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.

What neurodiverse, chronically ill and disabled academics do to manage life in academia

Written by Nicole Brown 

Being chronically ill, neurodiverse, and/or disabled means that adjustments have to be made in life. Quite naturally, the symptoms of illnesses, neurodiversities, and disabilities also affect one’s working life. This is, of course, equally true for academics, although they are often seen to be privileged. The digital health community and advocacy web site The Mighty has recently published a contribution on impolite behavioural strategies that those with chronic illness engage in to protect their health as much as possible.

Many of the behaviour patterns mentioned can be transferred directly or in some modified, translated form to serve as coping strategies for academics. This is exactly what I am doing in the following. Drawing on the original list from The Mighty and on conversations with disabled, ill, and neurodiverse academics, I provide a non-exhaustive list of coping behaviours in academia.

1. Saying "no"
Institutional citizenship requires academics to take on extra roles and responsibilities such as attending events, getting involved in planning and marking, and representing departments; the tasks are unlimited. Saying “no” is not an easy decision, but in order to protect body and mind “no” becomes an important word and therefore needs to be accepted and respected. Saying “no” does not make academics traitors to their institutions; it actually means the opposite: the academics are loyal to their students and workplace and are trying to make sure they are able to keep up with existing workloads and do not risk burnout.


2. Rescheduling


Many academics with disabilities, illnesses, or neurodiversities are overwhelmed with the tasks on hand, but they are still very keen to be fully involved in institutional life and decisions. They may just need some extra time or space for that. Rescheduling meetings and conversations is therefore particularly important, for the academics themselves but also for those involved in the decision-making meetings. After all, it is not in the interest of anyone to finalise decisions or documents under the influence of sensory overload, pain, fatigue, exhaustion, or any other symptoms. The flexibility of rescheduling means that the work the academics are contributing will be of a higher standard and the best possible quality. And sometimes, it may just be enough to allow for remote participation via email or video-calling facilities.


3. Secluding oneself


Many people with chronic illnesses, disabilities, and neurodiversities need their own space and time for themselves to which they can withdraw. For some, this may mean physically removing themselves into a quiet room where stimulants are limited. For others, this may mean resting or even taking a nap. For others still, it may just mean that they do not wish to network or engage in conversations. In a working context like academia, where networking and representation at events are everything, this is obviously very difficult to achieve. Therefore, the onus must be on all of us to create an environment where withdrawing from demanding situations is not seen as rude, but as a different way of working.


4. Being assertive about needs


This is in line with the previous points. All of us know for ourselves what makes us comfortable and productive and effective. So, therefore, any kind of workplace adjustment needs to be encouraged. This may mean offering a private office rather than an open-plan office – not because those with illnesses, disabilities and neurodiversities want to be treated differently, but because stimulants like noises, smells, lights or the flow of air (air-conditioning, heating, windows) cannot be suitably adjusted for each individual’s needs. Similarly, sunglasses, socks, blankets, pillows, backrests, and footstools are all items that can easily be provided. The message here needs to be that none of these items (or, indeed, any other support gadgets) should be ridiculed or envied. They are means to ensure productivity. Equally, being assertive about one’s needs includes strategies like staying away from work to avoid sick people during flu-season, asking not to be interrupted in order to maintain one’s stream of thoughts, not standing to greet someone, bringing one’s own food and drinks, and so on.


5. Leaving


Finally, and as important as the previous points, academics may need to leave. This may be leaving early to seclude themselves or to attend a doctor’s appointment, or this may be sick-leave. Many academics with chronic conditions feel under pressure to perform and produce so that they are pushing through acute flare-ups instead of allowing themselves a day or two to heal. In this sense, working models for flexible hours are probably the most feasible, sensible, and effective strategy for both academics and their employers.

For many, this list will include things they do to pace themselves and manage their needs. But for many other academics, this is a list of things they would like to do but feel they cannot. Academia is seen as an environment where there is no space for weakness, vulnerability, or anything less than being fully productive.

I am hoping that with the top-5 items highlighted, it may be possible to raise awareness of and increase empathy for the experiences of academics with illnesses, neurodiversities, and disabilities. Naturally, experiences of illnesses, neurodiversities, and disabilities need to be seen individually, but there are common traits affecting all non-neuro-typicals. And understanding and tolerance are what is needed most, after all.

