Category: disability

  • Why is it so difficult to make reasonable adjustments when assessing disabled PGRs?

    Why is it so difficult to make reasonable adjustments when assessing disabled PGRs?

    Universities are required under the Equality Act 2010 to make reasonable adjustments for disabled students. While it’s often much clearer how to do this for undergraduate students and postgraduate taught students who have coursework and written exams – for example, by giving them extra time or a scribe – support for postgraduate research (PGR) students is far behind.

    Many universities and staff are less clear how to make adjustments for PGRs during supervision, when reading drafts of thesis chapters, and then for the traditional oral viva, which is problematic for many as it relies on instantaneous cognitive processing, fluency and other skills. The Abrahart vs University of Bristol case, in which a student died by suicide after being refused reasonable adjustments to a mode of assessment, highlighted just how critical this issue has become.

    Some universities and academics have expressed concerns that making adjustments for disabled PGR students will somehow “disadvantage” non-disabled students. This misunderstands the provisions of the Equality Act. Reasonable adjustments are a unique legal duty in relation to disability which go some way towards reducing the barriers that disabled people encounter on a daily basis.

    Cultural barriers

    Cultural beliefs – including that PGR study is “supposed to be difficult”, that overcoming the struggle is part of the achievement of obtaining a doctorate, and that adjustments devalue the doctorate – all contribute to unhelpful attitudes towards disabled PGRs and institutions meeting their legal obligations. The still widely held view that a doctorate is training the next generations of academics, limited oversight on progression, lack of consistent training for examiners and supervisors, and the closed-door nature of the viva indicate the cultural nature of many of the barriers.

    The recent work within universities on research culture, equality, diversity and inclusion, and widening participation has in many cases focused on everything other than disability. Where disability is considered, it’s often in relation to neurodivergence. Neurodivergent people may find themselves objects of fascination or considered difficult and a problem to be solved, rarely simply as human beings trying to navigate their way through a society which seems to have suddenly noticed they exist but is still reluctant to make the necessary changes.

    At the PhD viva, often the centring of the examiners’ experience takes priority – rigid arrangements, and the presumed importance of meeting examiners’ expectations, appear very much as priorities, leaving disabled PhD students without a voice or agency or made to feel demanding for simply suggesting they have legal rights which universities must meet.

    Mode of assessment or competence standard?

    The Disabled Students Commitment Competence Standards Guide clarifies that the Equality Act’s reference to the duty to make reasonable adjustments to any provision, criterion or practice (PCP) which places disabled students at a substantial (i.e. more than minor or trivial) disadvantage applies to modes of assessment. It is an indictment of entrenched cultural attitudes in the sector that it took the death of a student after being denied adjustments she was legally entitled to for this distinction to be clarified.

    Many in HE defend the current approach to PhD assessment as being a necessary way of assessing the types of skills a PGR would need as an academic. However, the QAA level 8 descriptors don’t specify a particular mode of assessment, or that the ability to communicate “ideas and conclusion clearly and effectively to specialist and non-specialist audiences” relates to academic contexts either solely or primarily, nor do they specify that assessment relates to whether or not examiners believe the candidate is “ready” for employment as a lecturer.

    The purpose of PhD assessment is to assess whether a candidate meets the assessment criteria to be awarded a doctoral degree. While the question as to whether these level 8 descriptors remain appropriate to assess a PhD may be valid, introducing additional unspoken criteria such as assumptions about academic career readiness is unacceptable for all students, but particularly so for disabled PGRs due to the constant demands on them and cognitive load required to navigate an already unclear system.

    Unhelpfully, the QAA characteristics statement for doctoral degrees asserts that “all doctoral candidates experience a similar format – that is, an assessment of the thesis followed by the closed oral examination.” This could conflict with the legal requirement to adjust assessment for disabled and neurodivergent students, and is despite the Quality Code on Assessment reflecting the importance of inclusive assessment which allows every student to demonstrate their achievements, “with no group or individual disadvantaged”.

    Sharing this reasoning and information is fundamental to changing entrenched and often misunderstandings in the sector about what we’re actually assessing in the PhD viva and how to approach that assessment.

    What needs to be done?

    Making adjustments for individual PGR vivas is time consuming when many adjustments could be made as standard (a “universal design” approach), releasing time to focus on making a smaller number of less commonly required adjustments. Many adjustments are easy to make: holding the viva in a ground floor room, linking to already existing accessibility information, limits on the length of the viva with compulsory breaks, ensuring there are toilets nearby, training for examiners, and options about the viva format.

    While many PGRs are content with the traditional oral viva, others would prefer a written option (for many years the standard option in Australasia) or a hybrid option with written questions in advance of a shorter oral viva. Universities often raise AI assistance as being a reason that an oral viva is necessary. However, this is best addressed through policies, training and declarations of authorship, rather than relying solely on an oral viva.

    Feedback from delegates at a webinar on the topic of inclusive viva which we delivered – hosted by UKCGE – underlined the need for clarity of expectations, standard approaches to adjustments, and training for everyone involved in the PGR journey to understand what the requirements of the Equality Act 2010 are. Adjustments for “visible” disabilities are often easier to understand and make – it would be difficult to deny a deaf PGR a British Sign Language interpreter.

    Where disabilities are less visible, cultural attitudes seem more difficult to shift to make these needed adjustments. Revisions to sector documents, such as the doctoral degrees characteristics statement are also overdue.

    Put simply, it’s not reasonable to deny a student the award of a degree that their research warrants due to an inappropriate mode of assessment.

    The authors would like to thank Charlotte Round, Head of Service for Disability Support at the University of Nottingham, for her involvement.

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  • Why is regulation on disabled students so weak?

    Why is regulation on disabled students so weak?

    When I read university strategies, there tend to be three themes – teaching, research, and that stuff that underpins it.

    If I’m glancing through students’ union strategies, there’s almost always a version of voice, activities/opportunities, and that stuff that underpins it.

    And so it is also the case that when we think about higher education regulation in England, everything from the TEF to the Regulatory Framework tends to have a triangle too – there’s experience, outcomes and that other stuff.

    The problem is that the case of disabled students presents a bit of a problem for the design of the regulation.

    Whatever the current design or theory of change being deployed, the basic question that OfS asks providers to ask is – are disabled students’ outcomes worse than everyone else’s?

    The underpinning theory is that if they are, that’s bound to be because their experience is worse. And if the experience was so poor as to be unlawful, that would definitely show up in outcomes.

    But what if, despite the experience being considerably (and often unlawfully) worse, the outcomes are broadly comparable – or even better? Where does that leave regulation that tends to start with outcomes and work backwards, rather than start with experience and then feed forwards?

    A new brief

    The Office for Students (OfS) has published new research that seems to show that disabled students are increasingly dissatisfied with their university experience even as their degree outcomes improve.

    The regulator has released two documents – a new insight brief examining equality of opportunity for disabled students, and commissioned research from Savanta exploring how 150 students experienced applying for reasonable adjustments.

    The publications come via work from the OfS Disability in Higher Education Advisory Panel, which was established in April 2024 to improve disabled students’ experiences and provide expert guidance.

    The latest data reveals an interesting pattern. For full-time undergraduates with reported disabilities, continuation rates are now 1.1 percentage points higher than for non-disabled peers – and attainment rates are 2.0 percentage points higher. That’s a significant shift from 2019 when disabled students lagged behind on both measures.

    It’s worth saying that, albeit on a smaller N, part-time undergraduates and degree apprentices tell a different story. Part-time disabled students have completion rates 13.0 percentage points lower than their non-disabled peers whilst degree apprentices show a 5.0 percentage point gap in attainment. These gaps suggest that not all disabled students are benefiting equally from institutional support.

