Facilitators and barriers along pathways to higher education in Sweden: a disability lens

ABSTRACT

The salience of education for better life outcomes is well accepted, but people with disabilities continue to be underrepresented in higher education. Building on Weedon’s approach to the intersection of impairment with socioeconomic factors, this paper identifies the facilitators and barriers encountered and/or experienced by young people with disabilities along their diverse pathways to and through higher education in Sweden. The data comes from longitudinal ethnographic case studies of persons with ADHD. While the findings show similarities in impairment-specific barriers, such as transition and inadequate support available at university, they make even more visible the existing heterogeneity among people with ADHD and the inadequacy of support structures at higher education institutions. Parents, economic security and individual factors, such as ease of learning and belief in one’s own capacity, were found to be strong facilitators. ADHD and socioeconomic disadvantage together magnified vulnerabilities and hurdles faced while aspiring to and accessing higher education. The article concludes by highlighting the urgent need for universities to change entrenched structures that perceive students with disabilities as a homogeneous group and disability as an individual problem, in order to enable participation of all.

KEYWORDS:

• disability
• higher education
• inclusion
• widening access
• ADHD
• Sweden

Introduction

People with disabilities as a group are less likely to participate in labour markets and are poorer and less healthy compared to other young non-disabled people globally (World Health Organization 2011). The salience of education, particularly higher education (HE), for better life outcomes for all is well documented, and it is not surprising that people with disabilities continue to have limited representation in HE (Eurostat 2019). This growing understanding of the importance of educational opportunities and achievement has led to recognition of the rights and needs of disabled students as learners in HE. There are now strong global mandates and frameworks to support their participation (United Nations 2006), resulting in an increasing number of students with disabilities now entering HE in many countries, including Sweden.

Weedon (2016) questions whether this increase in access to HE is equitable across socioeconomic groups and impairment types. In an analysis of administrative data from Scotland, she found that although the proportion of disabled students in HE has increased, they were mainly from middle-class backgrounds, and were likely to have a diagnosis of dyslexia. She also shows through brief case studies, how barriers encountered by disabled students in HE is further accentuated by socioeconomic disadvantage. Based on the intricate ways in which impairment and socioeconomic background intersect to shape student access, experience and outcomes, Weedon advocates for further intersectional research in HE.

While there is much evidence on the significance of socioeconomic background in accessing and participating in HE in Sweden (UKÄ 2020), there is little knowledge on how this might be impacting HE journeys for people with disabilities. The present article attempts to address this by focusing on the facilitators and barriers encountered and/or experienced by young people with disabilities, on their pathways to and through HE in Sweden. The study draws theoretically on Weedon’s (2016) approach on the intersection of impairment with socioeconomic background as a fruitful lens through which to comprehend these complex journeys.

Disabled students in Swedish higher education

In Swedish HE policy, there has long been an emphasis on widening access to and, more recently, participation in HE for a broader spectrum of non-traditional students and underrepresented groups (Anderson et al. 2018). Although disability is included, it has been given low priority, the focus being on less advantaged socioeconomic and ethnic groups. A stronger impetus to include people with disabilities in HE comes from the Swedish Discrimination Act (SFS: 2008: 567). This was reinforced in the 2015 version, where the definition of discrimination was extended beyond the physical environment to the pedagogical and social environment. This has had direct consequences for universities, which are now mandated to provide the individual support and reasonable adjustments needed to enable students with disabilities to participate in education in the same way their peers do. In practice, this policy enactment takes place through special pedagogical support services established at all HE institutions (Järkestig Berggren et al. 2016). These services are aimed specifically at reducing barriers to education for disabled students; their main role is coordination. Student eligibility for services are made exclusively on the basis of a documented diagnosis.

While there is a robust national policy framework and an institutionalised support system, assessing their impact in practice is very difficult, given the absence of specific performance indicators for disabled students. Moreover, maintaining a register over disabilities in Sweden is not permitted. Available universitysystem-wide aggregated data show, however, a dramatic increase in the numbers registered for support due to disability, from 4805 in 2008–20,150 in 2019 (UKÄ 2020). These figures are not representative of the total number of students with disabilities in HE, as not all contact disability support services and many may not know such services exist (Anderson et al. 2018).

