Friday, 23 November 2018

Intersectional spaces of disabled people of colour in academia

Written by Karim Mitha

“Quite rightly”.

Two innocuous words that have embedded within them a summation, a decision, a judgement of finality, a presumption.

As I write this, on the heels of Mental Health Week at various educational institutions, I’m reflecting on the structures and cultures of workplace environments in terms of the accommodation of neurodiverse people and those with “hidden” disabilities. We live in a neurotypical world, where those who have different frameworks, experiences, patterns of thinking and ways of engaging are labelled as “deviant” or “problematic”. We’re told “it’s time to talk”- yet who is listening? We seek to normalise difference, by stating the importance of adjustments and accommodation; yet, it is often those who require these adjustments who are stonewalled or labelled as “problems”. Whilst there is substantial literature showcasing the underemployment of those with disabilities (Powell, 2018; Hendricks, 2010; Roux et al., 2013; Redman et al., 2009; NAS, 2016) it is particularly striking that this exclusionary environment is perpetuated within our institutions of higher education – where we ostensibly value the ability to challenge contemporary discourse, change assumptions, shatter barriers, and advance knowledge. However, evidence abounds that these same institutions replicate these exclusionary practices. For example, the work of Kalwant Bhopal (2015), Alexander and Arday (2015) and statistics from the ECE (2011) demonstrate that there are lower attainment and educational outcomes amongst BME individuals and poorer experiences of BME staff in UK higher education. Additionally, we increasingly hear stories of students and academics with disabilities fighting to get workplace adjustments, despite it being accorded to by law, due to the ignorance or otherwise of certain staff (Brown & Leigh, 2018).

The debate regarding hidden disabilities is highly problematized. Are diagnostic labels helpful? Do they risk “labelling” or pathologising non-culturally normative behaviours? Why do certain conditions appear to be patterned amongst certain demographic groups? Through KimberlĂ© Crenshaw’s (1989) work on intersectionality, we are now familiar with discussing intersectional spaces and the influence of multiple identities, positionalities, and subjectivities on an individual.

This can compound a negative experience on an individual who occupies multiple marginalised spaces and through efforts such as “mad pride” (Schrader, Jones, & Shattell, 2013) we can see that there are elements of label reclamation – in which disparaging and negative terms are reclaimed and incorporated as part of one’s identity. Alas, whilst there is movement “on-the-ground”, it pushes against a strong stonewall and intransigent culture in the ivory tower of academia. We’re told to disclose conditions to those more senior so that adjustments can be implemented, as per the Equalities Act and legislation that “reasonable adjustments” can be implemented. Imagine then, when disclosing a diagnosed condition, to be told “Now, did you know about this beforehand?” What is the implicit message being stated by this question – that supposedly if you had a diagnosis you should not be occupying that space? That you are not welcome? Or perhaps the unstated message that if you did know and had told us we would not have accepted you? As a personal tutor and research supervisor myself, I know that statements such as these are unacceptable, that my students come from different backgrounds, with different strengths, and whether they are abled or differently abled my job is to help them to reach their full potential and be supportive of whatever adjustments they require to perform to the best of their ability. Why then do we permit older (mostly white) academics to make comments such as the above with distinct able-ist undertones?

I love my work. I enjoy working in mental health research, engaging with vulnerable populations and communities, hearing personal insights and trying to make some addition to the evidence base through examining personal experience and encounters with distress. Nonetheless, I’ve also seen how this work can be politicised and how scholars with no training in social work, psychology, psychiatry and the like can feel they have the expertise to make judgements and pronouncements on matters outwith their area of expertise. When middle-class able-bodied (usually white, male) academics make pronouncements and decisions related to the BME experience it perpetuates the narrative and discourse of what is called “whiteness”, using the defence of “academic judgement”. Whilst this term appears to be the catch-all to justify questionable activity on the part of academics, it is concerning when this is used against those in more vulnerable and marginalised spaces. For example, issues of patient safeguarding in health research is not an “academic judgement”. Matters of research ethics, confidentiality, data protection, Caldicott principles, patient risk and benefits are not “academic judgements”. There are guidelines in human-based research, of working with clinical and vulnerable populations, of statutory frameworks and procedures which must be legally followed. It is not an “academic judgement” to ignore them, nor should the discourse be shifted to the disabled academic to be a “problem” for stating that these principles must be followed.