Recent publications

Brown, N. & Leigh, J. S. (2018). Ableism in academia: Where are the disabled and ill academics? Disability and Society. DOI: 10.1080/09687599.2018.1455627

Brown, N. (2018). Exploring the lived experience of fibromyalgia using creative data collection methods. Cogent Social Sciences. DOI:10.1080/23311886.2018.1447759

Brown, N. (2018). Video-conference interviews: Ethical and methodological concerns in the context of health research. SAGE Research Methods Cases. DOI: 10.4135/9781526441812

Brown, N., Jafferani, A. & Pattharwala, V. (2018). Partnership in teacher education: developing creative methods to deepen students’ reflections. Journal of Educational Innovation, Partnership and Change, 4(1). DOI: 10.21100/jeipc.v4i1.747

Brown, N., & Janssen, R. (2017). Preventing plagiarism and fostering academic integrity: a practical approach. Journal of Perspectives in Applied Academic Practice, 5(3), 102-109. DOI: 10.14297/jpaap.v5i3.245

About the Author

Headshot of Nicole 
Brown in front of 
a plain background

Nicole Brown is a Lecturer in Education at UCL Institute of Education, and a doctoral researcher at the University of Kent. Her research interests relate to ableism, identity and body work, physical and material representations and metaphors, the generation of knowledge, and advancing learning and teaching within higher education. Contact details: nicole.brown@ucl.ac.uk Web site: www.nicole-brown.co.uk Twitter: @ncjbrown @FibroIdentity @AbleismAcademia

‘Not What I Paid For’: Ableism, Evaluations and the Academic Life

Written by Aparna Nair 

It was that time of year again.

The semester drew to an end and the university sent us enthusiastic email reminders to get students to evaluate our courses. ‘Evaluate NOW’, screamed the emails and signs posted all over campus. This semester, I caught myself instantly deleting that first notification as well as the later more urgent reminders. It was a futile gesture, since I nonetheless made sure to get my classes to fill in the evaluations. But for the first time in my academic career, I was genuinely anxious about the impending possibility of reading an evaluation report. Admittedly, 2017 was uniquely rough. A stressful year teaching seven courses was complicated by personal losses and the low hum of rising anti-immigrant sentiment, making it one of the most difficult of my life. I spent most of the year in a haze of auras, as my epilepsy had become rather recalcitrant.

And then I got these comments in my student evaluations:

I know she is sick. I know that she needs to sometimes bring her support dog into the class. I get it. But she missed classes. I know her TA took over, and that she caught up when she returned. But that is not what I paid for.

I expect more.

I don't want to hear about her illness. She gets paid to do this. WE are paying her to do this. She just needs to stop talking about it.

Even as I type the words, the shame rolls over me.

Evaluations like these raise the question of how academics who openly lay claim to disabled or chronically ill identities should respond when students demonstrate open, almost casual - certainly deliberate - ableism in evaluations. There is nothing in the faculty handbooks, endless trainings and workshops about being confronted with such blatant ableism.

I have lived with epilepsy for a very long time--I was diagnosed at the age of 11. In the deeply traditional and conservative South Asian cultures where I grew up, difference was neither encouraged nor tolerated and conformity was consistently rewarded. As a result of my illness, I experienced isolation, marginalization, derision, stigma and violence. After nearly two decades of concealment, I made a conscious decision to stop pretending that epilepsy was not a serious part of my life. Why, I thought, should I deny something that impinged on my every waking hour in ways that people rarely comprehended? Why did I need to pretend I was ‘normal’ (which my family had desperately wanted me to be) when I knew how illness marked me as different?

So, I ticked off the ‘Yes, I have a disability’ box when I applied for the position I have now, nervous and uncertain as to whether it made me just too marginal for a deeply conservative public university. I lay open claim to an epileptic identity as being part of the reason for my research agenda on disability studies and disability histories in South Asia. I design and conduct workshops on disability in university settings with a wonderful collaborator, and discuss what it means to be a chronically ill faculty member and how to ensure that our classrooms are accommodating and welcoming to disabled and chronically ill students. I publish autoethnographies on epilepsy in South India.

And every semester, my hands still shake when I tell students that I am epileptic in that first introductory session of every course. I strive for a matter-of-fact tone, and tell the classes that while this is not something I would usually share, there may be some times in the semester that my illness becomes uncontrollable and I might need to cancel a class. I then reassure them that this is factored into their syllabus and semester planning and that they will not lose out in terms of learning. Interestingly enough, my disclosure has consistently impelled students to share their own chronic illnesses or disabilities with me in private and I am very grateful for this, since it means I can make accommodations for them and design the class around their needs as well. But I have also come to realise that my initial fears about this act of public disclosure were not unwarranted.

For most of my teaching life, evaluations have always been the space where students expressed themselves anonymously and openly about their professors, without fear of reprisals. Evaluations can be funny and frivolous; trite and tough. Most of us who teach have been embarrassed at some point or the other by what seems to us sometimes unfair, occasionally inapposite ‘bon mots’—from comments on our sartorial choices (‘I loved his t-shirts’ to ‘He wore the same shoes all semester long’) to condemnations of our general affects (‘She is very opinionated! And expects you to agree with her’) to the student’s pondering what on earth we were doing in our chosen professions (‘I don’t know why he is teaching, clearly he is happier in the lab’). But evaluations can also be serious and help us adapt our teaching styles, our evaluation methods, our reading assignments and other pedagogical choices. I learnt that students liked blogging, but that they did not think that they had enough time to work on their exercises in class. I learnt that students will always have mixed opinions about group work, but that it is nonetheless useful. I learnt how the complicated courses I taught on race and empire and disability were received emotively and intellectually, and those responses were profoundly important in developing my courses in certain directions. So I had accustomed myself to opening my evaluations with the certainty that I would find useful information on my course design and assessments along with the more frivolous comments.