Students with dyslexia and cognitive disabilities comprise 75% of all known students with disabilities registered for support (UKÄ 2020). While students with cognitive disabilities, like ADHD and autism, have clearly been on the rise in recent years, other reports show that the support offered to this group at the university level is not adequate (Universitets- och Högskolerådet 2018). In contrast, students with dyslexia seem to be more than satisfied with the support they receive.

Students with disabilities in higher education: barriers and facilitators

A steady increase in students with disabilities in HE – along with robust evidence showing that they are more likely to drop out, have lower course completion rates and are less likely to graduate than their non-disabled peers (Sanford et al. 2011) – has led to increased interest in better understanding the situation of students with disabilities who are already at university. One general conclusion in studies from a range of countries is that, despite supportive legislation, students with disabilities continue to be disadvantaged and face barriers to participation in HE environments.

Faculty members have been identified as a key barrier, showing negative attitudes towards disabled students, little understanding of differing needs, limited knowledge of how to make course content accessible and lack of willingness and/or time to make reasonable adjustments (Mullins and Preyde 2013; Strnadová, Hájková, and Květoňová 2015; Langørgen, Kermit, and Magnus 2018). Barriers in the physical environment have also been noted, such as inaccessible information and spaces (Strnadová, Hájková, and Květoňová 2015). However, it is disabled students’ own experiences of barriers in the social environment that have received considerable attention in the research. The social stigma associated with having a disability has been shown to strongly impact students’ choices regarding disability disclosure. This is more evident among those with invisible disabilities such as ADHD (Mullins and Preyde 2013), and there is evidence indicating that they are likely to be more disadvantaged, face greater attitudinal barriers and more negative peer perceptions if they receive accommodations than are individuals with more visible disabilities (Deckoff-Jones and Duell 2018).

Even the formal disability support services offered by universities have been questioned for their effectiveness (Järkestig Berggren et al. 2016), regarding both the type of accommodations offered and the implementation procedures in place. The students’ responsibility for identifying the support they need to pursue their education and negotiating with teachers to receive accommodations, as well as the inherent complexity of these processes have been noted (Magnus and Tössebro 2014; Fossey et al. 2017; Langørgen and Magnus 2018). Some have even argued that the foundational problem is the way disability support within HE institutions is organised, which is stigmatising and further marginalises students with disabilities (Grimes et al. 2019). Disabled students clearly invest more time than their peers do in coping with challenges they face in their academic studies (López Gavira and Moriña 2015); they also make greater efforts to cope with life demands outside the university, often as a consequence of their disability (Simmeborn Fleischer 2012).

While the institutional barriers for students with disabilities (Moriña 2017) have dominated the findings from previous studies, some facilitating factors have also been identified. Robust supportive relationships to facilitate participation in HE among people with disabilities have been described by several researchers (Järkestig Berggren et al. 2016; Biewer et al. 2015; López Gavira and Moriña 2015). Peers’ and faculty members’ willingness to support students with disabilities has been noted as a facilitator of academic success (Langørgen and Magnus 2018). Most importantly, the crucial role of the family in the lives of people with disabilities has been frequently stressed (Legard and Terjesen 2010; Biewer et al. 2015).

Much of the current research on disability and HE has been done from the perspective of students (Moriña 2017). While giving voice to students with disabilities is crucial and provides valuable insights, these studies have generally relied on single interviews or surveys to capture students’ experiences. There have been few longitudinal explorations of people with disabilities in HE, but those existing (Almog 2018) have tended to restrict themselves to students’ experiences and to neglect what they actually encounter. Moreover, most of our existing knowledge comes from students who are already participating in HE. As there is evidence to show that many with disabilities do not advance that far, certain voices continue to be absent in studies on disability and HE.

To address some of these identified gaps in the literature, the present article aims to investigate what facilitates and limits the paths of people with disabilities who are heading to or already in HE. The intent is to untangle the complexity of these routes, particularly in relation to how these intersect with socioeconomic background over time. To capture this and not just disability type differences, the study uses the specific lens of ADHD, an invisible disability that seems to have been more marginalised than others in both the Swedish context and research. There is much debate and critique on the existence of the diagnosis ADHD, with many arguing that it is not an impairment, but part of the normal cognitive variation existing in the population (Timimi and Leo 2009). Nonetheless, it is a recognised disability in Sweden, and is accorded the same rights as all other disabilities. What makes ADHD an even more interesting lens for this study is the evidence of it being overrepresented among socioeconomically disadvantaged groups (Karlsson and Lundström 2021).