When considering the “social model of disability” we are now encouraged to employ an “asset-based” approach, of looking at how structural factors and adjustments can be made to work with the strengths of the individual, rather than a “deficit-based” approach, of looking at the student’s challenges. Instead, often times middle-aged, middle-class, able-bodied academics employ an “able-ist” mentality to try and portray a student’s/colleague’s disability as a “hindrance”. The notion of “academic judgement” applies to preserve and protect the egos, reputations, and culture of middle-class, able-bodied academes – this then serves to make matters of research methodology be construed as “academic judgement”. For example, it is seen to be okay for scholars with no subject-area background to negate methodologies in other disciplines due to “academic judgement” – so luck help you if, for example, you are a scientist trying to use a computer programming language to interpret old manuscripts and have a literary scholar claim the computer code is incorrect because it is an “academic judgement”. This is further compounded by the power dynamic from positionality and perceived authority which can occur when one considers issues of seniority and race.

Alas, whilst there may be a push towards “unconscious bias” training, which still is not mandatory, there is no requisite training for academics in working with students with diverse learning needs. There is no awareness as to why certain students may need things explained in a certain manner, or why some may need to take sick leave for disability reasons – instead, particularly in the humanities, there is a feeling that the academic knows all and can make judgements overruling clinical decisions, with the awkward experience of having to disclose in detail aspects of a particular condition to academics with no background or training in that condition who can then make pronouncements on what adjustments would be made, if any.

Along with the overt discrimination one can experience, there are the subtle, nuanced, approaches which can’t be quantified or measured directly. This is experienced through exclusionary practises, different standards and expectations, and often implicit academic politics – the not inviting someone on a grant, not co-authoring with the PhD student, not signposting to relevant career development/networks, not collaborating on pieces of work, not including one in conferences/workshop/symposia, etc. There is an irony when, for example, junior (often BME, often working class) academics are overruled in their subject area specialism by administrators or non-subject area experts with differences in approaches being framed as obstinate and difficulties due to the former’s disability, rather than the more reasonable recognition of it simply being outwith one’s speciality. It takes some degree of humility to know one isn’t an expert in all things yet institutional structures promote the concept of the “all-knowing” academic and power dynamics can result in those who can challenge remaining silent.

Part of being an academic is to develop skills in knowledge dissemination through conference attendances and academic publications. How is it then appropriate for able-bodied academics to tell a junior academic with a disability to “Prove you can write”? Should it not be, “how can I help/support you to produce this work?” “What would you need help with in this article/paper/etc”. Why is it okay to “victim-blame” or shift the onus on to the most marginalised? Moreover, how is it acceptable to tell a BME student that their religion/race/culture is a hindrance to their mental health – and then have a pithy apology “if the unfamiliar wording caused you anxiety”? That statement in and of itself is belittling of an individual with a hidden disability and makes judgements on capacity, resilience, and the real concerns of those who may have anxiety-based disorders.

For those who are new to academia, a quick learning curve is anticipated. Yet, for those with hidden disabilities, it is difficult to tease out the nuances, the social norms, and the intricacies of navigating a bureaucratic, idiosyncratic, exclusionary, able-ist environment. Networking and support are vital. For example, providing adjustments so that the individual can do the work and be supported to perform to his or her ability. Having support from the Disability Office or Occupational Health is essential in this matter. What is not okay is for academics to dismiss this by virtue of being an administrator and making a judgement that “quite rightly” support is not required in conducting work in which the administrator themselves have no prior expertise. To have questions asked of “how would this [adjustments] be funded” when actually it is not the student’s/ individual’s responsibility to fund required adjustments, particularly when subject-area experts have suggested multiple means of providing accommodation and adjustments. How interesting, then, it is that it is permitted for academics without the requisite subject-area knowledge to overrule input from subject area experts (often women) (often BME) and that of recommendations from those more clinically qualified. It would be unfathomable for an electrical engineer to advise a literary scholar on aspects of cultural and literary theory– yet it is seen to be okay for area studies academics to dictate empirical research methods and protocols outwith their methodological purview simply because they claim expertise in the area studies of that population. Thus, this is an area where “academic judgement” can be seen to override legal obligations under the Equalities Act.

