Research
You will find a complete range of our monographs, muti-authored and edited works including peer-reviewed, original scholarly research across the social sciences and aligned disciplines. We publish long and short form research and you can browse the complete Bristol University Press and Policy Press archive.
Policy Press also publishes policy reviews and polemic work which aim to challenge policy and practice in certain fields. These books have a practitioner in mind and are practical, accessible in style, as well as being academically sound and referenced.
Books: Research
The topic of ableism in music academicism is gargantuan. In this chapter I highlight at least some of the problems facing disabled people within academic musical environments. Most of my focus is geared towards issues with the conservatoire/music college environment, as I have had most direct interaction with this form of institution in higher education. However, the issues within these institutions relate to all professionals in the music industry, as performers and composers have to interact with this on some level. All musicologists started as musicians, even if only enthusiastic amateurs, meaning all experiences of performing music are directly influencing the musicological environment – even if the means of discourse has changed. What must be considered also is that the field of musicology is an observation of the professional music world, meaning that if the professional world is devoid of disabled people, musicologists will not have any disabled musicians/artists to observe either. There are four key problems within the academic and professional environment that need to be addressed for disabled musicians, composers or musicologists to begin striving for some sense of real equality (McKay, 2013; Kivijärvi, 2012; Cain, 2010; Meekosha, 2000). They are as follows:
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lack of representation;
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lack of historic figures to draw upon;
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lack of aesthetics that encourage disabled creatives;
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lack of general awareness within the musicological environment.
From a promotional perspective, the lack of representation is symptomatic of a constant rolling problem starting with the question.
Autism is a developmental phenomenon, meaning that it begins in utero and has a pervasive influence on development, on multiple levels, throughout the lifespan. Autism produces distinctive, atypical ways of thinking, moving, interaction, and sensory and cognitive processing. One analogy that has often been made is that Autistic individuals have a different neurological “operating system” than non-autistic individuals. (Walker, 2014b)
From our perspective, and including the perspective of other Autistic people we have worked with, the most important aspect of being Autistic is our sensory processing. The differences in the way we, and other Autistic people, interact and communicate socially can be explained by the way we sensorially experience the world. This sensory experience also explains our affinity for routine and structure.
Writing this is not without personal risk. Identity is not only internal but also ‘exists in the minds of others’ (Little et al, 2002: 170). Prior to 2011, cancer did not shape my identity in my eyes or anyone else’s. It does now, but I do not want people to see me and think ‘cancer’. Socrates is associated with the expression ‘an unexamined life is not worth living’ (McElwain, 2013). The need to examine all aspects of my life came into sharp focus when cancer made an unwelcome appearance. I resolved to ensure that dignity and compassion would underpin all my actions. Tony Benn said that the most helpful role older people can play in society is to encourage those younger and less experienced (Benn, 2004). I agree. As a senior academic, I am well placed to do this, and I have always subscribed to the principle of usefulness in research. While getting cancer is scary and the loss of a child to cancer is the most frightening thing of all, I felt that writing accessibly about it might help others to understand, hence my contribution to this book. My focus here is on the workplace. Colleagues threw me a lifeline and in writing this I hope to give something back.
John died nearly seven years ago, at twenty-five. Undoubtedly, my grief will last for the rest of my life, but I am functioning. Social and personal reconstruction of my identity and the feeling that my former sense of self is missing colours my engagement with life and work. Having lost a child, I feel like Sleeping Beauty’s thirteenth fairy.
The majority of people share a common sensory experience in terms of perceiving, naming, discussing and using the colours they see. A sizeable minority of people, however, experience the world differently because they have a more limited perception of colour. Statistics show that 1 in 12 males and 1 in 200 females with Northern European ancestry live with what is colloquially, but inaccurately, known as colour blindness1 – approximately 4.5 per cent of the population. This means that, globally, hundreds of millions of people are not as aware, if they are aware at all, of differences between colours or hues that the majority of us take for granted: ‘Worldwide, there are approximately 300 million people with colour blindness, almost the same number of people as the entire population of the USA’ (Colour Blind Awareness, 2018a). In the UK, approximately 450,000 children, or one child in every co-educational classroom, are unable to identify many different colours (Scope, 2018) because they have defects in the three kinds of retinal cones that respond to red, blue and green light (National Eye Institute, 2015).
