keeping with Freire’s process of conscientização (“conscientisation”/“consciousness-raising”) and the two stages of the pedagogy of the oppressed, it was hoped that by participating in the research process, students would first become aware of the systemic nature of ableism and commit to challenging it, leading to the second stage, “a process of permanent liberation” in which “the reality of oppression has already been transformed” by their awareness of it and ongoing commitment to addressing it (Freire, 1968, 54). Furthermore, critical pedagogy is integral to this project because it breaks down the traditional barrier between supposedly “expert” teacher and supposedly “ignorant” students. By adopting a critical pedagogy approach, Rebecca learned along with and from Raj and research participants: together, we were engaged in a process not of “pseudo-participation, but committed involvement” (ibid., 69).
PAR was developed by left-wing Latin American intellectuals including Orlando Fals Borda as a form of engaged, committed praxis through research (Fals Borda (Ed.), 1991). PAR is a collaborative form of “research, education, and action” driven by those impacted by the issue being researched (Pain et al., 2012, 2); it aims to democratise “who can produce, own, and use knowledge” (ibid.), and has “the express purpose of building power with/by” participants and creating positive social change (Gatenby & Humphries, 2000, 89).
Emancipatory disability research has six core principles: using the social model of disability; ensuring disabled people are involved in the research process; using research to challenge oppression; ensuring that the research methods used are determined by the needs of the research participants; centring the lived experience and narratives of disabled people in the wider sociocultural context to highlight “what they tell us about disablism and other sources of oppression”; and ensuring that the research has a positive, real-world impact on the lives of disabled people (Barnes & Sheldon, 2014).
By taking part in a research project informed by the social and human rights models of disability, critical pedagogy, PAR, and emancipatory disability research, we hoped that Breaking Down Barriers would set in motion a transformative process for us, participants, and the institution. While it was certainly an eye-opening experience for the research team and hopefully of some benefit to those who participated in the survey and focus group, at present it seems unlikely that minor changes, let alone transformation, will take place at our institution.
2.4. Providing Accessible and User-friendly Information for Disabled People
While academic “outputs” such as this peer-reviewed journal article are part of this project, we had hoped to develop resources that are more immediately accessible. We planned to develop a website featuring the initial report on our findings and recommendations, as well as information on existing resources and supports for disabled students entering higher education in the UK. However, due to difficulties recruiting participants, concerns around the project being co-opted and depoliticised by the university, and an increasing awareness of a culture of profound disengagement at the university, we decided to focus instead on writing this article, including our recommendations in the form of a manifesto at the end. It is hoped that the open access and multidisciplinary nature of this journal will provide a springboard for subsequent discussions and collaborations with those across academia, advocacy, and activism. We welcome you to contact us using Rebecca’s email address provided at the beginning of the article.
2.5. Methods
This research project used mixed methods research, combining quantitative research (the survey) and qualitative research (the focus group). The overall research project foregrounded qualitative research methods. It was structured according to Hennink et al.’s (2020, 4–6) qualitative research cycle, consisting of interrelated design, data collection, and analytic cycles. We also drew upon Liamputtong’s work on “sensitive” qualitative research (2007) and focus group research (2011), read in conjunction with Darko’s (2021) critique of using terminology such as “hard to reach”, “vulnerable”, “challenging”, “disadvantaged”, and “marginalised” groups. For us, disabled people are not “challenging” or “hard to reach”; they are, however, underrepresented and misrepresented in participatory, socially engaged research.
We co-wrote the survey questions (Appendix 1) and focus group questions (Appendix 2), drawing upon existing literature (Beauchamp-Pryor, 2007; Merchant et al., 2018; Policy Connect, 2020; Riddell et al., 2005; Weedon & Riddell, 2009) and our own experiences and initial observations.