    But back on full-time students, when it comes to experience, National Student Survey (NSS) results paint a very different picture. Disabled students consistently report lower satisfaction across all seven themes measured by the survey, and the gaps have grown over the past two years.

    The difference in satisfaction with organisation and management has widened from 6.5 percentage points in 2023 to 7.5 percentage points in 2025. Assessment and feedback satisfaction gaps have grown from 2.5 to 3.7 percentage points over the same period.

    Complaints to the Office of the Independent Adjudicator (OIA) tell a similar story. Disabled students now represent over 40 per cent of OIA complaints, up from around one-third in 2023. More significantly, a higher proportion of disabled students’ complaints are being upheld, suggesting some universities are failing to meet their legal obligations.

    Six years on

    The insight brief isn’t OfS’ first disabled students insight rodeo. 2019’s Insight brief asked whether universities were doing enough for disabled students. It contained a prescient observation:

    “Many disabled students are achieving despite the barriers which remain in their way, not because these barriers have been entirely removed.

    Over time, the disabled student population has grown substantially. In 2017, 13.2 per cent of students reported a disability. By 2023-24, this had risen to 19.9 per cent of full-time undergraduates and 24.6 per cent of part-time undergraduates. Mental health conditions have driven much of this increase, growing from 0.6 per cent of all students in 2010 to representing a significant proportion of disabled students today.

    2019 focused heavily on the social model of disability and questioned whether universities had truly embedded inclusive practices into their institutional structures. It noted that whilst many providers claimed to follow the social model, in practice they still treated disabled students as problems to be solved rather than addressing environmental barriers.

    2025’s brief takes a more pragmatic approach. Rather than debating models of disability, it provides a checklist of specific actions universities should take on experience that draws on the new evidence sources – including workshops with 105 university representatives and the Savanta research to understand both student experiences and institutional challenges.

    You could call it a statement of expectations, although OfS doesn’t quite go that far.

    The Savanta research found that 43 per cent of disabled students had applications for reasonable adjustments fully or partially rejected. Of those students whose needs were not fully met, 91 per cent took further action such as seeking advice or lodging complaints. This level of self-advocacy suggests that students are fighting for support rather than receiving it as a matter of course.

    The research also revealed significant differences between mature and younger students. Mature students were much more likely to take proactive steps when their support was inadequate, with 53 per cent following up or escalating concerns compared with 31 per cent of younger students. Success appears to depend partly on students’ ability to work the system rather than the system working for students.

    Implementation delays are another indicator that students are succeeding despite rather than because of support arrangements. Over half of students who received positive application outcomes waited five weeks or longer for support to be implemented. Students with three or more health conditions faced even longer waits, with 73 per cent waiting five weeks or more for exam adjustments compared with 45 per cent of students with fewer conditions.

    Workshops with university representatives showed that only 15.2 per cent of institutions have established processes for systematically evaluating whether reasonable adjustments are effective. That suggests most universities are not learning from experience or improving their support based on evidence of what works. Students are therefore navigating systems that are not designed to continuously improve.

    And the National Student Survey data on organisation and management is particularly telling. This theme, which includes questions about whether the course is well organised and running smoothly and whether the timetable works efficiently, shows the largest gap between disabled and non-disabled students at 7.5 percentage points. If disabled students are achieving good academic outcomes whilst rating organisational aspects poorly, they must be compensating for institutional failings through extra effort.

    Disabled Students UK’s 2024 research reinforces this picture. It found that only 38 per cent of disabled students who declared their disability reported having the support they need to access studies on equal terms with non-disabled peers. It also noted that most disabled students hold back from raising access issues with their university, suggesting they are managing barriers independently rather than relying on institutional support.

    And the OIA’s annual reports note that disabled students are overrepresented in complaints and that events occurring because a student is disabled are likely to have significant and lasting impacts. The 2024 report specifically highlighted complaints about implementation of support and reasonable adjustments to teaching and assessment. If support systems were working effectively, disabled students wouldn’t need to resort to formal complaints at such high rates.

    The brief reminds readers that the Equality of Opportunity Risk Register now explicitly identifies being disabled as a characteristic indicating risk to student success, and reminds that Access and Participation Plans must address gaps in disabled students’ outcomes with specific targets – and that OfS then monitors progress against these commitments.

    But there’s a problem. Providers would have to pick those risks, and pick disabled students.

    We (don’t) have a plan

    If we look across 99 now published Access and Participation Plans for universities, 27 providers have no disability targets whatsoever across any stage of the student lifecycle including widening access.

    Then if we isolate targets related to experience (ie we ignore access), thirty-five providers have set no targets for disabled students in the continuation, completion, attainment or progression stages. This means over one-third of institutions have no measurable goals for improving outcomes once disabled students arrive on campus.

    Most that do have a target don’t have them in all three of the experience measures. And even those that have targets often have them for a subset of disabled students where the disability type suggests a gap.

    If we assume that providers have been reasonable in not selecting disabled students and/or the risks in the EORR associated with disabled students, it’s a design problem. For a start, when an issue is spread thinly across providers and you have a provider-based regulatory system, you don’t get detailed plans in large parts of the long tail – and so the actions are absent.

    But that’s not the only problem. If we then turn to what providers say they do or are promising to do and look at the aspects of OfS’ checklist that directly relate to student experience, just 39 discuss a process for students to raise issues if support isn’t meeting needs or isn’t implemented properly, and none of the others (working with and listening to disabled students, communication about reasonable adjustments, sharing information about adjustments across the institution and ensuring teaching and assessments are accessible for disabled students while maintaining rigour) go above 60.

    Even then, we tend to see descriptions of existing activity and service provision rather than a new and properly resourced intervention. After all, who’s going to put in their plan that new for this cycle is that provider complying with the law?

    Imagine if the design worked the other way. OfS – as it did with Harassment and Sexual Misconduct (first with a Statement of Expectations, then through a formal Regulatory Condition) – sets out expectations. Then through polling (or ideally, an NSS extension, again a la H&SM) determines whether students are experiencing those expectations. Then it can take both system-wide and provider-level action.

    That – as is also the case with Harassment and Sexual Misconduct – might all lead to better outcomes, it might not. But those design flaws mean that for plans to be made and action to be monitored to secure students’ basic legal rights over their HE, there have to be a decent number of disabled students at their provider, and they have to be failing. If not, no promised action.

    Checklists and ticked boxes

    Overall, we’re left with a checklist – one that represents a pragmatic attempt to provide universities with clear guidance about what they should be doing to support disabled students. The questions about personalisation, implementation, communication, information-sharing, complaints processes, evaluation and accessible assessment all address real problems identified in the research.

    But that checklist’s weaknesses reflect a broader challenge in OfS regulation of experience. The questions are framed as prompts for institutional reflection rather than as requirements with clear standards. That approach may encourage tonal buy-in from universities, but it risks allowing institutions to tick boxes without making meaningful changes. And that’s if they even download the PDF.

    The checklist doesn’t specify what good looks like in any of the areas. It doesn’t set expectations about response times, explain what effective information-sharing systems should include, or define what routine evaluation means in practice. The lack of specificity makes it difficult for institutions to know whether they are meeting expectations, or for OfS to hold them accountable.

    Nor does the checklist address the resource constraints that universities identified as barriers to supporting disabled students effectively. The workshops noted that more students are reporting disabilities, that many have complex support needs and that institutions face staff shortages and stretched budgets.