But I am at a loss as to how to respond to the casual ableism in my student evaluations, ableism which will become a part of every job application, every promotion and tenure application. It will be misinterpreted and decontextualised by committees and administrations and will eat into my teaching accomplishments or my research portfolio. For many people who see these comments, my epilepsy will circumscribe my abilities and skills.

How then do we respond to ableism in evaluations? I must admit, I am left only with questions. One option is to mention nothing of epilepsy at all in my classes. But it feels dishonest and just wrong.

So I can tell you how I have learnt to cope. I try to focus on the students with whom I seem to be connecting, the ones whose work is wonderful, who challenge me in class and whose presence in my classes is a true joy. And there are many of them. I have begun conducting my own evaluations in class, asking students what worked and what did not—and these are often more detailed feedback for adapting my pedagogical approach in different classes.

My methods do not always work. I sometimes feel like Sisyphus, and wonder if there is any point. I wonder if the affective (and physical) toll of being ‘out of the closet’ in academia is worth it at all.

And, in the meantime, it is more than a month since my evaluation reports were published. I still have not clicked on the link that takes me to the report.

Maybe next month? Or maybe not.

About the Author

Aparna Nair currently works as Assistant Professor in History of Science at the University of Oklahoma-Norman. She teaches on disability, race, empire, medicine and public health and her research explores colonialism and disability in British India as well as the meanings of chronic illness in modern south India. She blogs at disabilitystories.com.

Access denied: the dark side of prestige

Written by Hannah Gibson 

‘In order for others to [be accommodated], who as beings have a different set of requirements, they would have to push for a modification of the environment. Some have to push to be accommodated. Given how able-bodied privilege comes to structure a world (both a physical and social world) then people will disabilities have to push to have their own requirements met.’ (Sara Ahmed)

Spaces. Each one requires a different physical and intellectual attentiveness. Perhaps you have never thought about how much energy it will take to get from one space to another, how your body responds when faced with slight inclines or uneven paths. The lighting of a space, whether there is a clear trajectory from the doorway to a seat. The space itself, how it seems inoffensive yet from the outside looking in, certain spaces are porous, where the walls, floor, ceiling have come to assume a certain type of body will fill that space.

Some weeks ago, there was a public engagement session that I wanted to attend in the Department of Sociology at The University of Cambridge. Around the same week, I was looking forward to a lecture on intersectionality by Sara Ahmed. Both events were scheduled to take place in the same seminar room, but I could not go because on those days, it was too difficult to walk up or down stairs. I live with complex and rare multi-system invisible illnesses, and the challenges I face, particularly within society and academia are what disable me (thus, I identify myself as a disabled person). Living with invisible conditions means that I look physically capable and ‘healthy.’ In this blog post, I want to create (or contribute to) a dialogue about the salient and ignored issues related to being disabled (both visibly and invisibly) within an academic institution, access (or lack of) to spaces, and what messages this reproduces.

I feel honoured to be a Visiting Scholar at Reprosoc* in the Sociology Department at The University of Cambridge. My family are proud. It is a privilege. Speaking out in any way that isn’t positive about a prestigious institution feels wrong – I should be thankful, right? A girl who didn’t attend high school and fought her way through her undergraduate and graduate school now sits at a desk at one of the world’s most renowned universities, and I am raising questions that may make people uncomfortable. But, as Sara Ahmed would say, you have to push against the tide and push against others walking in the opposite direction to be accommodated. As for the notion of privilege and prestige, they work to silence me, trying to erase my discomfort before I begin to give shape to the words and dare to speak them. However my positionality as a temporary visitor is perhaps what gives me the confidence to be honest. My goal is simple: to raise awareness so that long-term, disabled students, staff, and other visiting scholars have access to access any room or area that able-bodied people have.

Although there are archaic and small elevators (note the word ‘small’ as you read on) in some buildings, there are a number of areas that have none. The first time I was presented with stairs to the aforementioned seminar room, I walked up them. The next few times I couldn’t due to pain and fatigue. I do a lot physically with my limitations already, so forcing my body to ascend stairs and endure pain as I sit through a lecture or seminar is not productive. I have found that having incredibly supportive colleagues and mentors is not enough. They cannot erase the stairs that must be climbed or make the paved streets straighter. It is illogical that given how inaccessible rooms and buildings are in a country that has so many laws about being inclusive (see The Equality Act 2010).