Colour blindness can be brought on by conditions such as diabetes or multiple sclerosis and it can also accompany the natural ageing process in humans (Colour Blind Awareness, 2018a). That said, it is most commonly an inherited condition, one for which there is no known cure. Regarding inherited colour blindness, as the statistics above indicate, males are more likely to be affected than females because the gene responsible is carried in the X chromosome and, unlike females, males do not have a second X chromosome that usually overrides the faulty one.
On 23 March 2018, the Ableism in Academia conference took place at the UCL Institute of Education. The event was unique for the UK higher education landscape in several ways. First, the conference offered delegates a safe space to exchange ideas and theorise experiences not from the vantage point of being a typical, fully ‘able-bodied and able-minded’ academic, but from the very personal and intimate understanding of what it means to not fit the mould. The conference was not at all limited or restricted to academics with disabilities, chronic illnesses and/or neurodivergences, but the nature of the topic clearly affected and interested that group of scholars the most. I know that every single delegate had one form of need or another. Second, and related to the fact that every delegate had disclosed some need, the conference was the first of its kind by way of accessibility and inclusion. The event was organised in such a way that delegates could participate in and contribute to within the halls of the conference setting, but also remotely from home. The organisation had included ensuring the right foods would be available, people would be able to see and hear and to withdraw and relax whenever and whichever way they needed to (see Brown et al, 2018 for full details). And third, the conference stood out for its aim to have a lasting effect on conference speakers, delegates and the volunteers involved. The topic of ableism in academia, and the emotions of frustration, stress, embarrassment and failure, were just too important and raw for the conference to be a passing fad.
I am an invited guest speaker talking on the topic of ableism in academia. I have held this talk on several occasions already, I know what I am going to say, and I am so attuned to what comes next, that I can include performative elements. Today, I find myself lingering a little bit longer than usual on the topic of conferences. I have already pointed out how difficult it is to navigate the lunch-time buffet if you have disabilities.
“Let’s continue imagining. Here we are now with everyone else eating our food, and we would like to network with other conference delegates. But that won’t be possible!”
I pause for effect, and pointing to the person signing furiously to my left, I finally add:
“Because the Sign Language interpreters are on their lunch break. Again, a shift in attitude is required. We tend to see the sign language interpreters to be there for the person who is deaf; but in reality, they are here because people like me cannot sign. The barrier is not the deafness, the barrier is my lack of language.”
After the entire talk, a number of attendees approach me to have a quick chat, ask questions and to thank me. I am happy talking and explaining. I am in my element; until the deaf delegate and his British Sign Language (BSL) interpreter come up to me. I greet them both, saying hello and thanking the interpreter for his help. I am utterly embarrassed. Apart from hello and thank you, I can say nothing. I had formal education in English, French, Latin and Spanish as foreign languages, so I get by in most European languages comfortably, and because I understand how the structure works, I pick up languages quickly.
Mental health problems are widespread: close to 1 in 5 American adults experienced mental health problems in 2018 (Substance Abuse and Mental Health Services Administration, 2019a). Among them, unemployment is higher (Substance Abuse and Mental Health Services Administration, 2019b), school dropout more common (Dupéré et al, 2018) and overrepresentation in both the health care system (Owens et al, 2007; Department of Veterans Affairs, 2016) and the penal system (Bronson and Berzofsky, 2017; Skowyra and Cocozza, 2007).
Within academia, the prevalence is worse. A study (Levecque et al, 2017) in Flanders showed PhD students to be over twice as likely to score high on depression screening questionnaires, with relative risks of 2.43 versus highly educated general population, of 2.84 versus highly educated employees and 1.85 versus higher education students, respectively.