    Unlike on H&SM – where OfS says “afford this detail or don’t provide HE” – the checklist acknowledges none of the challenges nor provides guidance about how universities should prioritise support when resources are limited.

    As usual on disability, no teeth are being bared here – a list of questions to muse on, rather than requirements to meet, and no consequences for those that fail.

    To be fair, the brief notes that students can make internal complaints, complain to the OIA or take their university to court. But as OfS CEO Susan Lapworth herself said about students in general – let alone disabled students – back in 2019:

    We should… consider whether a model that relies primarily on individual students challenging a provider for a breach of contract places a burden on students in an undesirable way.

    As I say, the checklist is a useful starting point for institutional self-reflection. But without clearer standards, stronger accountability mechanisms and recognition of the resource challenges universities face, it is unlikely to transform disabled students’ experiences, and is more likely to be just another PDF whose link I look up in a few years time in another article like this.

    And crucially, the evidence suggests that plenty of disabled students will continue to succeed despite, rather than because, laws that are supposed to achieve equality.

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  • Higher education misunderstands neurodivergence | Wonkhe

    Higher education misunderstands neurodivergence | Wonkhe

    The term “resilience” is everywhere in higher education.

    It shows up in strategic plans, wellbeing frameworks and graduate attribute profiles.

    Universities want students who cope well with pressure, bounce back from problems, and adapt quickly to change.

    But this obsession with using resilience as the cure all is quietly doing damage – particularly to neurodivergent students, and risks perpetuating a culture that conflates survival with success.

    Resilience, as it is often used in policy or wellbeing guidance, makes assumptions about a universal baseline.

    All students (and staff) are under pressure to “cope” with the demands of higher education, including anything from deadlines, group work, feedback, through to accommodation moves. It is as though everyone is starting from the same place, with the same resources.

    But neurodivergent students often come into higher education already managing complex internal landscapes – sensory overwhelm, executive dysfunction, rigid routines (or lack of), social anxiety, rejection sensitivity dysphoria, and demand avoidance, to name but a few.

    These are not just barriers to learning in an abstract sense but are, in fact, daily realities.

    And when we talk about resilience without consideration of this as a baseline for some, we begin to measure students by how well they endure suffering, not how well they are supported.

    A lack of adaptation becomes lack of success.

    Surviving is not thriving

    Neurodivergent students often go to extraordinary lengths to meet the expectations of higher education.

    They may appear to be coping, attending lectures, submitting assignments, and even achieving high grades.

    But this superficial success can be very misleading. What is often interpreted as resilience is, in many cases, a form of masking, a conscious or unconscious effort to suppress traits, needs, or behaviours to fit in.

    This is not a sign of thriving – it is a survival strategy.

    Masking is emotionally and physically exhausting. It can manifest as mimicked social behaviours, hiding sensory issues, or continuing despite major executive dysfunction. Over time, this leads to chronic stress, anxiety, and burnout.

    The student may be praised for their work, but inside they are struggling to maintain the illusion. The cost of appearing resilient is often invisible to staff and friends, yet it can be devastating.

    This is where the resilience narrative becomes dangerous. It rewards students for enduring environments that are not designed for them, rather than prompting institutions to question why those environments are so difficult to navigate in the first place.

    A student who seems to be “doing well” may be on the brink of collapse. Without understanding the hidden labour behind this apparent success, we risk reinforcing a system that values endurance over wellbeing.

    Support as self-blame

    While the rhetoric of resilience is often framed as empowerment, in practice it can move responsibility away from universities and onto students, especially neurodivergent students.

    Support services may focus on coping strategies, stress management, or time management techniques. These can be helpful, but when offered in isolation, they imply the problem is that the student cannot adapt satisfactorily, rather than with the system’s failure to accommodate.

    This framing can lead to a harmful cycle of self-blame. When students struggle, with rigid timetables, inaccessible assessments, or overstimulating environments, they are told to be more resilient. But resilience, in this context, becomes a term for tolerance of unsuitable conditions.

    When students inevitably reach their limits, they may internalise this as personal failure, that they didn’t try hard enough or put enough effort in.

    The reality is that the burden of adaptation is not equally shared. Institutional structures can be inflexible, and staff may lack the training or resources to provide robust accommodations.

    This creates a scenario where neurodivergent students are expected to conform to a model of academic success that was never designed with them in mind. When they can’t, they disengage, not because they lack resilience, but because the system has failed to support them.

    This creates a vicious cycle. The student struggles. They perseverate on that as personal failure. And yet, ultimately, they are encouraged to be more resilient. And when that doesn’t work, as masking and self-management have reached their limit, this is when neurodivergent students disengage or drop out.

    Whilst national statistics are not readily available due to underreporting and also confusion around definitions, research does point to these issues. The British Psychological Society (2022) reports that due to an over-reliance on self-disclosure, as well as inconsistent support systems,

    ND students face a disproportionate amount of challenges in higher education. Furthermore, the Office for National Statistics (2021) report that only 21.7 per cent of autistic adults were employed in 2020, demonstrating systemic barriers which students may face when transitioning to work.

    They will blame themselves.

    Rethinking resilience

    That is not to say resilience is inherently bad. The ability to manage setbacks and adapt to change is fundamental but, for neurodivergents, that can only be when it is coupled with appropriate support, inclusive systems and compassionate pedagogy.

    In its current format, the discussion around resilience become a deflection. It reframes structural exclusion, such as inaccessible or rigid assessment methods, inflexible teaching patterns, and overstimulating spaces, as personal challenges that they must overcome.

    An example of this may be that many universities still require in-person attendance for some assessments. For a student with sensory or processing issues, this could effectively provoke masking, which could lead to overwhelm and/or burn-out. Despite us having the power to change it, we instead expect students to improve at surviving the experience.

    A solid example of where this has been integrated, in terms of flexibility, is the University of Oxford’s (2024) NESTL toolkit, which demonstrates how applications of moving adaptations throughout the programme can, in the first instance, support ND students, but actually could have implications for all students in terms of authentic assessment and individualised learning.

    From resilience to responsibility

    If universities are serious about supporting neurodivergent students, they must start by reframing resilience not as an individual concept but as a systemic responsibility. Rather than asking students to become more resilient, the more important question is how institutions can reduce the need for resilience in the first place.

    This begins with designing systems that are accessible from the outset. Instead of relying on individual adjustments, universities should embed flexibility into their base structures, with adaptable deadlines, varied assessment formats, and alternative ways for students to engage with learning. These changes not only support neurodivergent students but enhance the experience for all learners.

    Creating a culture of safety is vital. Disclosure should not trigger a bureaucratic process but should be met with empathy, understanding, and timely support. It would be a bonus if staff training could go beyond basic awareness and involve critical reflection on how teaching practices can embody inclusion and empower educators to make meaningful changes.

    Finally, institutions must place ND students in the centre throughout the design and review of policies, curricula, and spaces. Lived experience should not be treated as an optional perspective but as a foundation. Only by shifting from a format of individual endurance to one of collective responsibility can we begin to challenge the structural barriers that resilience discourse too often obscures.

    The myth of the resilient student is appealing and offers a neat solution to complex challenges. But it also permits institutions to bypass important discussions about structural exclusion, academic tradition and the limitations of current support models. We have to rethink the system from the ground up, and not just ask students to endure it.

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  • Just 329 students with an EHCP got to a high tariff provider last year

    Just 329 students with an EHCP got to a high tariff provider last year

    Everyone who can benefit from higher education deserves to do so. That’s pretty much what people remember the Robbins report as saying – and it is a comforting story that higher education likes to tell itself.