The project was granted ethical approval by Birmingham City University’s Business, Law, and Social Science Faculty Ethics Committee. All data is stored securely in line with university policy and national legislation, and it is only accessible by the research team. The survey was sent from a university staff email to university student email accounts. Initially the intended sample was second-year Law students only, but due to low engagement, ethical approval was obtained to expand the call for participants to the faculty’s entire undergraduate cohort. We posted Moodle announcements on core module websites and spoke at two core undergraduate Law lectures about the project, inviting students to fill in the survey.
Before beginning the survey, participants had to read and agree to a statement on informed consent that detailed the project’s aims, methods, and how their data would be stored and used. Participants were able to opt out of the survey at any time by quitting it. At the end of the survey, participants were invited to opt into the focus group. Initially, 15 students expressed an interest in participating in the focus group. We organised a focus group in an accessible room on campus at a time that suited all participants’ availability, booked catering tailored to dietary needs and preferences, and sent several reminders of the day, time, and location. Only one participant attended. As a result, we organised a second focus group, but this time no participants attended. We decided that we would try one more time to hold a focus group – online this time – and, if we still had no participants, to adapt the project so that we could realise at least some of its aims. Fortunately, three participants agreed to attend a focus group organised online using MS Teams. We are very grateful to them for their time, insights, and a wonderful conversation. Raj facilitated the focus group while Rebecca took notes. Focus group participants received a £15 Amazon voucher.
3. Results
3.1. Survey
According to the most recently available statistics, around 19% of home students are disabled (Disabled Students UK, 2023, 4). The Faculty of Business, Law and Social Sciences at our university has around 2000 students, 9% of whom identify as disabled. 3 Thirty participants, or 1.5% of the student population, completed the survey. Strategies for increasing survey participation in the future are discussed in part 4 (discussion and reflection). Despite only a small number of students completing the survey, the responses provide important insights into some of the issues disabled students face at university. They also resonate with previously conducted research on the topic.
The average age of respondents was 19. Twenty-three participants listed their gender as female, six as male, and one as non-binary. Fifteen respondents listed White as their race/ethnicity, six listed Black, six listed South Asian, and three listed mixed race. Our student body is comprised of majority women and those attending university straight from school, so the gender identities and age range are broadly representative of the cohort. However, given that our faculty has a slight majority Black, Asian and Minority Ethnic (BAME) student body, 4 the disparity in ethnicity is of note. It is widely known that universities have excluded and continue to exclude “othered” groups (Barnes, 2007), including those from minoritised racial and ethnic backgrounds (e.g., Arday & Mirza (Eds.), 2018). Therefore, this slight divergence between student body profile and survey participant profile highlights areas for future research, including the barriers that disabled students belonging to ethnic minorities face in the transition from further to higher education, why they were less likely to participate in the survey, and what internal or external factors prevented these students from identifying themselves as disabled and/or being identified as disabled by existing systems.
The majority of participants (17) listed a mental health condition for impairment, followed by learning disability (12). A total of seven respondents stated that their impairment was either physical or sensory, and three respondents described their impairment as a long-term health condition. Nine respondents listed multiple impairments. The preponderance of mental health conditions over physical and sensory impairments also highlights areas for future research, including whether students with physical and sensory impairments are less represented in higher education, or why they were less likely to participate in the survey (for example, due to accessibility issues we did not account for or not feeling comfortable disclosing information about their impairment).
Most participants (16) did not share information relating to their impairment with the Universities and Colleges Admissions Service (UCAS) when applying for a place at university. Thirteen respondents provided reasons as to why: two respondents did not apply through UCAS and so the question was not relevant, six respondents only became aware of their impairment(s) while at university, two felt that they “would be treated differently” or were dissuaded from disclosure, two did not see their impairment as a disability at the time, and one felt “the effort required” to provide documentation proving their impairment “wasn’t worth the result”. Of the 12 respondents who did share information about their impairment with UCAS, eight did so in the belief that it would make the university aware of their impairment and enable them to access support systems upon arriving at university. Two respondents did not give a reason for sharing the information with UCAS, one respondent stated that they provided the information because it was requested by the UCAS system, and one student stated that they shared information about their impairments “in the section about myself because mental health disorders are part of myself”.