At an individual level, not being able to participate fully in the both the academic and social aspects at an institution is isolating and pushes me, as a disabled person, further into the periphery of university life. This is not an unfamiliar feeling: to sit and give people my attention when the pain sears through my body, being too exhausted but wanting to attend something important, swallowing medicine to get through the day. The difference between this ‘normal’ and my current locale is that the physical barriers become much less about my in/abilities and more about the spaces that I am barred from, where the hurdles are concrete steps, uneven pavements and the way this has been allowed to continue into 2017. It is in the spaces found outside of the rooms beyond my physical reach that I stand (often alone) and feel defeated. It is infuriating but also incredibly sad. Why does an institution that has so much to offer is so exclusionary?

Without extra challenges, as a sick graduate student, it’s a David and Goliath battle, a weak body pitted against a myriad of challenges that form one giant monster. Pain, fatigue, deadlines, nausea, weak immune system, dysfunctional autonomic system, rest to fit in around all of this, and not forgetting to eat. It’s a constant roundabout of things to do, to cope with, and to juggle. Add on the normal pressures of completing a PhD (and particularly in anthropology where your body is your main tool as you undertake intense fieldwork – data collection – to understand the lives of your participants), I have a challenging schedule. Having environmental barriers further debilitates and narrows one’s options to participate in the very world in which one continually fights to carve out a space for oneself. Sadly, to be at Cambridge has meant more about adapting to an able-bodied world and less about engaging with my research.

Aptly put by this blogger, ‘when having to constantly seek out whether there is building access [to events], you’re having to foreground yourself as someone disabled before you get to present yourself as someone who is a badass researcher. Psychologically, achieving the inverse of this is hard enough with a temperamental body. Additional reasons to reinforce this lexical ordering of identity just aren’t welcome, especially when they’re avoidable if the access information was just made public.’ Indeed, this is a problem for many disabled people. We are in 2017, a time where one would hope accessibility issues would be minor. I could spend my time here unseen. If buildings were more accessible, I would not have to voice the concerns here. However, I know that if I were here full-time I would be reluctant to step forward. This makes it more of an imperative that I advocate and highlight the need for the university to be more inclusive.

The life of an academic (graduate, post-doc, research associate, lecturer) demands nothing but commitment and hours of input in order to survive within the academic setting. If healthy individuals feel the pressure, how are disabled people to speak of our struggles without inviting a spotlight that questions whether we deserve a place at the table to begin with? And why are people generally uneasy when the topic of disability is brought up? One thought: the systemic inequalities and oppression disabled people experience within institutions highlights how uncomfortable able-bodied people are with the concept of (any kind of) vulnerability. Disability studies have shown that one of the reasons able bodied people struggle to engage in dialogue about this topic is because anyone could become disabled and require help. Further, talk of limitations muddies the image of climbing the academic ladder or striving to be the best you. Thus invisible (and literal in the sense of lack of access) boundaries are created between the ‘able’ and the ‘dis-abled,’ and we become (alongside other oppressed minority groups) the Other (Ahmed, 2017 also writes to this).

At a wider level, a disabled person cannot study sociology at The University of Cambridge. There are specific spaces that it is not possible for disabled students to access. I’m here to ask, what message does this reproduce? In the first instance, certain bodies are more welcome than others. Yes there is a disability resource centre at the University, which I have no doubt provides help to those needing it, but I have to ask: where are all the disabled people? According to a study done in 2015, 1 in 10 students in tertiary education identify as disabled. Why am I seeing and feeling a disregard for those who inhabit this world differently to how able bodied persons might? Discarded before they are even acknowledged, the very smallness of the space that we are being given (if that) feels like a cursory attempt at inclusivity that fails. And the lack of access that I seek to this space but often cannot inhabit tells me something. To block, to restrict access, to continue to oppress, to ignore, speaks of what value is given to disabled people. And in turn it is reproducing the message that they are inferior to able-bodied individuals. To be a disabled person, it is always in proximity to the ‘abled’. Indeed, a disabled body creates the illusion that the able-bodied is the superior one.

Back to spaces. When I’m well enough, I walk around some of the streets close to my office. It is an incredibly beautiful town. Yet on bad health days, I have not felt like I belong. However, encouraged by my colleagues I have found space (for example in my office) that is inclusive, welcoming and non-judgemental. However beyond this, rooms can turn into spaces to fear, and ultimately avoid. Each space resides in beautiful buildings, but I have become smaller and voiceless. Until now. A colleague said something that struck a chord with me recently: don’t think you aren’t worthy of being here. Push the boundaries. Push to make them more flexible. And she is right. Waiting for others to realise anything can be futile. The best way I know how to push against the tide is through writing, experimenting and challenging inexcusable discrimination with the my own truth in order to challenge the norm so that those placed outside of it are not ignored.

*To note, this is not about my colleagues at Reprosoc, or anyone else that I have the pleasure to know in the Sociology Department. They make life a bit easier.

About the Author

Hannah is a PhD Candidate at Victoria University of Wellington and a Visiting Scholar at The University of Cambridge, UK.

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.