As a way to build a community around these issues, and as a stepping stone to further work in mental health advocacy in academia, we have run a group blog for academics with mental health problems since 2013. Over the years, we have slowly managed to build more and more momentum for mental health advocacy in general, and the group blog has played a role in empowering our own visibility and advocacy.
In this chapter, we describe in the section ‘Inception’ how our work with Depressed Academics started. This is followed by our design choices for the group blog, in the section ‘Choices in community building’.
Embodiment as a term is becoming widely used in mainstream society, and is generally associated with the physical body in some way. However, the definition of embodiment is more esoteric. It is defined by lexicographers as ‘a tangible or visible form of an idea, quality, or feeling’ (Oxford Dictionary, 2019). As such it has no immediate connection with the physical, lived and experienced body. There are a number of theoretical positions on embodiment, and this has implications for the ways in which it is used to conceptualise lived experience. My position is that embodiment incorporates a conscious self-awareness of the information, sensations, proprioception, images, feelings and emotions that arise from the body and the mind. In this chapter I briefly explore differences of understanding and conceptualisations of embodiment, reflect on how I understand and use the concept of embodiment and embodied and how this in turn impacts on the generation of knowledge and research that gives us an insight into embodied experience. I show how this is particularly relevant for those interested in researching the experiences of those with embodied differences, such as those with disability, chronic illness or neurodivergence.
The term embodiment is contested (Sheets-Johnstone, 2015), and part of the battle of using the word is the need to continuously define and determine what we mean by it. For some sociologists the idea of embodiment relates to how we perform our identity, the clothes we wear, whether we choose to have tattoos, piercings, or the way that we display to others how we choose to identify ourselves within society (Evans et al, 2004).
In this chapter, I reflect critically on my experiences of making my disability visible in teaching, through the process of asking students to engage in particular behaviours which improve the accessibility of my role as their lecturer. I use critical and feminist disability studies work to reflect on how this has been – and still is – a difficult, discomforting decision and process. I conclude with some reflective questions for disabled academics, and some recommendations.
Before starting, I want to make clear that my experience, and my reflection, is rooted in my embodied identity as a White woman living with a chronic illness; other disabled people will have different experiences depending on their own embodied identities, and how others read and respond to those identities. My disability is broadly regarded as invisible, which is to say that I can pass as non-disabled to an observer who is not looking for signs of my particular disability or its impacts. But I experience chronic pain, fatigue and some brain fog. Brain fog is an experience of cognitive impairment that occurs with pain and/or fatigue, such as struggling to comprehend concepts or conversation that one might otherwise find easily manageable. My own brain fog tends to come with forgetfulness, and an inability to say certain words (noun aphasia), while others might experience slurred speech, or auras similar to that of migraine (see Chen, 2014 for a cripistemological reflection on brain fog).
Western capitalist ideology has greatly influenced the emphasis on making graduates ‘corporate-ready’ (Eley, 2010), although it is argued that the point of education is for individuals to identify the dominant work-based ideology and resist becoming indoctrinated (Brookfield and Holst, 2010). Despite this, higher education organisations have embraced the corporate message readily, with an almost anxious emphasis on work-based learning. A university education is no longer limited to the acquisition of knowledge, assisting intellectual enquiry and the attainment of critical thinking skills; even in the context of neoliberal educational opportunity, everyone must graduate ready to enter a professional workforce (Olssen and Peters, 2005).
University provides opportunity for individuals to develop, grow and realise ambition. Organisations such as these pride themselves on equality. All those who have reached ‘the standard’ are welcome, regardless of gender, age, social class, race or disability. This has been created from a neoliberalist political agenda of equity (Davies and Bansel, 2007). Individuals from any part of society should be able to access the transformational power of education, increasing social mobility and economic status (Dearing, 1997). For undergraduates identified as autistic, policy dictates that there is no discrimination against your disability. For many, university life offers an opportunity to immerse themselves in an area of expertise and reconsider themselves after what is likely to have been a stressful and difficult journey through compulsory education (Petrina et al, 2017).