    But it doesn’t really hold true in the experiences of an increasingly diverse pool of potential applicants.

    The state of the art of supporting and regulating fair access to (and participation in) higher education in England has moved far beyond the (rather unsophisticated) idea of national targets and metrics. Like it or loathe it, the risk-based approach taken by the Office for Students is commendably grounded both in the experience of individual students and the academic literature.

    However a weakness of this approach is the temptation to argue that any access gaps represent a failure of higher education providers rather than taking a whole system (educational and, indeed socio-economic) perspective. When we do glance at wider problems with, say schools attainment it may not always be universities that are best placed (or adequately supported) to address them.

    And let us not be coy here – there are gaps:

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    The chart shows progression rates to HE, either to all providers or “high tariff providers” (of which more later) for each year since 2009-10. The size of the dots represent the number of students in that population, the colours represent the groups of characteristics: you get everything from measures of economic disadvantage, to ethnicity, to disability and – new for this year – care experience. We are looking at the students that might usually be expected to enter HE that academic year (so the cohort that turned 18 the previous year – those who took a year out before university or who progress after resits will not be shown as progression to HE).

    SEN and EHCP

    There’s thousands of potential stories in this data – for this article I’m going to focus on special educational needs (SEN) as a factor influencing progression.

    As you can see from the chart 21.1 per cent of students with any special educational need progressed to higher education by the age of 19 in 2023-24. This is the highest on record, but before you break open the champagne we should add that the progression rate for their peers without SEN was more than 50 per cent. And for progression to high tariff providers the gap is even starker: 14.9 per cent without SEN, 3.8 with.

    Though a traditional image of a student with SEN may be of someone who is less academically able, there are many very academically inclined students who have SEN and are able to progress to any destination you can think of if they can access the right support. Support is not exactly easy to come by, and it is very much a lottery whether support is available to a particular child or not. Progression to any higher education setting by 19 was 25.4 per cent for those with SEN who had more generalised support, and just 9.4 for those who managed to get an education, health, and care plan (EHCP).

    Again, the experience of pupils with an EHCP may make it more likely that they apply later on (and thus not feature in their cohort data) – those who do progress often need to top up their level 2 or 3 qualifications before being able to progress to the next level of study, all of which takes time.

    But just 1.5 per cent of students with an EHCP, 327 students, progressed to a high tariff provider. To me, that’s a systemic failing.

    Regional dimensions

    More so than any other characteristic, where you live (and, more germanely, where you go to school) has a huge impact on your educational experience with SEN. In Kensington and Chelsea, 45.5 per cent of students with SEN are in HE by the age of 19. In Thurrock, the figure is more like 10 per cent.

    The variation is similar for all students – 71 per cent get to university in Redbridge, 26 per cent in Knowsley.

    [Full screen]

    But this core variation (which covers everything from socio-economic status to school quality to aspirations) is overlaid by the varying proportions of students with SEN in each area, and the varying levels (and quality) of the support that can be provided.

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    Some 23.3 per cent of all students in Middlesbrough have a SEN marker. In Havering the figure is 8.85 per cent (there are some outliers with low numbers of students in total)

    What is being done?

    As Alex Grady of nasen wrote on the UCAS blog earlier this year, the many misconceptions around SEN indicating some form of “learning difficulty” that makes higher education irrelevant or impossible still persist. Students with SEN very often flourish at university, but the assumption that they will not attend higher education – so thinking around support through and beyond the transition between compulsory education and higher education often happens late or in a piecemeal fashion.

    It is comparatively rare for a university to visit a non-mainstream school, or vice-versa. There are many reasons (not least financial) for this not to happen, but there is a clear benefit to introducing students from all settings to a range of post-compulsory routes early and often. Sometimes special schools and other alternate provision partner with larger local schools to make this happen.

    Student records do not transition neatly between the compulsory sector and higher education, a situation not helped by the presumption that an EHCP extends to age 25 if you don’t go to university, but ends if they do (this, beautifully, is considered a “positive outcome”). A student may be used to assuming staff understand the best way to support them (as this is what happened at school) and feel uncomfortable or ill-equipped to effectively argue for similar support in HE.

    Universities do address this, both in highlighting the support that they offer students and in signposting what is available via the Disabled Students’ Allowance (many students with SEN do not identify themselves as “disabled”, and the variations in terminology are a recognised issue). But schools also have a role to play in preparing students for an application and choice experience that is pretty bewildering for all students.

    Additional data

    The DfE Widening Participation release is the only place where you get a definition of a “high tariff” provider – in 2023-24 this term referred to higher education providers with a mean tariff of 125.8 or above (last year this was 129.4).

    [Full screen]

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  • Welfare reforms will hit disabled students hard

    Welfare reforms will hit disabled students hard

    As political funding decisions continue to pose threats to both the welfare of disabled people and the higher education sector as a whole, disabled students find themselves caught up in a crossfire of financial cuts.

    This was the subject of many coffee-break conversations at this year’s National Association of Disability Practitioners Conference, at which growing concerns around the financial viability of supporting disabled students effectively were shared by a number of specialist staff across the sector.

    As a practitioner, and as a disabled student myself, it’s hard to shake the feeling that current support mechanisms are stretched to their limits. Without urgent investment and reform, it’s disabled students who will continue to bear the brunt.

    Earlier in the year, Jim Dickinson flagged the potential fallout for disabled students arising from reforms to Personal Independence Payment (PIP) proposed in the government’s Pathways to Work Green Paper.

    With over 100 Labour MPs signing an amendment opposing the changes, if rumours about the government’s compromise are to be believed, new students will soon lose out on some of the support that many existing disabled students are entitled to.

    In the months since the reforms were first proposed, I’ve heard from a number of disabled students who shared serious concerns about what these cuts mean for their wellbeing, autonomy, and academic futures.

    “Without PIP, I would have to drop out.”

    That’s what Alex*, a disabled student at the University of Brighton, told me. Alex currently uses their PIP to cover a number of health related costs, from “feeding tube equipment that isn’t covered by the NHS, mobility equipment and repairs, and [support to cover] additional travel costs to get to [their] appointments.”

    Sadly, yet unsurprisingly, considerations of dropping-out of university are not uncommon. Recent data within the Advance HE Student Academic Experience Survey revealed that disabled students are almost twice as likely to have considered quitting, with 83 per cent of disabled students reporting challenges related to the cost-of-living.

    In my day-job, I often encounter the mistaken assumption that Disabled Students’ Allowance has the ability to fill all of the financial gaps that disabled students may face throughout their studies. DSA can act as a vital source of support for study-related costs, but it is not designed to replace social security.

    For many disabled students, Personal Independence Payment is a lifeline for maintaining independence whilst at university. But with persistent delays and restrictions on DSA support and the proposal to restrict PIP even further for young people, many students like Alex are at risk of starting their studies without access to either.

    “I can’t work alongside my course with my health issues…”

    In my own context, full-time students are expected to commit around 50 hours per week to their studies to meet the notional learning hours set by the SCQF. Yet, in the midst of the ongoing cost-of-living crisis, an estimated 68 per cent of undergraduates now work paid jobs alongside full-time study, exposing a continued disconnect between policy expectations and the lived reality of students today. A balancing act of work and study is unsustainable for many, and for disabled students, the pressures are even greater.

    Abi* reflected this in her conversation with me: “I can’t work alongside my course with my health issues […] as student finance is so little, I use my PIP to stay afloat every month,” she says. “I wouldn’t be able to have my car, with my carer driving me – which is the only way I can get out of the house.”