The majority of respondents (24) disclosed their disability to the university. Seventeen respondents cited gaining access to support systems as their reason for doing so. Three respondents stated that their disability began to negatively impact their studies, and it was at this point that they disclosed their disability rather than when they enrolled. Four respondents reported that they did not disclose their disability to the university, with one respondent stating “it would be a hassle and I don’t really like telling people”; one participant found that the support provided through the support summary process was actually counterproductive; and one participant cited uncertainty about the benefits of obtaining a support summary and concern that disclosing their disability would affect their employment prospects.
When respondents were asked what the biggest barriers were in the transition from further to higher education, the majority of respondents (18) selected “loss of support systems (at home/school)”. This is potentially indicative of a lack of mechanisms to facilitate continuity of support between school/college and university. Nine respondents selected “obtaining specialist equipment or other supports”, seven selected “applying for the Disabled Students’ Allowance (DSA)”, and five indicated that “accessibility issues on campus” constituted a barrier. Four respondents highlighted the process of applying for reasonable adjustments as an issue. Other barriers included finding accessible accommodation and the pace of teaching.
The main physical barriers identified by respondents were a “lack of accessible toilets”, “insufficient lifts” (three each), and “lifts not working” (two respondents). Eight respondents had issues with whiteboards and visual aids. Other issues identified by respondents were “insufficient lighting” and “few spaces to calm down due to sensory overload”. To address these issues, 26 respondents selected “staff training in inclusive teaching methods and technologies”, six selected “more accessible toilets”, six selected “more ramps”, and six selected “more lifts”.
The main bureaucratic/administrative barriers identified were confusing procedures (16 participants), a lack of communication/delays in getting responses (15 participants), and delays and long waiting times in receiving supports (six participants). As proposed solutions, 23 participants selected “clearer guidance on policies and procedures”, 19 selected “more disability support team staff”, and one participant suggested “in-depth training on inclusive practices”. In the further comments section at the end of the survey, two participants expressed frustration with staff’s lack of awareness of or willingness to follow support summaries: one described procedures as “long and tedious”, and another described the extenuating circumstances procedure as “degrading”.
Twenty-four respondents – 80% – stated that a lack of awareness among staff and peers was an attitudinal barrier, and five identified explicitly negative attitudes among staff and peers as an issue. Under “other”, participants listed a lack of time and energy for looking into support. To address attitudinal barriers, 21 participants chose “training/awareness raising for staff and students”, 19 chose “including disability issues on the curriculum”, and 17 chose “events/campaigns/workshops by the students’ union, clubs, and societies”.
3.2. Focus group
Three students participated in a two-hour focus group online. All three were Black women in their twenties. We first discussed experiences in sixth form/college, before moving onto the most challenging issues they faced in their first year at university as disabled students, whether they feel welcome or a sense of belonging at university as disabled students, what changes could improve their experiences, and what a good education – broadly defined – means to them.
The focus group transcript was analysed using thematic analysis and interpretative phenomenological analysis (IPA). These qualitative approaches to data analysis are focused on exploring the dominant themes underlying an interview/discussion, and on how individuals experience particular phenomena, respectively (Braun & Clarke, 2006; Pietkiewicz & Smith, 2014). As such, they were the most appropriate methods for identifying some of the common barriers students face, potential means for overcoming these barriers, and foregrounding their personal, lived experience as the basis for policy recommendations. Such an approach to data analysis is in keeping with the research project’s commitment to emancipatory disability research, PAR, human rights, and critical pedagogy.
The three main themes we identified were coping with the emotional impact of living with a disability, internalised ableism, and systemic ableism; the difficulties of dealing with impersonal, under-resourced, and understaffed support services; and the interaction of disability with wider systemic issues such as the increasingly neoliberal nature of education.