You have MS

Written by Stephanie Zihms 

After 10 months of tingly arms & legs, a bout of optic neuritis, unexplained tiredness and brain fogs, as well as doubting my own sanity – I was finally diagnosed with MS (Multiple Sclerosis). Even though this was not entirely unexpected it was still a shock and at the same time a huge relief. My response turned out to be ‘full on research mode’. I searched the web high and low for information and anything related to MS – funnily enough my parents did the same – must be a family trait. Probably for a good month or so, I was in a haze of information, feelings, uncertainties, insecurities, strength – or to put it bluntly I was one big mess on the inside but very functional day-to-day.

After my family and some close friends, my supervisor was the next person I told, mostly because she was there when I had no clue what was going on and it just felt right to tell her. I also pretty quickly decided to tell HR because I wanted them to know in case things got worse unexpectedly. I recently came across this blog post from Heather on The Mighty. She also tweets as Dizzy the Donkey which is worth a follow. The first thing that struck me was that she decided not to tell people because of the fear of being judged – I had exactly the same fear of being judged or perceived as lazy, slacking or not working as hard, which was one of the reasons why I decided to be somewhat open at work about my MS diagnosis. I told close colleagues and office mates and others if it came up due to people noticing changes; most notably, I had to explain my new diet to my lunch club colleagues. This was followed by waves of "but if I admit that I have to change my working hours or ask for other adjustments, I would be considered not as good an academic". I have never really been a 24/7 academic and always valued my weekends and time off but this was never visible at work. Now, with adjusted hours, 1 day a week working from home and days where I looked like s*** it’s a bit more obvious that I’m not 100% fit all the time.

The first thing my supervisor told me was “now you have a reason to take care of yourself”, which is kind of sad because we all should take of ourselves in whatever form that happens. But for me this means I have to be more sensible about how I plan my work, how I set deadlines, what activities I agree to etc. To be fair, at the beginning that didn’t seem to be too big an issue. I agreed to work 1 day from home and adjust my hours as needed; on a good day work a bit more, on a bad day leave early. Outside of work, this meant changing my diet and exercise regime, as well as starting my day with a 10 minute stretch (which I actually manage most mornings).

It took a field trip in mid-February to realise that I have to treat a good day as a normal day and not work more. We went to a geological site that I was excited to show a visiting researcher from Brazil. I had been feeling great – diet and exercise seemed to be working so off we went. The day was very cold, windy and we ended up on site for 6 hours with only a break for lunch. That evening, I felt tired but not necessarily more than after similar days like this – however I couldn’t get any heat in my legs. In hindsight I now know this was a tell-tale sign that something was not right. I ended up off work for 2 days due to severe fatigue. Well done me! By Friday I started to feel better again and another week later I think I am fully back to “normal”. This was quite a big shock to my system and it really highlighted some other issues creeping up – particularly the realisation of "that’s it now – You have MS – life is not going to the same"! For a wee while it felt as if this meant Life is also going to be rubbish. This is, of course, not true but at that time it felt like it.

During these pretty shitty weeks of feeling super low, the counselling sessions really helped. These were offered to me from my employer after I told them about the diagnosis. It took me a while to go and I had to reach a low point where I didn't know what else to do to get me to go. I had my first session on 8th February, about 3 months after my diagnosis. I have now had 4 sessions. They have helped so much and I am glad that they were available to me from work because I had access quickly. HR set up the initial contact and told me to call them if and when I needed it – after calling them I had an appointment 3 days later. Since I did pick up the phone at a low point, this quick access was so important because the first 3 weeks in February were particularly difficult and if I had not had counselling, it could probably have been a lot worse. Unfortunately, I have to say that this, together with an occupational health assessment and reasonable adjustments, is all that my university offered – tick box requirements. There is a disability service but this is aimed at students, there is access to assistive technology – but this is not widely advertised – and again does not really help with the impact on mental health, feeling of belonging and emotional aspects of a recent diagnosis. Through contacts, I found out that there is a type of peer support group but this was not publicised in a way that I knew about it when I needed it. I also found out that we don’t have a working group for disabled or chronically ill staff or a representative on any working group related to staff. I don’t think this is ok and I want to make sure that members of staff that go through something similar in the future have these services available and are aware that they exist. This can only really happen through openness about my own diagnosis and a little bit of lobbying.

Through some existing connections at university I should be able to get some of these things rolling and I’m hoping to get more involved. A key factor in deciding to be open and get more involved has been the Chronically Academic network. This was one of the first forums or networks I joined and I felt very welcome and supported.

About the Author

Image of Stephanie on fieldwork
overlooking a rural landscape

Stephanie Zihms is currently working as a postdoc in Carbonate Geomechanics in the Institute of Petroleum Engineering at Heriot-Watt University. Her research tries to understand why rocks deform the way they do and what controls this deformation – crystal size, crystal shape, pore size or pore shape? Or is it the mineralogy or how the rocks formed in the first place? By deforming different rocks under different conditions in the lab she is trying to find some answers. This research and the findings are relevant for a range of subsurface processes like hydrocarbon extraction, geothermal energy production or Carbon Capture & Storage applications. Basically anytime a liquid or gas is put into the subsurface or extracted from the subsurface the conditions change and the rocks will response to this change – by understanding what controls this response within the rocks (grains , pores) we can predict the behaviour in the subsurface. Stephanie was diagnosed with MS in November 2016. To read more about her life as a Chronically Academic also check out her blog: stephaniezihms.wordpress.com.