Method

The present article is part of a research project titled Participation for All? (PAL), on school and post-school pathways of young people with functional disabilities; here it draws specifically on extensive, in-depth qualitative data collected (by the author) from five young people (18–31 years) with a diagnosis of ADHD. An ethnographic case study design was used (Merriam 2016), where retrospective, current and prospective rich qualitative data were collected over a period of two years. This includes the narratives of the young people and key individuals in their lives, informal conversations with the young people, photographs, certificates and existing documentation from schools, institutional settings and social services. The young people were also shadowed in their everyday lives, including interactions with state agencies, healthcare and other support services provided in their current setting. Having numerous meetings over time in diverse places and situations and using existing documentation to further deepen the young people’s narratives were strengths of the method, enabling a deeper nuanced understanding of the barriers and facilitators encountered and/or experienced by them along their pathways to and through HE.

After obtaining ethical approval,¹ contact was established with potential participants through, for instance, online forums, posters in public spaces and by word of mouth, the intention being to ensure diversity within the group. Of the five participants, three were female and two were male. Three were officially diagnosed as young adults, and the other two as teenagers. There was variation within the group in geographical location, family background, and living arrangements. The analysis used an iterative process through the fieldwork period, during which an understanding of the diverse routes to HE slowly developed. In the next step, the barriers and facilitators- individual, familial, social and institutional, within each HE pathways were identified. In relation to theoretical framing, specific attention was given to understanding the role of socioeconomic factors in shaping these barriers and facilitators over time.

Results

The findings are illustrated through three typified case examples, those of Emma, Therese and Simon, who represent three distinct pathways leading to HE. Each case starts with a brief description of the individual’s demographics and their educational journey, both of which are pieced together from individual narratives, parental accounts, and documentation from school, institutional settings and social services.

Emma

Emma grew up in a small city, with her parents and a brother. When Emma was one, they moved from a rented flat to a self-owned house in a well-to-do neighbourhood. Both parents have HE qualifications and have been working in the service sector, at times in leadership roles. They separated when Emma was a teenager but continued to be equally involved and engaged in her life.

Emma had faced a variety of challenges related to behavioural expectations in middle and secondary school, resulting in many difficulties. She left compulsory school with excellent grades and carried on to upper secondary school, where she continued to struggle. After graduating, like many young people in Sweden, she took a break to travel and work, returning some years later to university. She is currently studying at university.

Facilitators

Emma’s parents were found to be key facilitators in her HE journey. This started early, with the value they ascribed to university education: ‘My parents have always said to us … it has not ever been a question if I should study at university, but that I was going to study at university’.

In an attempt to reduce the obstacles likely to arise at university, Emma’s parents played a role in shaping key decisions regarding where to apply and to what programme. ‘It was we who slowly pushed her to the university she is at. She had her brother there and housing was sorted too’. Her parents’ involvement continued into university, where early during the first year they noticed that Emma was in dire need of some intervention: ‘We saw that we had to help her. We found out about her right to accommodations or whatever it’s called. Then she has to follow it up, she did, contacted them and got the extra support’. Throughout this study, the subtle forms of support – practical, emotional and educational – provided by her parents continued to be an important factor in helping Emma to make it through the various ups and downs.

Even the economic security offered by her parents has been a consistent factor throughout Emma’s life. While she has always been pushed to be independent and make her own way, which she has done, this economic security has played an important role in numerous ways, covering diverse costs such as medication, transportation, etc. and even more so in difficult phases of life prior to and at university.

One significant facilitator for Emma during her first year at university was the support she received from a mentor, a student from another faculty; this was organised by the disability support coordinator.

She really helped me. She said here’s a schedule, do different colours every day and you write in study here, lunch, meet friends … I still use it and have even developed it further. Just kind of talking, she advised me that you can't have such high demands, it will go well on assignments.

Guidance concerning how to organise and plan her time was found to be an important foundation that Emma has continued to make good use of, as was evident during the time she was followed for the present study.

Apart from these external facilitators, individual factors were identified in the analysis. Emma’s own success in education has helped her along her pathway to university. This was reflected in the grades she had received from primary school to upper secondary and then at university, which have always been excellent, although they may not have been achieved without effort. Her parents described how they had actively supported her school-related studies at home, something that Emma had both needed and demanded. Emma also seemed to have a strong belief in her own potential, abilities and competence and the valuable contribution she would make to her chosen profession.

Barriers

The transition to university was critical for Emma, but the excitement of starting was soon replaced by a precarious period, bordering on her dropping out.