One of the most poignant themes to come out of the focus group was how all the participants and Raj grapple with having to adapt to a system that is not designed with them in mind, and how this often leads to not just frustration, hurt, and alienation, but also “resenting” their disability. For some participants, finally having a diagnosis of a particular impairment was initially a relief – as one participant put it, it provided “validation that I’m not making it up, this thing is real” – but it also immediately prompted concerns about how to cope with studying, continuing part-time work, or obtaining decent work after their studies. Participants cited “misconceptions” among family members and across wider society of their impairment as being nothing more than laziness, pitying looks from strangers, and having to constantly remind university staff of their specific needs as all contributing to “a feeling of me being the other”, of having to make non-disabled people “feel comfortable” around them, and of their impairment being an individual problem for them to solve alone.
The emotional impact of coming to terms with having impairments and the implications of this for life at university and in general came out strongly during the focus group, too. As one participant said, “It’s a lot to deal with, whether you’ve had it for years or it’s a recent thing. It’s really a rollercoaster, a rollercoaster of emotions every day.” Raj and focus group participants all agreed that having more support with the “emotional aspect” of living with a disability would make their time at university easier, for example, in the form of readily available counselling tailored to disabled people. A participant who had completed the official university procedure for obtaining support stated that “more elaborate support summaries” that were “not just specific to studying” but also detailed “mental and emotional wellbeing” would be helpful.
However, alongside these negative emotions and experiences, participants also showed an awareness of their value as disabled people, and a sense of humour and defiance in response to attitudinal barriers. One participant astutely noted that the environment was operating “to make us feel we’re not worth things even though we know we are”, and another emphasised how she wanted every disabled person to know “you’re capable, smart… all these other things”. When reflecting on a pitying look from a passer-by, one participant laughed and said, “Am I a puppy or something? Like bro… you feel sorry for me? I don’t need you to feel sorry for me!”
The participants’ perceptions and experiences resonate with previous research identifying how ableism in higher education creates feelings of stigma and alienation (Riddell et al., 2005). It also speaks to the constant navigation of identity in a system that has yet to transition from an individualist, welfare-based understanding of disability to a rights-based/social model approach (ibid.). As will be discussed in greater detail in the recommendations and manifesto, these students’ experiences highlight the importance of challenging negative assumptions about disability, and how these assumptions influence and are perpetuated by ableist systems.
While two of the focus group participants felt they had received reasonably good, personalised support while at school (both in general and in relation to their disabilities), the general consensus among the focus group participants was that disability support at university left much to be desired. One participant did express appreciation for her one-to-one conversation with a disability advisor who was attentive, empathetic, and helped her access necessary support, but as another participant put it, “I don’t feel like it’s substantial enough”. In her experience, she felt that she “never really met anyone” from the disability team in a meaningful way, and questioned “if people on the team actually understand and relate to people they’re trying to help”. This suggests that the quality of support varies considerably depending on the member of staff a student happens to meet or have assigned to them.
The overall impersonal nature of the disability support service also manifested in the lengthy, at times confusing procedures students had to engage with to obtain a support summary. One participant observed the “irony” of being “sent back a long form to fill in” when she was seeking help with completing such tasks due to ADHD. She also expressed disappointment that nobody had followed up when she did not complete the form in the initial specified time frame. When faced with a long process and the prospect of NHS wait times, the participant said she got “discouraged” and decided to “just try to do it the way I’ve been doing it instead of going through all these processes”.
Raj and focus group participants also experienced issues with ensuring the specific supports they were supposed to have arrived on time and were consistently available. One participant found that “although the DSA has really useful gadgets, it takes ages to get to you” – indeed, she had to wait 12 weeks, the length of an entire semester, for the aids she needed to arrive. Additionally, the DSA only provided access to some items she needed, but not all of them. As a result, she had to buy the equipment she needed from Amazon and figure out how to make adaptations herself. Raj had to liaise with disability support, timetabling, estates and facilities, the undergraduate course director, and his personal tutor to ensure the adjustable desk he needs was provided, and even then, the desk was regularly moved or did not work.