Ten Ways to Make Conferences Accessible to People with Disabilities

Written by Debra Guckenheimer 

Debra kindly gave us permission to re-post this article from medium.com.  The original can be found here:

ten-ways-to-making-conferences-more-accessible-to-people-with-disabilities

Attending workshops, lectures, symposium, conferences, and other events are difficult or even impossible for some people with disabilities. Rarely have I seen disability given much thought in conference planning, even when the topic is diversity and inclusion.

Here are ten ways to making your conferences more inclusive of people with disabilities. Many of them cost little to nothing other than a little forethought.

1. Accommodation Point Person:

   Assign a person to be responsible for providing accommodations when needed. This person ideally should have some training in disability inclusion and encouraged to think creatively about how to accommodate potential attendees and speakers. Publish a phone number available during the event so that someone is available to address issues as they arise.

2. Advertising and Publicity:

   Include a statement about your desire to be inclusive of people with disabilities. Provide contact information for your accommodation point person as well as information about all accommodations you have arranged. All photographs in publicity should include a caption describing the picture for the blind and visually impaired who use screen readers.

3. Interpreters:

   Provide an option of a deaf interpreter. If you have the funds, hire the interpreter for all events or at least the larger sessions. Having the interpreter allows for attendees to not have to make the request in advance as well as demonstrates your commitment to inclusion. If funds are tight, offer to provide an interpreter upon request.

4. Ushers:

   For the blind and visually impaired as well as for people with difficulty carrying materials around with them, have someone available to escort people around large conference spaces. If your event requires walking across long distances, have wheelchairs available for escorts to transport participants who need help getting across the space.

5. Parking:

   Does your space provide adequate parking spots for people with disabilities? If lack of parking is an issue, consider providing extra reserved spots for those with disabilities. Consider how people with wheelchairs as well as those without but who have limited mobility can maneuver the space. If a separate entrance is needed for those who cannot climb stairs, make sure the entrance is not locked. Allow people to independently be able to enter your venue. If it isn’t self-explanatory, have clear instructions for where ramps and reserved parking for those with disabilities are located.

6. Location and Set-Up:

   Be sure your venue is wheelchair accessible — both entrance and bathrooms. When planning the set-up of your room, ensure that isles are wide enough for wheelchairs. Leave space at the side and back of rooms so that people who need to stand can do so.

7. Inclusion Supplies and Supports:

   Want to go above and beyond? Provide a separate space where attendees can comfortably relax, especially for longer events and conferences. Have more comfortable chairs and foot stools in these spaces. Ensure space for attendees to stretch there if needed. Inside your event, provide back supports, cushions, and/or portable foot stools so that attendees can make the seating fit their bodies.

8. Food Allergies and Intolerances:

   If you are serving food at your event, consider taking a few steps to allow participants to keep themselves safe. Keep common allergens out of your menu, and announce menus ahead of time including if the menu is free of these. Keep your event space peanut/tree nut free since those allergies often respond to any exposure. Label foods being served (or if using wait staff, have them informed) including if they contain and/or are free of common allergens. If you are aware of an attendee having an allergy, do what you can to accommodate. Providing an alternative food is more inclusive than asking an attendee to bring their own.

9. Audio/Video Streaming and Conferencing:

   Being physically present is just not possible for all people. If you take advantage of one of the many technologies available to audio/video streaming or conferencing. At the most basic, you can allow people to hear and see speakers. With more investment, you can allow speakers to present and participations to ask questions without being in attendance.

10. Social Media Participation:

    With social media, we can rethink what participation looks like. Create a hashtag for your event so that participants can use it to follow each other’s posts. Create a Storify page to track postings and create a permanent website with tweets and streaming. Provide a listing of all speakers and participants that include social media used to encourage participants to connect. Virtual Connecting is an organization is rethinking academic conference participation. They have ideas about how to connect people physically present as well as those participating online.
Don’t stop with my ten tips. The best way to be inclusive of people with disabilities is to engage in conversation. Ask people with disabilities that you want to participate at your conference what they need. Be open and creative. Making your conferences and other events more inclusive for people with disabilities will also make them more inclusive for all people.

