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 Kimberlé 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, Kimberlé (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.

Coping strategies for disabled academics: self-acceptance and collective solidarity

Written by Marion 

Being a disabled academic is not easy. We frequently require considerably more time and effort to achieve the same as other academics and find some things which seem to be trivial for non-disabled colleagues almost impossible. We may need to achieve a lot more than others for the same recognition. We also frequently come up against a lack of understanding or even hostility when we ask for adjustments to overcome the barriers we face. It is very easy to become dispirited and to think all the difficulties are your fault and feel inadequate and incapable.

The first strategy is to recognise that you are not to blame and that academia is not particularly friendly and sometimes outright rejecting of disabled people. The social model of disability, though by no means perfect, is useful here. It puts the problem and responsibility firmly on society with its infrastructural, social and attitudinal barriers and not the individual and their impairments. It is the lack of large print books, ramps and lifts not the fact you are partially sighted or use a wheelchair that are the problem.

The second strategy is achieving change both for yourself as an individual and more widely for other disabled academics through collective action with other disabled and non-disabled people. There is strength in numbers and working with others reduces the risk of victimisation. This should include joining a trade union. UCU (the University and College Union) in the UK, which also admits (postgraduate) students. Other useful organisations (in the UK) include Disabled People Against the Cuts which is campaigning, for instance, to remove the various hurdles to disabled people getting the benefits they should be entitled to.

In most countries there is legislation about adjustments for disabled people. In the UK there is relatively strong legislation, but no sanctions for not implementing it. While the right to adjustments in the UK is limited by considerations of their ‘reasonableness’, in practice most universities and research institutes are large enough and have enough resources for this not to be an issue. It is useful to encourage your trade union branch to negotiate a policy on reasonable adjustments with your employer. This should include reasonable time limits so that adjustments are put in place quickly and central responsibility for payment to prevent individual departments or schools objecting on the grounds of cost. It should also include disability leave, for instance for medical and other appointments related to your disability, getting a guide dog, learning to use new technology or time off due to changes in your condition. For many disabled academics excessive workloads are a particular barrier and working the nominal 35-38 hour week rather than the 50-90 hour week frequently expected could make a real difference.

If you require reasonable adjustments, you should involve your trade union in negotiating them, and therefore need to be a member. Despite their legal obligations, academic employers are not always helpful and trade union support can help to change this. It is also useful to know about financial support. In the UK Access to Work has been called the best kept secret. It covers, for instance, support workers, additional equipment, adaptations to equipment, fares to work if you cannot use public transport and disability awareness training for colleagues, though the employer might be required to pay a contribution.

The third strategy is talking and exchanging experiences with other disabled academics by electronic media as well as face to face. This can be very helpful in finding out what adjustments, if any, they have and which ones they have found useful, as well as any good practice in their institutions and campaigning strategies that have and have not worked. This can help you determine what additional adjustments might be useful to you, as well as what to campaign for in your institution and how to go about it. Drawing attention to any good practice at competing institutions can often be useful. Talking to other disabled academics can be very important in breaking down isolation and feelings of inadequacy and blame and helping you realise that any problems you are experiencing have structural not personal causes. Talking in confidence to people who understand what you are going through can help you survive when things go wrong.

A fourth coping strategy is recognising your strengths. We all have them, as well of course as weaknesses. The creativity and adaptations we have developed to overcome the barriers we face are in themselves strengths and some of us may have particularly creative ways of thinking and working and/or find easy things which most non-disabled people struggle with. However, when things become difficult it is easy to forget your strengths and creativity and all the positive qualities that enabled you to overcome all the barriers, hoops and hurdles to be accepted into academia. It is easy to fall into a deep hole and feel totally inadequate. It can even be useful to write down your strengths and your achievements at a time when things are going reasonably well, so that you can refer to them in the more difficult times.

The final strategy is keeping a sense of humour, being nice to yourself and not expecting the impossible, or at least not all the time. It is frustrating to have to accept that there are things you need help with or struggle with, particularly when non-disabled people seem to sail through. At these times it is useful to consider your strengths and the times you have helped other people, as well as recognising that the difficulties are due to barriers to disabled people not your inadequacy. Keeping your ability to laugh at things, including difficulties and the pomposity or obnoxiousness of colleagues can be helpful. And the last laugh will be on us, by staying in there and being successful academics despite all the difficulties.

Why I'm unhappy with "Imposter Syndrome"

Written by The Questioning Aspie 

The author has kindly given us permission to re-post this article from her own website.  The original can be found here:

https://thequestioningaspie.wordpress.com/2016/08/17/why-im-unhappy-with-imposter-syndrome/

So, I may have mentioned that this blog is likely to be a pile of contradictions – and that I might end up changing my mind, or refining ideas about things as I go along.