I feel a sense of irony, that as an academic working/lecturing in mental health research, to have assessments made by those who are unqualified to do so on one’s capacity, research, capability, and research potential. Still, power dynamics abound where able-ism, classism, and racism overpower the voice of the marginalised.

In contemporary discourse, there is concern about the voices of the marginalised, the under-employed, those with differing equal opportunities characteristics. As an academic teaching on disabilities, I ask my students if the very spaces in which they are studying in are inclusive and accommodative for those with differing abilities and learning needs. Yet, whilst students readily take on board issues of diversity and inclusion, this same engagement is not felt at a managerial or administrative level where, despite legal obligations to Equalities, administrators can often act as autonomous agents hiding behind the framework of “academic judgement” to justify questionable actions and approaches.

I write this because as a medical school lecturer I teach the future generation of care providers. I am able to impart to them issues of equalities in their clinical practice and everyday environments, discuss aspects of stigma and discrimination, and outline concepts of intersectional spaces and microaggressions. I am quite humbled that the medical school in which I teach is supportive of this work and in promoting equality and diversity. However, it is a shame that oftentimes humanities departments, which seek to examine the human condition and experience, have yet to take this on board and instead promote hostile environments to neurodiverse peoples and are woefully under-represented by those who actually occupy marginalised spaces and backgrounds. I am in a position where I support students through difficult times and experiences, and work with them to get them to demonstrate their potential – yet this concomitant support is lacking from those more senior. When I hear of a mental health crisis amongst students I wonder if we are becoming so caught up in neo-liberal academia, of focusing on metrics, completions, graduations, retentions that we forget that in an era of equal opportunities not everyone comes from a cookie-cutter mould of middle class, white, privileged, able-bodied. Equalities and recognition on diversity is not a tick box exercise but necessitates a culture change where this is embedded into curricula and departmental culture and the behaviour of its staff. Unconscious bias training should be mandatory and people should not be belittled due to protected characteristics. Abuse is not a right of passage.

Quite rightly.

The summation, decision, judgement, and assumption regarding the support required by neurodiverse people; if departments permit these judgements being made, and reframing struggle as a student’s performative concern rather than due to a negative structural environment, they are complicit in creating exclusionary spaces and environments.

My writing this blog post is both cathartic and also an awareness that if departments and academics can bully and belittle junior scholars simply because matters are outwith their subject area expertise and then blame a student for falling ill, deny leave, and frame any struggle, which is normally part and parcel of the research process, as incapacity and incapability rather than the structural issues of supportive learning environments, then it shows that perhaps there is an uphill struggle for neurodiverse people to fit in exclusionary neurotypical spaces. I write this to show that this culture must change, that neurodiverse people have strengths, and that “quite rightly” I can “prove” I can write.

References:

Alexander, C., & Arday, J. (eds) (2015). Aiming higher: Race, inequality, and diversity in the academy. Runnymede Trust: London.

Bhopal, K. (2015). The experiences of black and minority ethnic academics: A comparative study of the unequal academy. Routledge: London.

Brown, N., & Leigh, J. (2018). Ableism in academia: where are the disabled and ill academics?. Disability & Society, 33(6): 985-989.

Crenshaw, KimberlĂ© (1989). "Demarginalizing the intersection of race and sex: a Black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics". University of Chicago Legal Forum: 139–168.

Equalities Challenge Unit (2011). The experiences of black and minority ethnic staff in higher education in England. Equalities Challenge Unit: London.