    At last check, Scope estimated that disabled households require an additional £1067 per month to meet basic living costs, as a result of the many financial barriers associated with existing as a disabled person in a society that is not constructed to compensate for a wide variety of access needs. Whilst PIP is not intended as an out-of-work benefit, many disabled students rely on it to fill the gaps left by inadequate financial support. Abi’s experience reflects the additional strain placed on disabled students by the “disability price tag”.

    Accessible accommodation is “more expensive than most private rentals…”

    Systemic barriers were emphasised by a number of the students I spoke with. For Daisy* securing accessible housing has been a particular challenge financially.

    Reflecting on her own living situation, she said: “I live in a very inaccessible city and can only live in university halls,” “it’s more expensive than most private rentals, but there’s no alternative.”

    Back in Brighton, Alex* shared similar concerns: “my only option is to live in university accommodation, which costs significantly more on average than most house shares in my city.”

    These accounts reflect a wider set of structural barriers that have a direct impact on the disabled student experience. Recent data from Disabled Students UK highlighted that affordable, accessible housing is often scarce, with 46 per cent of disabled students reporting that they’ve ended up paying more for housing that met their access needs.

    And housing can’t be considered in isolation – it’s tied to the broader context of inaccessible transport, barriers to timely healthcare, inadequate personal care support, and the high costs associated with assistive equipment.

    When these basic needs go unmet, it becomes significantly harder for disabled students to engage with university life: academically, socially, and beyond. Abi shared this concern, expressing fears that the removal of PIP would prevent her from having a wider student experience: “without my PIP, I wouldn’t be able to do anything extracurricular.”

    If disabled students can’t afford to live independently, how can they fully participate in university life, let alone thrive outside of it?

    “Why can’t they see how hard I’m trying to find work?”

    That’s the question Katie* posed to me when we spoke. Preparing to undertake a PhD in Newcastle, Katie found the transition from university into work daunting and unsupported. “There’s still an expectation that you get your degree, then get a job,” she said. “But there’s very little recognition of how much harder that is for disabled graduates.”

    A recent report from the Shaw Trust highlighted the persistence of the disability employment gap amongst graduates, emphasising that the gap is not about a lack of aspiration, it’s about structural and systemic barriers.

    Katie’s experience reflects a broader trend – while much of the discourse centres around “employability” and economic outcomes, little is said about the lack of disability-informed careers support or the inflexibility of most graduate job opportunities. “Trying to find ‘disability confident’ employers reduces the job pool even further,” she adds. “Half of the jobs which could be hybrid or online aren’t. And trying to find a flexible job that allows time for medical appointments? Nearly impossible.”

    But it isn’t just about work…

    These conversations emphasise access to equitable higher education risks being eroded by benefit restrictions, ongoing delays to DSA support, and widespread cuts to university funding.

    While higher education institutions have made important strides in recent years, through the development of Disabled Student Commitment, and an increased focus on compliance with the Equality Act, service cuts across the sector threaten to undermine that progress.

    According to our research at Disabled Students UK, only 38 per cent of disabled students currently feel that their support needs have been met by their institution. As public funding continues to shrink, many universities are being forced to reassess spending, with many opting to restructure services and streamline provision. But if disabled students are sidelined in these processes, the consequences will be stark.

    In a climate of compounding cuts, institutions must take care to ensure that the interests of disabled students are not excluded from decision-making or deprioritised in budget reviews. Otherwise, we risk further entrenching inequity within a sector that prides itself on widening participation.

    At the heart of all of this is one clear message – disabled students are not asking for luxury. They’re seeking the basic conditions needed to study, participate, and succeed. If we cannot meet even the baseline needs of disabled students, at both an institutional and state level, then we need to seriously question what kind of higher education system we are building, and who it’s truly for.

    Disabled Students UK’s Annual Disabled Student Survey, the largest survey into HE accessibility and the disabled student experience in the UK, is open for responses until the end of July.

     

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  • Support for action on ethnic and disability pay gaps demonstrates our commitment to our communities

    Support for action on ethnic and disability pay gaps demonstrates our commitment to our communities

    By mirroring gender pay gap reporting, which was made mandatory in 2018, the Equality (Race and Disability) Bill would introduce mandatory ethnicity and disability pay gap reporting for large employers with 250 or more employers.

    In his foreword to the consultation on introduction of the Bill, the Minister for Social Security and Disability Stephen Timms notes that the UK is far away from achieving its goal of creating a more equal society in which people can thrive whatever their background. According to the Office for National Statistics, the current ethnicity pay gap in the UK ranges from 1.9 per cent to 9.7 per cent, depending on ethnicity and if individuals were born in the UK.

    Diving into the data, we were concerned to find that no progress has been made in reducing the median gross hourly pay gap for Black, African, Caribbean or Black British employees compared to white employees, remaining “consistent since 2012”. The disability pay gap is even more pronounced, at 12.7 per cent, having remained “relatively stable since 2014.” The lack of progress in closing these pay gaps is as concerning as the lack of awareness of the problem.

    Conversely, the practice of gender pay gap reporting will have contributed to the gender pay gap declining by approximately a quarter among full-time employees over the past decade. Greater transparency helped build the foundations for positive transformation, creating a strategic imperative to root out systemic inequalities and leading to many employers developing, and proactively publishing, action plans to close the gap within their organisations.

    In pursuing the noble aim of creating a more equal – and socially cohesive – society, the same focus must now be placed on tackling racial and disability inequalities. Economic inequalities between ethnic groups are an important contributor to social unrest.

    The government should be supported in its proposed introduction of the Equality (Race and Disability) Bill and, speaking as vice chancellor of Birmingham City University (BCU), David would encourage fellow higher education leaders to join him in lending our public support to the government for this proposal.

    There are two key reasons for higher education institutions publicising their ethnicity pay gaps in particular: to build trust with their internal community, and to strengthen authentically social cohesiveness in their local communities.

    Building trust

    BCU’s new strategy articulates a clear commitment to improve the diversity of our organisation at all levels and eradicate pay gaps. The first step in this will be to publish all our pay gaps with a clear plan to close them by 2030.

    There are persistent racial inequalities in higher education. This is demonstrated most evidently in awarding gaps for ethnic minority students and Black students achieving a good honours degrees compared to white students, at 14.1 per cent and 21.6 per cent respectively in 2024. A lack of representation of ethnic minority staff in senior positions also conveys persistent inequities. Ethnic minorities now comprise one in three undergraduate students, but only one in four (20.2 per cent) of academic staff. Their representation is even lower among professors (15.1 per cent), senior managers (9.1 per cent) and executives (7 per cent).

    The picture is more concerning in terms of Black representation in higher education. One in ten undergraduate students is Black (9.6 per cent), but only one in every roughly 27 academics share their ethnic identity. Only 1.6 per cent of all professors are black and 0.7 per cent of executives.

    In contrast to the gender pay gap, information on the ethnicity pay gap in higher education is not routinely published. Combined with the lack of proportional representation of ethnic minority staff in senior positions, the lack of published data and strategy to tackle pay gaps has caused many staff to lose trust in institutional leadership and its commitment to tackle racial inequalities. The Equality (Race and Disability) Bill would bring parity with mandatory gender pay gap reporting and offer greater transparency to our communities.

    For reference, the median gender pay gap across higher education institutions, which stands at 11.9 per cent, reduced by 4.4 percentage points since reporting began in 2017.

    Community cohesion

    Universities play a crucial role in shaping their localities and are increasingly active in strengthening social cohesion – our institutions allow (mostly) young people to study in diverse settings, enable better understanding of different cultures, encourage active citizenship, and develop graduates who are more likely to show concern over racism, be more positive towards immigration, and less likely to view feminism as harmful. Our social mobility missions break cycles of poverty, research and innovation activities drive productivity, and graduates sustain vital public services.