Well, this is one of those times …

I wrote a blog recently about how I feel that my autism diagnosis makes having confidence in my ability to do my PhD really hard (it’s here if you’d like to take a look). In the post, I mentioned how frequently the term “Imposter Syndrome” was used to describe how often people don’t feel like they ‘fit in’ in academia – that they don’t feel good enough. I tried to explain how having an autism diagnosis, with all that this involves, makes this even more tricky.

Well, my blog was picked up and retweeted by Susan Oman, who is researching wellbeing, including in relation to PhD experiences (you can check out her work here). What was particularly interesting was that in retweeting the blog link, the phrase that Susan picked up on was “I feel like an imposter, but not just that, I feel like an autistic imposter.”

And this is really how it felt to me when I wrote it – like all PhD students experience ‘imposter syndrome’ but being autistic makes this even more of a problem.

So why am I questioning this now?

Well, since I wrote the blog, I’ve been thinking about, and speaking to others about how the notion of ‘imposter syndrome’ actually works, and it occurs to me that the phrase, and what it implies, might not be helping.

What I mean by this is that I had been thinking of ‘imposter syndrome’ as something that affects individual PhD students – and that my individual experience of autism meant that my version of ‘imposter syndrome’ was different/worse/whatever than that of others. Well, the thing is that I do still think this might be the case to an extent – and I don’t think that those who aren’t autistic can understand what it’s like, or can know about it. I do still feel that, but in the past that’s made me quite protective of it, and quite “parochial” (I guess) about the specialness of autism and of autistic experiences.

I didn’t want it to be lumped together with other types of individual experience because how could others possibly know about autism? (Which was my individual experience, and the overriding cause of my ‘imposter syndrome’). So it shut off my thinking about other types of individual experience – people who experience ‘imposter syndrome’ because they are trying to do PhDs and balance childcare commitments, because they have come to academia via a ‘non traditional route’, because they are older than the ‘typical postgraduate’ – or all the other hundreds of thousands of ways that people can feel that they don’t fit in with the model of what a ‘proper PhD student’ should be.

It set me apart from them because the term locates ‘imposter syndrome’ in the individual. It sets it up as an individual ‘problem’ for the individual to overcome.

But I’m not happy with that. Because locating the issue within the individual makes it into a ‘personal’ struggle and creates some kind of hierarchy (“my experience is worse than yours because I have autism” or “your experience is worse than mine because you’re from a Working Class background”). It also has the potential to locate the cause of the trouble in individuals – individual supervisors, individual departments. And this in itself is something that makes raising these issues very problematic for those of us who actually have good relationships with supervisors or with our departments. Indeed, this concern makes it feel troubling for me writing this now, because it feels like it would be so easy to infer from my attempts to absolve myself of any individual ‘blame’ for feeling like an ‘imposter’, that I am attempting to lay the’ blame’ on other individuals. But it’s absolutely not that. I have a really great supervisor and I like the department I’m in. The issue is a far deeper cultural one than that, and I think it goes beyond individuals and is historically and culturally rooted.

So I think that this individualisation of ‘imposter syndrome’ lets the wider systems and structures that lead people to feel that they don’t have a place within academia ‘off the hook’. And really, seriously, if this phenomenon is so widespread, across so many different types of student, different institutions, different academic disciplines – then maybe, just maybe the problem is not an individual ‘syndrome’ but a structural issue. Maybe the focus for change needs to be on the concepts and practices, the systems that are creating the conditions for people to feel like outsiders in a place where they have earned the right to be.

And I don’t feel that talking about ‘imposter syndrome’ really gets us to a place where that is our focus for change.

I don’t pretend to have definitive answers for change, but I do want to be part of something that makes change happen – that makes academia a more inclusive place to be, so that those of us who are ‘non mainstream’ can make meaningful, recognised contributions in a way that does not push us to the brink of breaking, or beyond.

My reasons for this are clear and unashamedly partisan – as an autistic woman, I feel that I need academia. I need to be able to go beyond my own personal experiences and understand how the world works around me. I need to learn, and I love to teach. I also feel that I have something to contribute. I’ve worked really hard to get where I am, and so many people have helped me along the way. But being part of a community means you have a responsibility to it, and to help to shape it, and that’s what I’m trying to do from my autistic perspective.

So the one thing that I feel like I can offer at this point is the suggestion that maybe we should reconsider the language of ‘imposter syndrome’ and begin to talk about something that locates the problem outside of individuals so that we can begin to work within and change a system that actually makes the majority of us feel like ‘imposters’ at some point. Maybe we need to shift our focus much more firmly to ‘hostile spaces’ or ‘hostile cultures’ in the PhD experience and in academia more widely (of which the PhD is a formative part). Because that’s where I think change needs to happen.

 About the Author

The author is an autistic woman, studying and working in academia.  She has lived and worked in spaces where the pursuit of equality and social justice are presented as ‘given’ priorities – in some university environments, in work and at the kitchen tables of family and friends.  She cares personally, deeply and passionately about equality for autistic people. Personal experience of hurt, stigma and troubled identity have led her to try with all of the resources at her disposal to construct a life that works to shield other autistic people from those experiences.