I didn’t sleep, eat and was in bad state. It was horrible. First a new city, I had to make new friends and then everything was new and the studying, it was all at one time. It was too much, even though I had the practicalities all sorted.

Her parents also connected this to the baggage of previous negative experiences from educational settings: ‘Bad memories from studying is what she had with her and then a new life with other demands’.

Other barriers were connected to the university’s disability support services. Just knowing about the existence of support was the first hurdle for Emma, with information about it coming from her parents after many months of struggle. Following the first meeting with the disability coordinator, Emma received a certificate with a list of support services and suggested accommodations. This was a generic list, and to date many of the items have not been used by her. Some, like extended time for taking examinations, were often considered more of a hinder than a help, both by her and by her parents: ‘The extra time on exams is no support for her, on the contrary, it leads to more problems, she sits and complicates things. I have told her to remove it’ (parents). Because there was no follow-up from the disability coordinators, after the certificate was issued over 2 1/2 years ago, this issue has not been addressed.

The last year has also seen intensification of the anxiety and stress connected to the upcoming final research paper and Emma frequently vocalised the need for some support. While Emma had little difficulty contacting the services in the first year, the changed application procedure turned into an insurmountable barrier in the final year:

I can’t just call the coordinator or go to her office. Now I have to fill in a formal online application, confirm my personal identity number, mobile number and it just didn’t work. Then I had to get a damn app. It’s so complicated, you have to have a copy of your diagnosis and a certificate from the psychologist or something. I had done all this before, but now I have to do it again.

Therese

Therese grew up in an urban small town, in a well-off neighbourhood, with her parents and a sibling. Both parents had HE degrees and well-established careers in medicine and engineering, one in the public sector and the other in a private company. The parents described themselves as relatively well to do, having travelled extensively when the children were young, and as having a higher standard of living in comparison to others who were living in the municipality. They separated when Therese was a teenager.

Therese had faced challenges in middle school connected to behavioural expectations. This escalated in secondary school with truancy, drugs and alcohol. Therese left school with passing grades in all subjects. The ‘chaos’ continued into her post-school life, with extended periods spent at juvenile institutions. As a young adult, she had experienced numerous failed attempts to return to upper-secondary education. Many years later, through an adult education centre, she obtained the required grades to apply to a competitive programme at university and secured admission. During her university years, there have been long pauses and absences from education.

Facilitators

Therese’s parents were found to be among the facilitators along her route to HE. They had laid the early foundation for her later decision to apply to university: ‘I’ve always had this with me that you should have good grades and of course you should study further or you will end up working at ICA [supermarket]’.

The presence of Therese’s parents has been a pervading factor through her life, but their support has largely been restricted to practical and financial matters. During difficult life phases, the social and economic stability her parents offered has been important in letting Therese gradually get back on track. This is clearly exemplified in Therese’s parents’ response to her most recent pause from university:

We told her she can stay free for two years. We set up a complete independent flat for her, with food in the fridge. Picked up her things from the university town, and put them in the new place. All she had to do was move in, everything was sorted. We tried our best to create the conditions under which she could re-charge her batteries and start again, without any time pressure.

Even though Therese’s time in school has entailed many conflicts, one positive factor that comes up frequently is the recognition of her potential, which seems to have strengthened Therese’s self-confidence.

Although there has been inadequate systems and support around me to get me through school, I was always told that I can, I’m smart and competent. This is the key to where I am today, had I not heard it.

Therese reported that she had always found her school studies easy. This became even more evident towards the end of secondary school, where despite long periods of school absence, drugs and not attending lessons, she still managed to pass in all the subjects.

Certain individuals, who have understood Therese’s difficulties and/or needs, have facilitated her move towards university. For example, a teacher at an adult education centre recognised the dissonance between Therese’s potential and her performance on assignments. He offered her frequent breaks during written assessments, with an opportunity to also complement orally, leading to a positive educational experience, completion of her upper-secondary education and a desire to continue at university.

Barriers

The low academic expectations placed on Therese due to her drug use were a frequent barrier post-school, as were the limited educational options available in juvenile institutions. For someone for whom studying has always come easy, these under-stimulating settings were a clear obstacle, deflecting Therese’s trajectory even further away from HE.

They [juvenile institution] had never had anyone who had finished secondary school and didn't believe me. So, I had to do lots of diagnostic tests, and they said oh you know this, but we have no capacity for upper-secondary courses. So, I had to make silver armbands instead.