    Working effectively with our diverse local communities necessitates trust and the transparent reporting of systemic racial inequalities is paramount. For BCU, this means better reflecting and working in partnership with a community in which no ethnic group has a majority; the 2021 census identified that Birmingham’s population is more than twice as likely to come from an ethnic minority than the overall population in England. 51.4 per cent of people living in Birmingham are from an ethnic minority group, compared to a national average in England of 19 per cent. The data is much more profound for Ladywood, the constituency in which BCU’s city centre campus is based. Here, more than three in four (76.6 per cent) come from an ethnic minority, with the greater proportions of Asian (38.6 per cent) and Black (25.9 per cent) than White (23.4 per cent) citizens.

    Birmingham’s “super-diversity” is seen as one of its biggest strengths, the city council opining that it stems from the city’s long-standing history for welcoming people from around the world. However, we must recognise that challenges persist, most notably in terms of engendering social harmony and tackling inequality. Those two challenges are interlinked: social harmony rests on our different racial and ethnic groups feeling valued and having trust in their local institutions providing equal opportunities and equitable outcomes, regardless of background.

    Our 2030 strategy sets out a clear vision to be an exemplar anchor institution by 2030. This vision was co-created with representatives from our communities, who recognise and value the crucial role that universities like ours play in their locality. Our strategy explicitly recognises the responsibility we have in strengthening social cohesion in our home city of Birmingham.

    From speaking with many vice chancellors, I know that we at BCU are not alone in championing our civic mission. Notwithstanding this, until we collective publish data on ethnicity pay gaps – alongside action plans to overcome these – our sector may find it difficult to build and sustain trust with our diverse internal and external communities. The Equality (Race and Disability) Bill offers a timely opportunity for our sector to demonstrate its commitment to racial justice.

    My fellow vice-chancellors would do well in voicing their support through this government consultation.

    The consultation on the Equality (Race and Disability) Bill closes on 10 June and can be accessed here.

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  • Disabled students’ rights are still being ignored

    Disabled students’ rights are still being ignored

    In the context of wider financial pressures on providers, universities can be a challenging environment to work in at present.

    So, a crackdown on ensuring all disabled student support plans are both in place and implemented may have fallen to the bottom of the to-do list. Couple that with delays in the Disabled Students’ Allowance system and it’s a pretty bleak picture for disabled students.

    The findings of this year’s Office of the Independent Adjudicator (OIA) annual report echo these concerns.

    Like last year’s report, self-identified disabled students were over-represented in complaints, with the proportion rising for 2024 from a third to just over 40 per cent. Of those who did disclose details of their disability, mental health issues were the largest category selected by students (46 per cent), and specific learning differences accounted for a third.

    A bulk of complaints from students who self-identified as disabled related to support and reasonable adjustments to teaching and assessment not being implemented promptly or at all. This correlates to national trends as shown in Disabled Student UK’s annual survey of 1,200 disabled students across eight UK institutions, where only 39 per cent said they had their support needs implemented.

    Delayed

    OIA make it clear that delays to student support do happen and are not always a serious cause for concern. As they suggest, sometimes it may take a long time to identify what support works best for the student for their course of study, or the process is at a halt because a student’s application for DSA is significantly delayed.

    However, as the annual report highlights:

    there is no culture of accountability in place to ensure that disabled students receive the support that is necessary to place them on an equal footing for success with their peers.

    Additionally, the OIA recommends that providers train and support academic staff in meeting the requirements of the Equality Act, as too often academic staff have not fully understood what is required and, instead, “default to standard [teaching] practices that do not meet disabled students’ needs. As a result disabled students are often left to muddle through at a significant disadvantage to their non-disabled peers.

    Let’s recap

    Last week, the Disabled Students Commission published guidance clarifying the legal responsibilities of providers when it comes to competence standards and reasonable adjustments. Under the Equality Act 2010, providers are accountable for their acts and omissions in relation to disabled students. This includes a duty to make reasonable adjustments to ensure disabled applicants and students do not experience substantial disadvantages in comparison to non-disabled people.

    As the guidance explains, two considerations that should be used in decision-making as to what constitutes reasonable are whether the adjustment is possible and if there is a reasonable assumption that the adjustment might be effective in reducing substantial disadvantage for a disabled student.

    One of these considerations is whether a reasonable adjustment is financially viable. But while institutions must consider the total resource cost, this factor alone, according to the guidance, rarely automatically precludes an adjustment from being reasonable.

    It’s a squeeze

    A real risk here, given current financial circumstances, is that resources for disabled students continue to be squeezed, potentially making it harder to access adequate support.

    While financial strain alone is not a good enough reason not to implement a lawful duty, there is already significant evidence that disabled students’ needs are not currently being met. With a move towards self-service across student-facing roles, it paints an unpromising picture for future support for disabled students, unless something changes sharpish.

    Both the DSC and the OIA urge further signposting around competence standards for students and staff. The annual report suggests that they still instances where there is no clarity for students or staff within course documents about what competence standards will be assessed.

    If a competence standard is not defined, given that they are exempt from the duty to make reasonable adjustments, it is difficult for a provider to decide if a reasonable adjustment requested by a disabled student is, in fact, reasonable.

    Get it right

    Providers need to ensure that accurate information about competence standards and the possibility of reasonable adjustments is made available to both students and staff, including prospective students.

    Providers and individual staff are operating under strain at the moment, but it’s crucial to remember that supporting disabled students is not optional – it is a legal requirement. These aren’t practices and processes that can be prioritised based on finances, it’s a baseline, legal requirement disabled students are entitled to.

    Understandably in the current climate, some may feel resistant to adding additional responsibilities to an already heavy workload, especially as the number of students declaring a disability in recent years has increased. But addressing students’ needs proactively avoids the much greater financial and reputational costs associated with complaints and compensation. If institutions feel they don’t have the time or capacity to prioritise inclusive practices now, they risk spending a greater amount of time, money and resources later managing avoidable grievances.

    And if that isn’t enough, surely disabled students deserve better than having their legal rights to equity perpetually sidelined or ignored.

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  • Real inclusion is there for the taking

    Real inclusion is there for the taking

    Life with a disability or chronic condition is inconsistent.

    On good days, personal and professional obligations are met, and a reasonable, if not uninterruptedly good, quality of life is enjoyed – there is the mental and physical capacity to interact with others.

    On bad days, the limitations suddenly imposed lead to frustration, and obligations narrowly met, if at all.

    Interacting with others outside the immediate family is impossible, constituting a demand on personal resources which are fully deployed just trying to make it through the day.

    As a disabled researcher, staying motivated while pursuing an academic course lasting for several years while at the whim of fluctuating health conditions can be a complex and often lonely process.

    In my experience, trying to communicate this reality to colleagues and providers is met with compassion initially.

    However, a more comprehensive response over time to the shifting sands of life with a disability is often lacking. This is redolent of how professionals react to change in the workplace, when it is introduced at a strategic level – when long-established processes and systems are in place, lip service is paid to new initiatives but in reality, says psychologist John Fisher:

    …people maintain operating as they always have denying that there is any change at all.

    When everyone says – and often mean – “Poor you”, but then carry on regardless, this does little to enhance motivation for the disabled colleague for whom being at the mercy of their condition is a real, and lasting, psychological drain.

    Making a difference

    So what can a higher education provider do to reduce this sense of being a burden, and bolster motivation for disabled students, researchers and colleagues?

