Disability equity in FBS: enough is not enough!

A blog based on ‘The Experiences of Disabled and Neurodivergent Staff and Students at The Faculty of Brain Sciences’ Focus Group Report, by Manjula Patrick and Nick Anim

Within the broader context of Equity, Diversity, and Inclusion (EDI) at UCL’s Faculty of Brain Sciences (FBS), this is the first piece of research carried out to explore the question “What are the experiences of disabled staff and students?”

Against the backdrop of the recent Covid-19 pandemic and the associated disruption to the conventional campus experience, the research was conducted through a series of online focus group sessions that aimed to examine how disabilities, visible and non-visible, shape working and social experiences at the university, for both staff and students.

In total, five focus group sessions were conducted, two for staff, and three for students. The number of attendees involved were eight staff, and twelve students. For both staff and students, the research question was disaggregated into the following five sections: (1) Staff/students experience, (2) Equity (3) Belonging (4) Ableism and discrimination, and (5) Recommendations. The related sub-questions are presented in the appendices of the full report. 

Key Findings

Due to the nature of voluntary engagement of this research method, this report is presented as a representation of some, not all, experiences. That is to say, there may be additional issues not captured by the research. Given that participants presented a very broad spectrum of physical, mental and neurodivergent disabilities, we can say with a fairly high degree of confidence that the experiences shared, offer a significant starting point for the FBS to better understand and hence improve the environment for all disability groups.

Awareness raising and training

Whilst there was recognition and appreciation of some good individual efforts in the FBS, as well as praise for the disability and dyslexia service and Occupational Health services, most participants expressed being very or fairly concerned that there is insufficient awareness and training on many different aspects of disability and the necessary processes to foster an equitable and inclusive environment for disabled people both within the FBS and UCL in general.

“Each HR person should know in and out the Equality Act and what it entails. I am gobsmacked that UCL has not faced any litigation”.

“They had no clue how to deal with a disabled person, so all they could think was ‘access to work’”

The tyranny of protocol

Many negative experiences expressed by staff were also linked to issues of inflexibility in implementing top-down protocols ‘by the letter’. Such approaches cannot, by definition and application, accommodate the variety of individual needs. In that context, for most disabled staff participants, expressions of dissatisfaction were often about their line-manager’s strict adherence or interpretation of blanket Human Resources (HR) edicts and processes that failed to take into account the specific requirements of a particular category of disability, or indeed related concerns raised by the individual member of staff.

“My manager has tightened up doing anything outside the box. It is HR writing off my situation in terms of them asking me to do something. HR is also one of the main barriers.”

For most student participants, the ‘tyranny of protocol’ is apparent in experiences such as long-winded processes of trying to get support, for example, to do with extensions to deadlines, and being “referred from pillar to post” without any clear signposts. For students with AD(H)D, the relative lack of understanding of the condition within UCL mental health services in general, and more specifically the FBS support structures, adds yet another layer of complications. In most cases, similar to staff experiences, the support available was a broad approach that did not address the specific needs of the individual.

“You don’t need protocol knocking on your doorstep, saying the same thing every year or so, knowing that your condition is permanent. And that is now starting to happen again as we come out of the pandemic and lockdown.”

Signposting

In many cases, although lecturers and line managers were sympathetic to requests from disabled students and staff, they often did not know how to initiate or implement the necessary remedial procedures. Additionally, support infrastructures such as websites often fall short in providing adequate information; even basic information such as signposting to Occupational Health services. One notable effect of such shortcomings is to discourage people from talking about their situation and needs. Overall, many of the participants in the study thought issues of signposting are rather chaotic within the FBS.

Fear of overreaction and stigmatisation

The decision by any person to reveal or share information about their particular disability is often mediated by the environment within which they are located and operate. For some disabled members of staff, that decision is based on experiences either within society at large, or previous places of employment. In many cases, the constant fear of overreaction and stigmatisation prevent people from sharing information about their disability, even at the point of applying for particular academic courses or employment positions. Relatedly, many of the staff expressed a surprise that UCL does not appear to be a disability confident employer. As a result, people are choosing not to share information about their disability.

“I wouldn’t want UCL to know [about my disability] in any formal capacity. At the back of my mind, I still think what if you think less of me? What if some decision down the line, could influence negatively on me because they think maybe I can’t do certain things?”

 “Why am I disclosing something when no one is reaching out to me to see how they can help me?”

The fear of overreaction and stigmatisation for students with disabilities is felt across all levels, from undergraduate to doctoral studies. Many students with non-visible disabilities described experiences of fellow students and lecturers being ‘freaked out’ when they shared information about their disability, leading many to conclude that it is perhaps better not to tell others. Despite periodic events and campaigns, there remains a general lack of awareness and understanding, particularly about neurodivergent conditions such as AD(H)D.