Hendricks, D. (2010). Employment and adults with autism spectrum disorders: Challenges and strategies for success. Journal of Vocational Rehabilitation, 32(2), 125-134.

National Autistic Society (2016b). The autism employment gap: Too much information in the workplace. Retrieved from: https://www.autism.org.uk/get-involved/tmi.aspx

Powell, A (16 August, 2018). People with disabilities in employment. House of Commons Briefing Paper, 7540.

Redman, S, Downie. M, Rennison, R and Batten, A (2009), Don't Write Me Off: Make the System Fair for People with Autism. The National Autistic Society: London.

Roux, A. M., Shattuck, P. T., Cooper, B. P., Anderson, K. A., Wagner, M., & Narendorf, S. C. (2013). Postsecondary employment experiences among young adults with an autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 52(9), 931-939.

Schrader, S., Jones, N., & Shattell, M. (2013). Mad pride: Reflections on sociopolitical identity and mental diversity in the context of culturally competent psychiatric care. Issues in Mental Health Nursing, 34(1), 62-64.

About the Author

Karim Mitha teaches at the Edinburgh Medical School and supervises students on the MPH. With his interdisciplinary background in public health, psychology, and Islamic Studies he focuses on stigma and discrimination, cross cultural mental health, public health, health inequalities, identity and acculturation. Prior to Edinburgh, he was a lecturer in Public Health and Psychology at De Montfort University. He is a Fellow of the Royal Society of Arts, Royal Society of Public Health and is a member of the British Sociological Association and the British Psychological Society. He is also trained in mental health first aid and in counselling skills.

Saturday, 10 November 2018

Designing a Disabled and Ill Researchers’ Network

Written by Kay Guccione (Researcher Mentoring Consultant) and founder members of the University of Sheffield Disabled & Ill Researchers’ Network: Chris Donaldson (PGR in the Medical School), Peter Dory (PGR in English), and Isobel Williams (post-doc in Psychology).
Image of the Disabled & Ill
Researchers' Network logo which
is a blue square with the name
of the network and a plus sign on
a black circular background.

Nobody embarks on a PhD thinking it’s going to be easy, but disability and illness can make researching a thesis that little bit more daunting, exhausting or isolating. The Disabled & Ill Researchers’ Network is a group for postgraduate and postdoctoral researchers who are managing PhD study alongside a disability, impairment, injury, or physical, psychological, and/or mental health condition.

"The biggest issue I face in my research is fatigue management. It's never easy to judge what might send me into a long, unproductive slump. I'm lucky enough to have understanding supervisors, but there's always the worry that I might slip too far behind."

The Network launched at the University of Sheffield in March 2018. It’s one of three new peer-networks for researchers at Sheffield (see also: the Emotionally Demanding Research Network and the Parent PGR Network). These new researcher communities are a part of our Researcher Wellbeing strategy, combining lots of initiatives that work across different researcher groups.

At Sheffield we use a 'Google Community' website but you could make use of any online space that works for you. A Facebook group, a Wordpress site, an email mailing list, a Slack channel or any other intranet or messaging system you prefer. Through our online space, and face to face events, the group aims to provide a forum to discuss problems, share strategies, and campaign for greater awareness of researcher disability and illness and its impact on study.

“I had perhaps naively expected all members of staff at a university to be ‘disability aware’ – particularly those who work in patient-facing departments and therefore work with disability and illness for a living. That was not the case, and I came across some ignorant-bordering-on-discriminatory attitudes. I was, however, lucky to have understanding supervisors and PGR leads who allowed me to work in the way that was right for me, and fought my corner when necessary.”

In our first meeting we started with an open forum to surface some of the big discussions, we compared experiences, how they matched with the expectations for study, and the university processes and systems that support this, or make life more difficult.