    David McClelland advances the theory that people are motivated by achievement (n-ach), by authority (n-pow) or by affiliation (n-affil) to varying degrees, and says the responsibility lies with the organisation to create the right conditions to motivate, arguing convincingly that:

    …any behavioural outcome is a function of determinants in both the person and the environment.

    This means that the responsibility rests with the organisation to provide optimum conditions for every individual to be motivated and to perform, and this is an on-going process – not a once-yearly day of “awareness” for a particular condition.

    The 21st of March is World Down Syndrome Day, but does sending our children to school in odd socks really transform people’s thinking about the condition? Disability support should be a strategic, year-round priority which informs the culture of organisations – and shouldn’t higher education providers, as the ultimate symbols of knowledge and understanding in our society, be leading the way?

    This is not to say that changing any organisation’s culture is a quick or an easy process. Noel Tichy and Stratford Sharman identify three crucial steps which must be followed by strategic leaders seeking transformation – “awakening; envisioning; re-architecturing”.

    The awakening stage involves a crucial shift from complacency in the status quo, by creating a shared understanding that the establishment cannot and should not continue in its current incarnation and needs to evolve. In the case of disabled colleagues, this deep understanding of the changes needed can only be achieved in consultation with those who are experiencing – first-hand and over time – the issues with the working environment and the general approach towards disability support.

    Making this a “whole organisation” approach to consultation can be an opportunity to promote understanding and integration between disabled and non-disabled colleagues; research has found this to be:

    …particularly powerful in bringing about change as it removed the onus from the individual and avoided disabled people being singled out.

    While many universities have initiatives and working groups to consult with, and support, disabled students, researchers and staff, the socio-political landscape within which we are all immersed is impossible to ignore.

    The current toxic, divisive rhetoric about people claiming sickness and disability benefit, and how they are costing the hard-working taxpayer too much money, could not be further from the positive vision of whole-organisation consultation on disability support.

    The cuts to benefits which were announced by the government last month have resulted in widespread alarm amongst the disabled community – Scope says they constitute “a catastrophe for disabled peoples’ living standards and independence”.

    The recent statement by the Secretary of State for Work and Pensions that “taxpayers are paying millions more for the cost of failure” through “spending on working age sickness and disability” actively promotes resentment and social division between those who can work, and those who cannot.

    Universities can change communities

    Against this backdrop of blame and misinformation, it is difficult for those of us with disabilities to feel that we are not viewed by at least some individuals as burdensome and problematic. However, in the absence of a cultural shift coming into universities from society, perhaps university-led initiatives can begin to build cultures which will, over time, impact their local communities.

    “Access Insights”, a project by Disabled Students UK, encapsulates this idea beautifully in their tagline, “We believe in the power of disability wisdom to better society”.

    They recognise that disabled students have a deep understanding of how accessibility can be achieved in the university environment and offers institution-specific recommendations to universities who become Access Insight members. Using a evidence-based approach, they consult with disabled students to evaluate their experiences and pinpoint what is going well, as well as what needs to be improved.

    In the same way, it is only via consultation with the disabled community and a shift in mindset away from “us and them” to “all of us together” that true accessibility in society can be achieved.

    The higher education landscape has a responsibility to set the tone and the approach to disability awareness and support – the Access Insight model provides a blueprint for how organisations can begin to consult on, and take accountability for, their strengths and weaknesses in relation to disability support.

    For me as a disabled student, I have a responsibility to speak up and show my university how they can make my course truly accessible; and my university has the responsibility to listen and to respond.

    The question now is – can there be a wider impact for communities and society, if higher education providers demonstrate what truly inclusive environments could look like? The answer is out there for the taking – one conversation, one blog piece, at a time.

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  • Supporting disabled women in academia matters. Here’s why

    Supporting disabled women in academia matters. Here’s why

    In March 2024 on International Women’s Day, I launched the Disabled Women in Academia Group.

    It is a sub-group of the National Association of Disabled Staff Networks (NADSN) – for those who identify as a woman (or non-binary) at any career stage and from any area working in universities.

    The group – set up with the support of Jacquie Nicholson and Hamied Haroon, Vice Chair and Chair of NADSN, aims to provide an inclusive space where all women feel they can join if they wish.

    Sessions take place online and each session focuses on a specific topic, or we have a guest speaker.

    I set up the group because I felt there was a gap in the market. While we already had schemes like Aurora and the Women in Academia Support Network, there wasn’t a specific space for disabled women to meet. Data from Advance HE (2024) clearly indicates both women and disabled individuals are underrepresented in senior roles at universities.

    Given this, it is therefore apparent that disabled women are going to be even more underrepresented in these roles.

    Of course, not everyone wishes to hold a senior role in a university, but disabled women deserve the right to thrive as much in the university setting as other groups.

    Leadership and aspiration

    A second reason I wished to set up the group was to enable disabled women to develop a sense that they could be leaders if that’s what they aspired to be.

    There are already leadership schemes like Aurora for women, 100 Black Women Professors NOW by the Women in Higher Education Network, and Calibre, a leadership programme to support disabled staff in higher education and the NHS.

    While this is not a formalised leadership programme or scheme, we do have discussions around leadership and career progression within our sessions. We need to be having these discussions as it is often the case that disabled women are perceived by others as less able due to the ableist nature of academia.

    Jacinda Arden in her role as New Zealand’s Prime Minister redefined what leadership is for women and demonstrated that leaders could have those traits of compassion, show emotion, and remain effective leaders. Such groups like the Disabled Women in Academia Group create that safe space when we are engaging in that process.

    The group has run for a year now and it is one of the things I most enjoy doing. I get to meet lots of different women, and we have built up a real sense of collegiality.

    I have learnt a lot about the challenges we face as disabled women and strategies to address those challenges. I have learnt about the importance of leadership and that the higher education sector needs people to be working together to bring about real change to support students and staff (see NADSN’s RIDE Higher which is developing a framework to support disabled staff in higher education institutions).

    The costs of coordination

    However, this advocacy work, on behalf of ourselves and others carries with it an emotional cost. A colleague mentioned to me a book by Katherine May ‘Wintering: The Power of Rest and Retreat in Uncertain Times’.

    Having a disability or chronic illness can bring with it uncertainty, especially if symptoms are unpredictable or we are awaiting medical treatment.

    During these times we may need to engage in a period of “wintering” – here I am not referring to the actual season of winter – Katherine May uses it as a metaphor and acknowledges we can “winter” anytime, where we focus on ourselves and develop strategies that work for us, replenish our resources and subsequently come out in the spring rejuvenated and ready to face the world again.

    For me, the Disabled Women in Academia Group provides a safe space to do this and fuels my hope of a more equitable environment for disabled women going forward.

    Acknowledgments: Thanks to Jacquie Nicholson and Dr Hamied Haroon for comments on an earlier version and supporting the work of the Disabled Women in Academia Group.

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  • Everyone can play a role in removing barriers for autistic colleagues

    Everyone can play a role in removing barriers for autistic colleagues

    The complex rhetoric around neurodivergence, ranging from the politically unhinged to persistent gas lighting, requires us to start by defining autism.

    Autism, a form of neurodivergence, is a naturally occurring neurodevelopmental variation that manifests in differences in how people experience and interact with the world.

    The focus is often on communication “deficits” and “repetitive and rigid” behaviour but, quite frankly, this focus and these words say more about how non-autistic (allistic) people interpret our behaviour and their own discomfort with the same.

    Our own experiences of being autistic are a lot more expansive and encompass autistic joy and strengths, alongside the significant and often unnoticed challenges we experience day-to-day.