The transition to university was a shock for Therese. Studying had previously required little effort, and she lacked the strategies and discipline required to meet the demands posed by university studies. ‘People knew how to study. It was a matter of routine to go to all the lectures, read for the seminars and prepare for exams. I often felt I couldn’t do it.’

While Therese had clearly learnt to deal with these expectations better, the difficulties continued throughout her time at university, which were also observed when she was shadowed. ‘I have struggled, it’s never fallen into place … every term, I haven’t attended for long periods, missed a lot, but managed to take myself to the compulsory things, it hasn’t changed’. While there are accounts of friends and partners who have supported her during specific periods, like preparing for examinations, Therese has taken multiple long breaks. Four months prior to the most recent break she said:

I’ve been home from school for two weeks again. I’ve had a lot of anxiety, not feeling good in general, this is how it is all the time, but I know at some level I always manage to get through this, it’s happened so many times but it’s still very hard.

Therese was not aware of the disability support services available at the university. This came to her attention during her third year, when she contacted them with a specific request to access e-books but was offered audiobooks instead. She reflected on how this was of little value in meeting her needs:

… but I can’t listen to audiobooks. It doesn’t work at all for me, I need to have e-books so I can search in them … I can’t write page instructions, it sounds trivial, but I can’t handle it. I can’t sit colour coding.

One recent barrier, which became evident during the study, was her work with her master’s level dissertation. This included difficulties setting limits for the work, a supervisor who was unable to provide the needed structure, the long period of time it stretched over, together culminating in increased stress and finally resulting in another long break from university.

Simon

Simon grew up in a big city suburb living in rented accommodation, in an area where unemployment and people living on social benefits is relatively high. His mother left the family when Simon was three, and the father raised Simon and his brother. The father’s small construction company was the only source of income, but was described by Simon as adequate. The father has had severe alcohol problems periodically. Simon lives independently now.

Simon had experienced significant academic and behaviour problems starting from middle school. Various interventions had been provided within and outside the classroom, with inputs intensifying particularly in secondary school. Simon left school with hardly any pass grades. During the long post-school period, he made several unsuccessful attempts to return to education. Many years later, Simon started at an individualised learning unit at an adult education centre, studying part-time and receiving state financial support. During this period, Simon completed his upper-secondary education and was keen on continuing to university.

Facilitators

The sole facilitator that re-directed Simon’s trajectory towards higher HE was his participation in the individualised learning unit. According to both the documentation available and Simon’s own description, life prior to this had been a long phase of continuous transition, frequently moving between educational programmes, which were often associated with negative experiences and multiple failures. In his current setting, Simon has experienced study success and steadily completed his courses. He has even studied courses offered in the general system and has been surprised with his own success: ‘For history, I studied the regular course, it went surprisingly well, I managed pretty okay’.

Furthermore, staff at the individualised learning unit seemed to show an interest in Simon’s general well-being. They prevented long absences from school through minimal interventions like calling him and showing an interest in his life. They even went beyond their normal duties to assist him, among other things, with navigating and accessing the available societal support, particularly financial, that was central to his daily survival, allowing him to concentrate on his studies.

Laila [teacher] said that I notice a change in your studying, you are writing worse and can’t focus. I said I’m stressed about getting the application for financial aid sorted, the current one expires next month. She said I’ll help you with it. (Simon)

Throughout this study, Simon has experienced many low periods connected to family issues, personal concerns and his studies. However, what has been consistent is his growing belief in his own capacity for learning and his aspirations for the future. ‘I would like to get a university degree because it feels like I can prove to myself that I’m not like I was before, I can do this, become an engineer, biomedical analyst’.

Barriers

The immediate barrier identified in Simon’s re-directed educational trajectory is inadequate preparation for the transition to HE. A few meetings with the career counsellor at the adult education centre seemed to have been the only input, and they were limited to identifying what specific courses Simon needed to complete to be eligible to apply to university. Questions concerning available support at university and studying full-time were largely left undiscussed by staff and only considered by Simon some months after completing his upper-secondary school education. Following him during this process of information seeking gave valuable insights into a number of potential barriers.