Hot topics ranged from the very cultural, to the very practical:
  • Patchy awareness in departments of the needs of disabled and ill researchers to manage their own time and energy — this can lead to overstepped boundaries. e.g. treating disabled researchers as if they are ‘lazy’ if they decline opportunities or say no to them, or using power relationships to force participation, or insist on longer working hours.
  • Awareness of how physical health can impact on mental health. If a disclosed disability is ‘physical’ then a PhD researcher may find themselves are excluded from support for mental health.
  • Low awareness of key contacts who can support Disabled & Ill Researchers’: e.g. Departmental Disability Liaison Officers.
  • Application for support and communication processes can vary between different services, academic departments, health services, and key contacts meaning that they can take a long time and errors can be made, or information lost.
  • The number of Accessible workspaces on campus is not adequate or well mapped.
  • Taking a Leave of Absence (suspending PhD study for a period of time) — which is particularly pertinent to ill and disabled researchers:
    • Financial exclusion from taking a Leave of Absence due to it being an unfunded period of leave.
    • How to best organise and manage a phased return from a Leave of Absence
    • Supervisor(s) awareness of Leave of Absence processes, and their permission or encouragement to use the process.
    • The ‘current climate’ of research (deadlines, submission times, pressure) and the difficulty of taking time out.
    • A Leave of Absence isn’t a ‘cure’ and we shouldn’t expect that researchers will return ‘fixed’ and without ongoing issues to manage.

"I think my biggest issue has been adapting the skills I've learnt to a research environment - particularly for students with disabilities and SpLDs, I don't think your degree prepares you for how to manage your time, how to balance your different responsibilities. I've also struggled with a great deal of people not understanding how my disabilities/SpLDs affect my learning and how I carry out my PhD. Finally, when I've needed time away, I don't feel as if I've been able to take it - I simply wouldn't be able to afford to live, as you lose funding for time you take on leave of absence."

To make sure that the fledgling network would grow and have strategic impact, the group decided that our immediate priorities were to develop:

  • An online space where we can all share information, resources, ask questions and support each other;
  • Partnerships to influence strategic processes and policies related to research staff and students and ensure representation;
  • A series of blogs sharing the stories and experiences of disabled and ill researchers (here’s the link to the growing series) that can be put to good use at researcher inductions and pre-recruitment;
  • A guide for PhD study with a Disability or Illness, my excellent colleague Chris Donaldson has joined me to co-author this study guide;
  • A campaign related to academic and professional services staff disability awareness training;
  • A disability/illness disclosure pledge campaign — encouraging postgraduate researchers to disclose disabilities and illnesses and have open conversations with their supervisors about the best way to manage their health and study.

"Ideally, I'd like to see the initial disclosure be the beginning and end of all bureaucracy surrounding disability and illness for PGR students (well, all students really) - no having to worry about justifying extra provisions or leaves of absence, piling stress onto an already stressful undertaking.”

“The big change I want to see implemented is paid sick leave for PGRs from all funders. It's not always possible to financially support yourself when you're unwell, especially if you're a student from a lower socioeconomic background.”

“The fact that I feel ‘lucky’ to have the support I did, says something about the current state of disability awareness in higher education. Everyone should have the support I did. I think we can get closer to that by training staff around how they should be supporting disabled students. We should also be fostering a culture where students feel they can have open conversations around disability and reasonable adjustments, trusting that the outcomes of those conversations will be routinely actioned by the university.”

We believe that networks, led by researchers, and that respond to the real needs of researchers are the most important way to support self-management, peer-learning and healthy relationships with work and study. These networks must have resources though if they are to create change and build user-centred processes, including support staff time, and senior staff champions who will listen and amplify their voice.

About the Author

This image is a portrait photo
of Kay Guccione with
various framed artworks
in the background.
Dr Kay Guccione is a Researcher Developer, with specific interests in the role of mentoring and supervision relationships in enabling doctoral learning. She has recently published two funded pieces of research into Trust Building in the research environment, an empirical study looking at the Value of the Doctorate, and books on Enhancing Researcher Development, and on Thesis Writing. This year she was awarded a National Teaching Fellowship for leadership in doctoral and researcher education.