    At different points in time, we both made the conscious, and somewhat fraught, decision to share our autism diagnoses in professional contexts. For the most part we were hugely relieved to be met with compassion from colleagues and a desire to support us to make the necessary changes to level the playing field.

    Yet, in the background of these positive experiences, there is a near-constant battle with systems, processes and neuronormative expectations that undermine individual attempts to be supportive.

    We wanted to share the biggest challenges we’ve faced in sharing our diagnoses and attempting to build afresh work practices and environments that will allow us to thrive.

    Attempts to normalise

    On more than one occasion after sharing our diagnoses, we’ve both been met with responses along the lines of “we’re all a bit like that though”.

    While we assume these comments are intended to “normalise” our experiences and perhaps reassure us that we’re not that different, such comments are somewhat missing the point.

    Firstly, autistic people are human too, so our autistic traits are very much part of the human condition. For example, the struggles we face in some social contexts may be experienced by allistic people sometimes.

    And our desire to seek refuge in routines is something many people can relate to, particularly in times of great upheaval. What sets our experiences apart is the depth, duration and the degree to which these experiences impact our capacity to thrive.

    Secondly, late discovery or diagnosis often comes about after a lifetime of deeply felt misunderstandings and a perpetual sense of being somehow wrong. The challenges autistic people face have very real implications such as significant impact on mental wellbeing alongside higher risks of substance abuse, accidents and offending behaviour as well as lower levels of income and education.

    Poor employment outcomes and high rates of autistic burnout are often part and parcel of being autistic. Notably, suicide is a leading cause of early death for autistic people.

    While finally getting answers to a lifetime’s worth of questions is broadly positive, never underestimate how earth-shattering a late discovery or diagnoses can be. It can completely unmoor you from an identity you worked hard to craft and maintain, often over many decades.

    To be set adrift whilst trying to carry on “business as usual” can be incredibly disorienting and well-meaning comments intended to find common ground can feel dismissive and leave us, once again, feeling misunderstood.

    To receive a diagnosis can be confirmation (or even a revelation) that you have been leaning on masks and performativity this whole time, borrowing bits of behaviour and social styles from others, in order to keep up with fast-paced workplace dynamics.

    But if our identity is a mosaic of other people’s characteristics, who exactly are we? We therefore often find that the diagnosis we hoped would answer our questions, instead serves up a hearty existential crisis. Coupled with the need to continue functioning both in personal and professional contexts, whilst running that background process, can be exhausting.

    The adjustments minefield

    Often a motivating factor in sharing an autism diagnosis is the need to access workplace adjustments, though it should be noted you don’t need a diagnosis to do so.

    What many people won’t realise is that identifying the adjustments you need, and getting these put in place, often feels like a full-time job in and of itself. We’ve both experienced scenarios where we’ve been encouraged to share what we need to work at our best, only to find ourselves somewhat stumped.

    We’ve defaulted to so many complex and energy-consuming workarounds to overcome the barriers in our environment, that it can be hard to pick apart common workplace challenges from those which come about from being part of a neurominority.

    Plus, autistic people aren’t often comfortable around change, so if we’ve established a workaround, it can be difficult to consider an alternative, despite how much more efficient it could be!

    This is the nature of having differences that are somewhat invisible – you don’t realise that everyone isn’t quietly battling the same complexities.

    What we have both realised is that it’s essential to have the time and space for ongoing conversations around our evolving understanding of our needs. Too often the default is to use prescriptive forms and processes to put adjustments in place, whereas we have both benefitted from ongoing dialogue with managers who are committed to ensuring the barriers we experience are removed, in as much as possible.

    Our hope is that more people will start to understand that a diagnosis or discovery, and the sharing of this new understanding, should form the start of a conversation, rather than an outcome to be compensated for.

    Neuronormative expectations

    The majority of people will be blissfully unaware of what we mean by neuronormative expectations because, if you’re neurotypical, it’s likely that you subscribe to the dominant social norms without much effort.

    Most people, for example, assume good eye contact means you’re paying attention, and arriving late, particularly persistently, indicates a lack of commitment and/or interest. If you’re autistic, lack of sustained eye contact can be used to aid concentration, especially when processing auditory information, and lateness can be down to a multitude of reasons from difficulty with transitions to the need to avoid the ‘chit chat’ that often precedes the start of something.

    It’s also worth noting that these norms are culturally located and direct eye contact, for example, is considered disrespectful or invasive in some countries. It’s a wonder to both of us then that such subjective meanings and interpretations have become normalised standards that we are somewhat required to adhere to, to be accepted.

    Indeed, research indicates that even subtle deviations from these arbitrary social norms can result in autistic adults being incorrectly perceived as being deceptive and lacking credibility and that neurotypical peers are less willing to interact with autistic people based on social assessments made in a split second.

    It is also worth noting that we may well be thinking about all of the above whilst trying to judge the correct level of eye contact to be making; this is just part of the complex backroom processing and calculations we do on a daily basis!

    With all of this in mind we’d encourage colleagues to think about assumptions around what it means, and looks like, to undertake certain activities that most assume shared understanding of.

    We can certainly identify a range of areas where our interpretations diverge, such as notions around communicating effectively, networking or being professional.

    A good example is the way in which we’ve co-written this piece, which has come about through an initial text based online interaction, followed by asynchronous collaboration. At the time of finalising this piece we have still never “met” online or in person but have engaged in a rich exchange of ideas that have allowed for meaningful collaboration.

    If colleagues could be open to alternative interpretations and manifestations of social norms, higher education would be the richer for it.

    Allyship is needed

    With these challenges in mind there are things that can be done to support late-diagnosed colleagues. Essentially these centre around allyship and actively working to acknowledge discrimination and unconscious bias.

    Consider how you respond when someone shares their autism discovery or diagnosis

    Can you approach the conversation with curiosity, accepting that the experience of being autistic might, in fact, be very different from your own? Central to this is recognising the limitations of your knowledge and experience.

    It is a natural response to want to normalise your experience with the person sharing their diagnosis with you, but that may not be the comfort you expect it to be, and might accidentally undermine the identity they are still coming to terms with.

    Rather than saying “I do that too”, or “aren’t we all a little bit like that though?”, create a space where the person sharing their diagnosis with you can take time to form their own words, and be sure to centre them in the words you use with them.

    What part do you have to play in removing barriers

    For us, everyone has a role to play in removing barriers that prevent us from thriving. Whether directly as a manager supporting autistic colleagues to navigate often overly complicated HR processes, or as a peer becoming aware that your colleagues need to do things in a different way.

    You don’t need to know someone’s diagnosis to be an ally, you can simply start by identifying if there are moments you default to your preferred ways of doing things while inadvertently overlooking a colleague’s genuine need to things differently. If you come across resistance that is inexplicable to you, withhold judgement and instead become curious about alternative ways of thinking and being.

    Reflect on what norms and expectations you assume

    Assumed shared understanding and narrow interpretations of behaviour is the space where most unconscious bias sits. The reality is that the imaginary social contract we have all supposedly signed is just that – a fiction that not all of us have been granted access to.

    Can you make space to co-create shared understanding around what it means to “communicate”, for example? Can you become aware of your bias that “good communication” manifests through narrowly defined behaviours? Or can good communication also be non-spoken, asynchronous or graciously feature enthusiastic interruption, or deep dive monologues?

    Ultimately, whether you are an individual in whom an autistic colleague quietly confides, a senior manager with the agency to affect positive change, a HR professional implementing processes, or someone involved in developing policy – everyone has a part to play in making higher education a place where autistic people can thrive.

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