The red thread running through these observations is that disability support services at university need to be better resourced, staffed with adequately trained people suited to the role, coordinated, and adapted to recognise and meet students’ needs. As we described in our chapter on the project, this is particularly challenging in the context of the neoliberal university, where “bureaucratic and administrative processes” have mushroomed “in the name of improving efficiency but in reality creating fragmentation, complication, and alienation” (Dhami & Smyth, forthcoming). Fragmented, underfunded university administrative services result in a lack of continuity in relationships or opportunities to build a relationship with a supportive member of staff, especially when many of those staff are on precarious, short-term/part-time contracts with ever-increasing workloads (ibid.). This is detrimental to all staff and students, undermining the sense of community that should underpin university life. It impacts disabled students even more who, along with having to adjust to the typical challenges of studying at university, “are required to address, negotiate and resolve a number of difficulties by themselves”, placing “considerable extra demands on disabled students” (Riddell et al., 2005, 112).
In response to the question of what education should be for, participants expressed a desire for an education system conducive to “the pursuit of knowledge”, “unlocking creative abilities of everyone, unlocking the thing they’re passionate about”, and “expanding your knowledge of the world, possibly changing things in the world”. In many respects, this resonates with a critical pedagogy understanding of education. In contrast to this understanding of what education should be for, as students in general and disabled students in particular, they felt that higher education was often “one-dimensional… just about getting qualifications so that you can get a job and that be your entire life”.
Focus group participants highlighted specific issues with the current approach to higher education as including the pace of the academic year, the heavy focus on assessments and the narrow nature of those assessments, the often passive and impersonal methods of teaching and learning, and staff being unaware of, forgetting about, or otherwise not using their support summaries when designing materials and teaching. In the words of one participant:
It’s definitely been annoying for me – some lecturers/seminar leaders don’t get sent it [the support summary]… then I have to sit there, they’re teaching, and I’m just like “BRUH”. I can tell they haven’t been sent it – handouts aren’t adapted into a format I need… I’ve had that experience of lecturers and seminar leaders not being sent the support summary or just not reading it for whatever reason; they don’t know I have a disability, I have to raise my hand and explain that yeah I’ve got a vision impairment and ask if they’ve read support summary… it’s been kind of annoying, definitely.
To address these issues, participants stated that they would prefer the semester to be longer, enabling them to take more time on specific topics and assignments, and to get to know their classmates as well as their seminar leaders/lecturers better. They also expressed appreciation for academic staff who “try to relate one on one with everyone”, and who make “visible efforts” to make materials and classes engaging and accessible.
The frustration and dissatisfaction with this fast-paced, assessment-focused, and employment-focused approach to education contradicts claims by upper university management and politicians that semesters and degrees need to be shorter and entirely focused on enabling graduates to access the market economy as employees and consumers (ibid.; Adams & Allegretti, 2023; Connell, 2019). Massified, neoliberal higher education “is not conducive to taking one’s time as needed, thinking critically, or building meaningful relationships and communities” (Dhami & Smyth, forthcoming). It negatively impacts all students and many staff in the form of an overweening focus on metrics; a lack of flexibility with time and deadlines; increasingly complex bureaucratic systems to navigate; and a lack of continuity in relationships with peers and staff due to larger class sizes and fewer staff. It intersects with ableism and disablism to compound the exclusion and alienation disabled students (and those experiencing other forms of oppression) experience. As one focus group participant put it, “I don’t feel welcome”. The next two sections set out some potential routes for addressing this exclusion and alienation.
4. Discussion and Reflection
In many respects, the survey and focus group simply confirmed what we suspected based on our own experiences at the university and engagement with the literature. Nevertheless, we believe our research offers an up-to-date account of ableism in higher education, and how it manifests in institutions like post-1992 universities that are at the sharp end of neoliberal approaches to education.