About the Author

Photo of the author

Debra Guckenheimer is a Research Associate at the Clayman Institute for Gender Research at Stanford University. Previously, she was a Research Associate at the Hadassah Brandeis Institute at Brandeis University, a Visiting Assistant Professor at Bowdoin College, and a Postdoctoral Research Associate with the NSF ADVANCE Institutional Transformation Program at Northeastern University. She is an expert on social change efforts to reduce inequalities based on race, class, gender, sexuality, and disability. She has appeared in USA Today and on public radio. Her work has appeared in the Women’s Studies: An Interdisciplinary Journal, The Feminist Wire, The Handbook of Positive Organizational Scholarship, and Doing Diversity in Higher Education. She has a Ph.D. in Sociology from the University of California, Santa Barbara and a B.A. in Politics from Oberlin College.

Achieving Greater Acceptance in Academia

Based on an interview with Ian Shipsey 

I grew up in a working class district on a notorious council estate (housing project) in London's East End. I was hearing at that time. My high school had 180 students per year. Only two of us went to university. My parents had left school at 16. As far as I am aware none of my fellow students had parents who had attended university either. I went to the local university; Queen Mary, in London to study physics. I then took a PhD in particle physics at Edinburgh where Peter Higgs was one of my teachers. Shortly after arriving at CERN, the main particle physics lab in Europe, I fell in love with a wonderful Italian physics student who was heading to the US for a PhD so we began a transatlantic relationship until I had completed my PhD then I went to America to join Daniela. Daniela and I married and have one child. Shortly after getting married, while Daniela was still a student and I was a postdoc and both of us were working on the CLEO scientific collaboration at the Cornell Electron Storage Ring (CESR) a particle accelerator at Cornell University, I contracted acute myelogenous leukemia and was treated by a remarkable team of doctors and nurses at the Cornell University Medical School in NYC for more than one year. An industrial strength dose of chemotherapy beat the cancer but left me without an immune system and a medically necessary dose of broad spectrum antibiotics protected me until my own immune system had returned. A side effect off the antibiotics was irreparable damage to the hair cells in both cochleae resulting in severe sensorineural hearing loss.

Although still a postdoc I had already accepted a tenure track assistant professorship before becoming ill. I was very fortunate, had the timing been different and I had become ill before job season had commenced I would not have had that position and would have been regarded as unemployable by many. I accepted the job about a week before any symptoms appeared. The postdoc was at Syracuse University and the faculty position at Purdue University. After recovering enough to take up my new position about a year later, I then moved to Purdue which is about 120 miles (180 km) south of Chicago in Indiana and Daniela came too as a postdoc.

The unconscious assumption of able-bodied people is that deaf people are less able to teach or conduct research. Being underestimated is OK up to a point. In my field in the US it is typical to take one or two postdocs, each of 3 to 4 years duration, before becoming an assistant professor. I had only been a postdoc for 2.5 years when I was offered the job at Purdue (and jobs at other schools) so I was considered very promising. Purdue was a big physics department with about 60 faculty and about 57 of them had never met me as hearing person. They thought life had been dealt a very tough hand, they were kind and empathetic but they found it hard to consider me any longer as promising.

It was assumed I could not teach and nobody was quite sure what to do so I was left to my own devices. I did some research partly funded by the start-up given to me by Purdue and then wrote three proposals for young scientists, two of which were successful and resulted in very significant funding. One was the National Science Foundation National Young Investigator Award which that year only two people in the US were given in my area. Having won the awards, it is customary to be considered for early promotion to tenure to pre-empt other universities from poaching but in my case I had no teaching record so I could not be promoted. To fix that I was given an opportunity to teach which I had no experience of doing. The teaching experience was wonderful. Being deaf served to make me a better teacher because I strived harder to be especially clear so that the number of questions students had tended to build and extend the material I was explaining rather than asking for further explanation of what I had already "explained". At the end of the semester I received the physics professor of the year award. The award is given by the physics students at Purdue including those I had taught. It means to this day a great deal to have received it. The award helped to establish my ability as a teacher and I was promoted to tenure. Meanwhile Daniela became an Assistant Professor and our daughter Francesca was born.

When I moved to Purdue I continued to work at Cornell for most of my research. A small network of friends on CLEO, all able-bodied, took it in turns to help me by taking notes at meeting. They said that in front of their eyes they saw a transformation in my ability to contribute, often decisively, to discussions. Eventually this led to I and several others developing some new ideas, and to me being elected the scientific leader of the collaboration and the award of very substantial funds to conduct a new program in particle physics at Cornell. It was while leader of CLEO that I explored cochlear implants and received one.

Prior to my cochlear implant, communication with students especially in large classes was difficult. To solve the problem I asked students to write questions down on paper and pass them up to the front of the class. Students in large-enrollment physics courses are often very shy about standing up and asking questions; writing the question made it anonymous and hence easier for students to ask questions. The method was subsequently tried out by some hearing faculty to good effect. I sometimes communicated with my own doctoral students through bone conduction; the student and I both leaned our heads against a wall and the student talked into the wall and I could sometimes comprehend what was being said though the vibrations combined with lip reading. In any situation where I was not a focus (such as in the audience at a conference) understanding what was happening was very difficult so I avoided conferences and did not in general network. Conversations were difficult. Hearing people feel awkward speaking to deaf people first because nobody enjoys saying something and not being understood and second very few hearing people have had any experience of talking to a completely deaf person.