Obtaining information from the right source was the first hurdle. Through e-mails, Simon was re-directed back and forth between the disability coordinator and the career counsellors at the university, faculty and programme level. In addition, the response he received from these people was restricted to formal procedures post-admission for obtaining support, rather than concerning what Simon was keen to know, as he stated in one of the e-mails: ‘I would really like to get information before I apply. I’m unsure if I can manage to study if I don’t know what and where the help is’.

The uncertainty regarding whether support would be available in the study context and what kind, came out even stronger in the face-to-face meeting with a disability coordinator, where factors like teachers’ willingness, number of students, type of course, the faculty, etc. were described as determinants of availability. At the meeting, Simon frequently expressed his concerns about not being able to get any clear response regarding accommodations:

I know everyone is different, but it would feel better to at least hear how it has been from other students who are in a similar position and also from the teachers who run the courses. It would have been a security for me. It’s really tough for someone to apply and go through a lot just to find out.

While the coordinator provided a great deal of information and talked at length, there was an assumption that Simon was already familiar with the university study context, its terminology and organisation. There was also frequent reference to Simon’s own responsibilities in applying, identifying and accessing the support post-admission: ‘The support at university is based on self-studies and independent learning. And then if you need any other support you can contact us again’. These factors, together with the lack of a staff member who would be a secure and regular point of contact, were clearly potential barriers along Simon’s trajectory heading to HE.

Simon: How does it work when you help someone?

Coordinator: We only give recommendations if you have a disability

Simon: Okay but at the first meeting you decide we will meet two- three times

Coordinator: no we meet once

Simon: once a week

Coordinator: no

Simon: a month

Coordinator: We have no regular meetings here; at the first meeting we identify what support and recommendations would help.

Nonetheless, Simon was advised to take a chance and start at university. The disability coordinator showed little acknowledgement of Simon’s fragile pathway, asking him to make significant investments when unavailability of appropriate support was likely to lead to dropout as well as irreversible personal and economic consequences.

Discussion and conclusion

HE qualifications have a major impact on future labour market opportunities, making it crucially important to understand the factors that facilitate and limit people with disabilities, a group currently underrepresented and disadvantaged in HE. The findings have revealed facilitators and barriers encountered and/or experienced by young people with ADHD over time, along three distinct pathways to HE in Sweden. Each case study illustrates the intricate and multiple ways in which socioeconomic background over time intersects with ADHD, and impacts the available opportunities (or lack of them).

Despite their contrasting journeys, there were many similarities in the facilitators identified for Emma and Therese, and these were distinctly linked to their social, cultural and economic capital (Bourdieu 1986). Their academic inclination, relative ease with school-based learning, and belief in their own abilities and capacity, were clearly important to their current position in HE. Evident as well, was their confidence in the value they would likely bring to their chosen profession. These findings are highly similar to previous descriptions of students with disabilities in HE (Langørgen and Magnus 2018), and are aspects that were clearly nurtured, cultivated and strengthened during Emma and Therese’s upbringing. Moreover, both young women had engaged parents, and such supportive relationships have been found to impact academic success outcomes, self-reported educational, practical and socio-emotional gains, as well as to buffer other negative aspects of the HE environment for disabled students (Lombardi, Murray, and Kowitt 2016). Emma and Therese’s advantageous socioeconomic position had clearly enabled their journey to and within HE, in spite of the multitude of problems they had faced in and after school. Recent data from Sweden shows how, despite a decade of efforts on widening access to HE, there is little change, with a continued overrepresentation of students who have highly educated parents (UKÄ 2020), and thus the finding that the same applies to disability is not surprising (Legard and Terjesen 2010).

The socioeconomic facilitators discussed above did not exist for Simon. For him, it was the individualised teaching unit that enabled him to obtain the necessary grades and the confidence needed to aspire to university. Undeniably crucial to this transformation has been the pedagogical situation Simon has been part of, but also the presence of non-academic support central to his well-being. The question this raises is whether Simon, who is now on the threshold of applying to university, will receive adequate support that will allow him to manage at a university.

Arguably, equal access to and participation in HE for students with disabilities seem to have been conceptualised for an independent resourceful student, with a clear understanding of his/her needs and some degree of familiarity with the university setting. There seems to be a general assumption that if you are going to be in HE, then you have to be proactive, accountable for your own learning and committed to your own inclusion. Very similar conclusions have been drawn in studies from other countries (Langørgen and Magnus 2018; Järkestig Berggren et al. 2016; Magnus and Tössebro 2014), all of which point to the importance of disabled students’ own resources to access, identify and negotiate the support.