Disabled students are not being provided with the support they need and deserve and to which they are legally entitled. As illustrated by the survey and focus group, students are reticent to disclose information about their impairments when applying for a place at university but, once they have obtained a place, many actively seek out support so that they can perform to the best of their abilities. However, support services are often confusing, fragmented, and impersonal. In addition, building design, semesterisation, large class sizes, and staff not receiving or paying attention to support summaries reinforces a sense of not belonging.
When reflecting on whether or not we met our project’s overall aims – to identify barriers facing disabled university students and to identify strategies for dismantling those barriers – we feel at best ambivalent. We have certainly identified multiple, overlapping barriers and the need for systemic change to address them. However, our third aim and the one we perhaps value most – setting in motion this systemic change through mobilising a group of engaged students and staff with shared aims – has yet to be realised.
Perhaps one of our main findings is the profound emotional toll it takes when trying to undertake socially engaged research in an environment that is not conducive to it. It is difficult to describe without sounding melodramatic – words like “humiliating” and “devastating” might seem too much, but they describe the sinking feeling we felt when no-one responded to the survey, or when people did not turn up for the focus group not once but twice.
We feel no anger towards or disappointment in those who did not participate in the survey or focus group; we are acutely aware of the different issues they face, such as juggling their degree, part-time work, caring responsibilities, and the ableist administrative, healthcare, institutional, and attitudinal barriers that characterise their daily life. Instead, we understand the lack of engagement by potential participants as symptomatic of a wider culture of disengagement at our university and many others that is a direct consequence of neoliberalism: university fees, the rising cost of living, and long commutes impede many students from regularly attending their scheduled classes, let alone engaging with any additional university activities such as clubs, societies, and research projects. Many students do simply see their degree as a means to an end, or only have capacity to approach it in that way due to the competing demands on their time and the prospect of a depressed, competitive labour market. As Raj wryly noted, “I didn’t think one of the biggest barriers to doing this research project would be actually doing this research project.”
We were under no illusions that our small research project was going to immediately transform our institution or higher education, but we did hope it would create some momentum around disability rights in our university. However, as time went on and we experienced difficulties in recruiting participants, we realised that we would simply be causing ourselves more hurt and disappointment if after data collection and analysis we tried to publicise our findings or bring our recommendations to various branches of university administration. We did not want to organise a launch event that no-one attended, or have a series of meetings leading nowhere. As a result, we agreed to focus on writing this article and hope that it serves as a springboard for meeting and working with others in the field.
As to whether we fully abided by the six core principles of emancipatory disability research, Rebecca wonders if different research methods would have been better suited to the needs of potential research participants, and we both feel that the research has yet to have as much of a positive, real-world impact on the lives of disabled people as we would like. We decided to use a survey and focus group because this approach had been taken by similar projects and they were methods we felt we had the requisite skills and experience to undertake. In the future, we will explore alternative approaches to engaging with research participants, such as more concerted (and repeated) invitations to complete the survey; considering incentives such as a voucher for participating in the survey if budget allows; and hopefully having the time and funding to meet with participants more than once and reimburse them for their engagement each time. This could potentially build a greater sense of rapport, community, and momentum, and help us identify other ways to work together beyond the traditional focus group model.
There were some moments of affirmation and confirmation that what we were doing and hoping to achieve resonated with disabled students, indicating that our project potentially did have some positive, real-world impact on our participants. At the end of the focus group, the participants said that “it felt good to have an open space” to discuss disability and “what it’s like, living with it, studying with it”; one participant commented that “normally I feel I have to fight to be understood – here in this focus group, I didn’t have to do that”. In many ways this was a bittersweet “finding”. It confirmed what we suspected: that disabled students face many barriers, and that being unable to talk about them freely is often a barrier itself.
Based on our findings and experiences, we have developed the following set of recommendations in the form of a manifesto. We welcome others adapting and sharing it. We see it as very much a starting point and work in progress. Ambitious and far-reaching, it serves as a starting point for thinking about higher education differently, and for starting to implement the specific measures needed to realise these aims in specific contexts.