There were two turning points in my ability to communicate. The first was that physicists in general are very interested in the research of other physicists. In the CLEO collaboration at Cornell, everyone knew me as a hearing person who became deaf. This meant that the deaf stereotype was not applied to me so strongly by that group and there were several faculty at Cornell who proactively began to help me with communication, offering to take notes for me. In addition, I began to request stenographers at Purdue and Cornell.

At conferences today, I simply sit in the front row and if I cannot understand I ask people to speak louder and slower and to repeat what they have said but I would not have had the confidence to do that in the early days.

I did not find it easy to gain access to stenographers as they are few and expensive. In principle the deaf students and I had the right to a stenographer, but there were more of us than there were stenographers. I used stenographers occasionally until 2003 when I had the cochlear implant. It’s quite likely that there are many parts of the world where students who are unable to hear do not have sufficient access to stenographers today.

In my field, some of my postdocs and students will typically be based at CERN. Communication remotely was very difficult before I received the implant. It was mostly text based (shared electronic logbooks) and email. Now we communicate via Skype and video conferencing. On experiments in particle physics everybody takes it in turn to run shifts operating the experiment. After I lost my hearing, but before I received a cochlea implant running shifts was hard for me, as although we have a lot of visual information when we run shifts, there are also purely audio cues such as alarms that it would not be possible for me to hear. However, colleagues happily and kindly installed visual equivalents (warnings on a computer screen when the alarm sounds). This enabled me to feel comfortable taking the shifts as with the accommodations that had been made I could now do the job as well as when I could hear and as well as other physicists. Much of the work I do is in my office, but when in the laboratory the work is visual and I have many wonderful students and postdocs and engineers and technicians working with me and helping me, almost all are able-bodied.

I find it difficult to understand amplified voices. This is because amplification distorts voice as well as making it louder. For hearing people, the noticeable effect is the volume increase whereas the distortion is usually unnoticeable or at least not distracting. For many with a cochlear implant the distortion dominates any gain in volume. This is because cochlear implantees have less sense elements than those with natural hearing so our auditory pattern recognition is inferior. If the auditorium is small I request people do not use a microphone to ask questions but if the auditorium is large I ask the audience to write down their questions.

Before I had my hearing restored I was elected three times to be the leader of the CLEO Collaboration, a group of 21 universities and about 180 scientists at Cornell. After I received a cochlear implant, I became Head of the LHC Physics Center at FNAL and was elected Chair of the Collaboration Board of CMS (one of the two experiments at CERN that discovered the Higgs). I was hired at Oxford to become Head of the sub-department of Particle Physics in 2013 many years after I became deaf and had a cochlear implant.

I need no special resources now except the cochlear implant. I do ask people to look at me when they are speaking to me, and when people mutter I ask them to speak clearly. I do not participate in the sign language community because nobody I knew professionally or outside work could sign. I have met with signers though to talk about my experiences with the aid of SL interpreters. Since receiving the implant, I have found that I am much more likely to be placed on committees and more frequently asked to give talks and more generally given opportunities as it has become easier to communicate. Throughout my career in the US and UK my colleagues have always been very supportive.

It is a real phenomenon that many scientists feel conflicted about acting publicly as a scientist with a disability because there is a risk they might become less known for their science and more known for their activism. The same thing happens when an academic engages significantly in outreach to the public or to school kids. One starts to become known for outreach and academic colleagues will question if you are a devoted academic. My strategy to deal with this is as follows: if I am invited to an event to give a talk because I am deaf, I concentrate mostly on my work, what I have accomplished and how rather than concentrating on the disability. The result is that people see an example of a practicing scientist passionate about their work who happens to be deaf. With this strategy I am not trying to trivialize the disability, I am trying to show that its effects can be overcome.

One of my doctoral students had a very severe speech impediment. He was an outstanding student with outstanding grades, yet he had difficulty to find a professor to supervise his thesis. He was very bright and we did great work together. Looking back now it seems to me a person with a disability is sometimes more sensitive to the difficulties faced by others with disabilities, and in some cases this makes them better prepared and more confident they can effectively help and supervise the student. That is certainly the reason I took the student. I did not see the disability as anything other than surmountable.

I generally disclose my deafness. I am proud of it. O Course, I would prefer to have natural hearing but I am inspired by the incredible technology of a cochlear implants that, when married to a human brain, can enable an implantee to understand much of the auditory world. To achieve greater acceptance of disabled people in academia, we need more role models. We need access to the right types of support so that people with a disability are not disadvantaged by that disability to the extent possible.

 About the Author

Ian Shipsey is the Henry Moseley Centennial Professor of Experimental Physics and Head of the Sub-Department of Particle Physics at the University of Oxford and Professorial Fellow at St. Catherine’s College, Oxford.