Personal and career development
Across both academic and professional services staff, participants expressed a frustration at what they described as very limited chances of progression. Perhaps most disturbingly, some participants highlighted incidents of being used to access groups or communities related to their particular disability for research purposes, without thinking much about how to encourage or help the personal and career development of the staff themselves. Such experiences left many staff despondent and feeling they cannot progress at UCL.

“I don’t fit in because there’s a distinction between those who are disabled, and senior members of staff and I feel like long term I cannot stay there because I will never grow and I will never progress in that department.”

Questions of personal development for student participants in the study were more difficult to gauge due to the disruption of the Covid-19 pandemic and remote learning. Whilst some neurodivergent participants felt they benefitted greatly from the switch to online learning, others felt their personal development was stifled because many courses took on more students than normal, and therefore lecturers could not give sufficient attention to their specific needs. In that respect, many students have felt very challenged and overwhelmed by the lack of recognition and attention.

Solutions and recommendations
Both staff and student participants in the study were, in the first instance, very grateful for the opportunity to engage and share their experiences and opinions in this study. All participants expressed a wish for the study to just be the beginning of a process that will periodically invite them to share their experiences, not only online but where people could meet in person.

“You should not have to seek out your own support, it should be there for you. It should just be there, treating everybody equally in that sense without it feeling, well, it always feels a bit secretive to me.”

Beyond that, there were three main recommendations put forward by the participants, which we believe can be set in motion immediately.

First, the FBS should set up a framework for disability support; a substantive post at faculty level with disability leads/reasonable adjustment coordinators at department/institute level who work in partnership with the Disability Equity Lead to provide expert guidance to the FBS leadership, identify and lead key projects.

“I have been told that since I am a PhD student, reasonable adjustments cannot be forced on professors because it is between me and them whether they can give me it… Basically, it is a lottery whether they follow the reasonable adjustment or not. So, there is a bit of a question mark on how they [the faculty] prevent this from happening.”

Second, FBS and all its departments/institutes must go beyond the formal responsibilities, standard operating procedures, and inflexible protocols of accessibility and support, to provide all staff and students with clear guidelines. Obligatory annual training to improve disability literacy is needed to ensure a fair and inclusive environment throughout the Faculty. The training should be delivered in flexible learning formats by/with disabled people, and in association with a framework of accountability such as action planning at department/Faculty level, with proactive contributions to EDI assessed in annual appraisals for all staff and reported to the faculty.

“They were just completely freaked out by it [my impairment] … maybe it’s better to not tell people still. That is so hard because there’s been so many campaigns on normalising mental health and having mental health difficulties.”

Third, there should be a concerted and consistent effort within the FBS, to raise awareness and provide information about various disabilities, seen and unseen, from the social model perspective. In other words, an understanding of disability that steps away from the medical (deficit) model and viewing disability as homogenous. We must celebrate and give platform to the unique contributions of disabled people in our community. Relatedly, as put forward by the participants, the FBS “should adopt a broad approach that assumes everyone has a disability they are not sharing” so take anticipatory action, placing accessibility and inclusion at the core of all activities.

“It always feels like they are saying ‘these are the rules, and we are agreed that you [as a disabled person] are an exception’. But I do not want to be an exception, yet that is the way it is.”

“I think we have a long way to go, and I wish I had a community that would celebrate the differences I experience, but I don’t feel that at the moment”.

It is our hope this study provides some valuable insights into how disabled staff and students at the FBS understand and formulate their own experiences of the barriers that they encounter within the Faculty (and UCL in general) and that co-produced recommendations will be taken forward by the Faculty leadership.

Alan Thompson, Dean, Faculty of Brain Sciences responded to the report: “This report lays bare the challenging reality experienced by staff and students with disabilities in the Faculty. These findings are a much needed first step towards improving disability equity, and meaningful action needs to follow. As Dean, I will work with the Director of EDI and Vice-Dean EDI to consider the recommendations to strategically and systematically improve the way the Faculty and UCL operates, and dismantle the barriers impeding staff and students with disabilities. It is important we raise awareness of the issues staff and students are facing across UCL, educate those in key roles (e.g. line managers, personal tutors and programme directors) and put in place appropriate support for all members of our community; particularly the most marginalised. I am committed to working with colleagues within the Faculty and across UCL to make change happen.”

A warm thanks to all the staff and students who participated in this study for their generosity and openness in sharing sometimes painful experiences in the spirit of helping us work towards an equitable and kind community that values all and enables everyone to be the best they can. The credit for this work goes to them.

Project team:
Nick Anim (Project Researcher, The Bartlett).
Elise Crayton (Psychology and Language Sciences)
Jason Davies (UCL Arena)
Manjula Patrick (Principal Investigator and FBS Disability Equity Lead)
Nicola Ridgway (Ear Institute)

Note: Our full report can be found here.