5. Recommendations: A Manifesto for Breaking Down Barriers
Education systems, including higher education systems, are inherently ableist. While working to dismantle, transform, and reimagine education beyond the ableist and neoliberal paradigm, universities should work towards realising the following:
5.1. Buildings
Design new buildings and refurbish existing buildings in line with the principles of universal design (RL Mace Universal Design Institute, 2023).
Provide adequate toilet and changing facilities on all floors and in all buildings.
Install ramps and an adequate number of regularly serviced lifts.
Pay attention to signage, acoustics, lighting, colour, furnishings, and floor coverings so that the interior and exterior environments are easy to navigate and pleasant to be in (Steinfeld & Maisel, 2012).
Actively and meaningfully involve disabled people in the design and renovation of the campus.
5.2. Services
Ensure adequate funding and staffing of disability support services.
Ensure disability support service staff are adequately trained and remunerated.
Design mechanisms to facilitate continuity of support between school/college and university, for example, having a dedicated member of school staff responsible for liaising with a dedicated university staff team on incoming students’ support needs.
Streamline, centralise, and rehumanise administrative procedures.
Provide a centralised, easy-to-access, well signposted “database” for accessibility information.
Provide mandatory, meaningful training to all professional services staff on inclusive work practices.
Provide tailored, meaningful support to disabled professional services staff.
5.3. Teaching
Reduce class sizes.
Provide mandatory, meaningful training to all staff on inclusive teaching practices.
Base teaching on the principles of inclusive and critical pedagogy.
Provide tailored, meaningful support to disabled teaching staff.
Incorporate universal design principles into designing materials and teaching (Accessibility at UB, 2023; British Dyslexia Association, 2023).
Include disability rights and issues on the curriculum.
5.4. Research
Engage with disability studies and bring it into dialogue with one’s own discipline(s).
Where appropriate, engage in emancipatory disability research, but be mindful of not co-opting or instrumentalising the research, activism, and lived experience of disabled people for one’s own professional gain.
Provide tailored, meaningful support to disabled research staff.
Where possible, communicate one’s research in accessible, open-access fora.
6. Conclusion
Undertaking this research project left us both feeling angered, tired, and disappointed – but not defeated. While we both need some time to sit with the impact this project had on us personally, and plans for scaling it up have been set aside for now, the experience has strengthened our commitment to challenging intersectional oppressions and their exacerbation by the neoliberal university.
Rebecca: I would welcome the opportunity to work with Raj again. I will always be grateful that he felt he could come to me with the idea for this project and that we were able to work together on it. Although managing the research project was an emotionally intense experience for us both and the outcomes were not what we had hoped for, it was a joy to work together. I use the word “joy” deliberately: not simply to refer to our great conversations, which often included a lot of laughter, but also to pay homage to feminist (particularly Black and women of colour feminist) articulations of joy and radical happiness as resistance (Connell, 2019; Dillard, 2019; Segal, 2017), as something we feel when we feel fully acknowledged and respected (Dillard, 2019), as something that is produced by nurturing and strengthening our connections with each other and with the world, serving as a catalyst for imagining and striving towards alternative – and even utopic – spaces and futures (Rottenberg, 2018).
I am sad and angry that Raj’s first experience of socially engaged research was such a difficult one – he deserved to learn about the ups and downs of the research process in a far less painful way. He deserved better. We both did. The staff and students at our university, at universities across the UK, and worldwide deserve better.
Raj: I share Rebecca’s sentiments. The difficulties experienced during this project have made me doubt my competence. I feel like I have let the disabled community down through my inability to make this project as impactful as it deserved to be. However, despite these feelings, this project was a liberating experience, as it marked the first time that I felt I was allowed to express myself and think outside of the restrictions of a seminar. Additionally, to have worked with Rebecca, who understands the need for tangible change and made me feel listened to, is something for which I am tremendously grateful.
I started this project because I wanted to create a fairer world for disabled people. I remain steadfast in my belief that this goal can be realised. The flame of resistance has not been snuffed out yet; future research and engagement will allow this flame to burn brighter than ever before.