The qualities in focus here – independence and resourcefulness – are often associated with the middle class (Dovemark 2004), which is not surprising, as the disabled student population, like the general student population, tends to come from socially advantaged backgrounds (Weedon 2016). Though the widening participation discourse is forcing Swedish universities to question the entrenched structures that privilege certain groups, the same structural inequities continue to exist in the disability support services being offered.

Weedon (2016) argues that the system itself can be seen as self-cleansing, in that students with disabilities from disadvantaged backgrounds are excluded even before they get to HE in Scotland. While this probably applies to Sweden as well, the available alternative post-school pathways to HE in Sweden (Bäckman et al. 2011) clearly provide opportunities for people like Simon to re-direct their educational trajectory and aspire to better life outcomes. However, despite the long existence of university disability support services in Sweden, they seem to continue to operate based on the assumption of a largely homogeneous middle-class student clientele, giving differential consideration, if any, only in relation to specific disability categories. There seems to be little acknowledgment that people with the same disability are nonetheless individuals who are more than just their impairment. They are part of a specific context, have a past with particular experiences, different individual capacities, come from different backgrounds and most importantly differ in their economic, social and cultural capital. Not acknowledging these differences between students with disabilities could have dire consequences for young people like Simon.

Further, university-based disability support structures have largely been restricted to providing normative compensatory interventions, which though essential in many cases, are driven by an individualised model of disability, overlooking the pedagogical, structural and cultural barriers inherent in the setting (MacLeod et al. 2018). It is not surprising that these aspects are neglected, as disability has always been in the periphery of the widening access and participation discourse in Sweden, where the focus has been on non-traditional students from lower socioeconomic and ethnic backgrounds (Anderson et al. 2018). This distinction between non-traditional and disabled students seems to have been institutionalised within the university discourse as well as in the parallel support structures put in place for them. Often ignored are the intersections between these groups and, subsequently, the variation in needs, even in cases with the same disability.

Nevertheless, social advantage clearly does not always outweigh the negative impact of disability. Despite having strong facilitators, Therese and Emma experienced a precarious start at university, both almost dropping out. This is not surprising, because there is clear evidence that young people with cognitive disabilities, including ADHD, have typically had a chaotic school experience, and the transition to HE can thus lead to a number of difficulties Taneja (2021). While some like Emma and Therese, despite significant barriers, will be able to draw on their individual and family resources to somehow pull through, for people like Simon, not having these resources can be detrimental. According to Moriña (2017), offering pro-active support and attention during this transition is one of the institutional transformations that could create an inclusive university.

Even the limited relevance of the support services offered at university for students with ADHD was evident in all three cases. In practice, it is claimed that the support is tailored to individual needs, but the present findings show that the accommodations offered are often selected from a fixed list and not always appropriate to the individual’s actual needs. This mismatch between the needs of students with cognitive disabilities and the support services provided has been noted previously in Sweden (Simmeborn Fleischer, Adolfsson, and Granlund 2013). This may be one of the reasons why mentor support, which was a strong facilitator for Emma during the transition, has gained popularity in Swedish HE settings, particularly for students with ADHD and autism. Though positive, individualisation through student mentor support, may also camouflage the inadequacy of the support being offered at universities and the unquestioned ableist assumptions on who is fit to be a university student (Dolmage 2017), and thereby fails to address the need to change deeper structures.

By focusing on the facilitators and barriers to and within HE for persons with ADHD, this article has drawn attention to some of the current systemic barriers in Sweden for students with disabilities. As long as disability is regarded as an individual problem, structural and cultural barriers in the HE setting will continue to be neglected. The findings from this study add to the growing evidence on how disability and socioeconomic disadvantage together multiply the layers of vulnerability, resulting in the exclusion of some from even getting to HE. There is an emerging urgent need to recognise the heterogeneity of the disabled student population in Sweden, and to consider this in relation to ensuring effective support and equal opportunities for access and participation. Research that further disentangles the complex intersection of disability with other forms of structural discrimination within HE, is essential to transform entrenched and pervasive structures.

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No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Swedish Research Council under grant number: VR 2015-02024.

Notes on contributors

Shruti Taneja-Johansson

Shruti Taneja-Johansson is a senior lecturer at the Department of Education and Special Education, University of Gothenburg. Her research interests include disability, education and inclusion in Sweden and internationally.

Notes

1 Regionala Etikprovningsnämnden i Linköping Dnr 2016/470-31.