On the 4thof July Jacqui Lovell attended the Centre for Culture and Disability Studies (CCDS) at Liverpool Hope University in order to take part in a CCDS Day during which the hosting Professor David Bolt launched his book, Cultural Disability Studies in Education: Interdisciplinary Navigations of the Normative Divide. Jacqui offered to present at this event in her newly acquired role as an Associate Research Fellow on the AHRC funded d4d programme hosted by Bath Spa Uni. What follows is an overview of the event and Jacqui’s experience of being part of this process.
I hope this may prove to be both entertaining and informative to you the reader, paralleling my experience of the day. I’d also like to share some insightsI gained related to this event and a play I attended with my friend in relation to my awareness (or in my case my lack of awareness) of the needs of people who identify as visually impaired.
The day started with my panicking in case I was late and going around and around a diversion in Liverpool (as a bridge over the Mersey was closed) at least five times before I finally took the right exit to get to Liverpool Hope University. This became a metaphor for my learning on the day but I’ll say more of this later… I just wanted to wetyour appetitesufficiently enough for you the reader to keep reading.
I arrived to the opening address of the day, given by Dr Claire Penketh and sat down next to my colleagues Alan Sutherlanda community co-investigator on the d4d programme and Trish Wheatley from Disability Arts Online who informed me, in whispers, that Dr Lucy Burke from Manchester Metropolitan Uni, who was due to provide an overview of d4d, had sadly been unable to attend and present as she’d previously hoped. Trish followed this up by asking if I would like to deliver the presentation an offer I quickly declined for what I imagined to be obvious reasons. I was already anxious about doing my presentation, and Iknewthat one, so the prospect of ‘delivering’ one I didn’t know was enough to put the proverbial cat among the pigeonsbut thankfully Trish was prepared for my answer and was doing this herself, phew!!!
Trish’s overview of d4d ably, or should I say disably introduced the audience to the d4d programme and set the stallout, so to speak, demonstrating the breadth and depth of her knowledge of the different projects contained within the programme. Though I must admit it also left me feeling like a bit of a fraud for not being as cognisant of all that was taking place but I recognised this takes time to learn and even more to fully understand.
This was followed by Allan reading some of the transcription poems he had created that constitute his work entitled ‘Thalidomide Acts’. Allan composed poems using the words of his interviewees, who in this instance was Mat Fraser. Allan has a presence and a speaking voice that commands attention from any audience and his rendition was very well received. I think poems really come alive in a different way when spoken by the poet who wrote them. I was interested to read Lucy Burke’sreflections on these poems being read. Lucy’s, as previously mentioned is also a member of the d4d team, her questionsreflect the ethical issues involved in using another person’s words and on what gets put into and left out of a piece of literary work. She certainly made me reflect on the visibility and invisibility of the disabled people who take part in the co-productive processes that are an integral element of the d4d programme.
Trish, was next up, delivering her provocative presentation entitled ‘Kicking the Bucket’. In this she outlining a short history of Disability Arts and finished with a provocation related to the question, ‘Are we in an era post Disability Art?’. The provocation, published hereon the Disability Arts Online website, contains the questions below:
- If we define Disability Art as art made by disabled people for disabled people about the experience of disability, how might we define post Disability Art?
- How has the shift in economic policies and the withdrawal of state support for disabled people affected the creation of disability art?
- Have the barriers faced by disabled people changed?
- How do we see those changes played out through our art?
- What impact has the internet had on the disability sector?
- How has the shift from disabled people coming together in the communal space to communicating in the digital space affected our disabled identity?
Having only recently engaged with ‘disability arts’ as a genre and as an emerging disabled artist (poet) I felt less than qualified to answer these questions. However, as someone who has engaged in the disability sector in various community spaces, places and ways, I have seen the extent to which this so called ‘austerity agenda’ and its associated governmental actions, or lack of them, have disproportionately affected disabled people. See articles from the media re this here, hereand hereand from the lovely people at Disability Rights UK (DRUK) here. In addition, there is a DRUK presentation re austerity and its impacts available to download here.
Disabled people are not alone in this as women, single parents, people from diverse ethnicities and many who do not ‘fit’ the white, middle class ableist mould are also disproportionately impacted by ‘austerity’. Check out a recent reports on all of these diverse groups of people herefrom the School of Law at Warwick University. I don’t know about ‘disability arts’ but the picture looks bleak for us all if we don’t stand against these toxic and insidious ‘austerity measures’. They fall far too short of the yardstick and simply do not ‘measure up’ to a world in which diverse people are valued and treated with the dignity and respect that is their individual and collective Human Right.
Getting down of my soap box (for now) and returning to the CDDS Day and the presentations. I was next up, outlining a discussion I’d been having primarily with myself entitled ‘Visibility-Invisibility, pedagogy, participation and process’. I hoped this reflected the complexity of the thoughts and experiences I’d been having recently around being seen or unseen and my having to ‘come out’ on a regular basis either as a lesbian, a ‘mad’ woman, or as my friend reminds me who is herself disabled, through ‘owning my crip’and the impact that Palindromic Rheumatism has had in recent years on my life, work and my identity as a disabled woman. I applied these to my work as a participatory action researcher and the radical research approach that I use with people from diverse backgrounds. Noting that Grande (2004, p.3) a Native American scholar suggested ‘one of our primary responsibilities as educators [is] to link the lived experience of theorizing to the process of self-recovery and social transformation’. I described participatory action research as one way of doing this ‘with’ as opposed to, ‘to’, ‘for’ or ‘at’ disabled people. Noting that Parker (2005) advocates for a radical approach to research that is politicised and recognises in the words of Audre Lorde that ‘the master’s tools will never dismantle the master’s house.’ Parker (2005, p.7) described the task of the qualitative researcher as needing to be one of opposition to the ‘popular view’ in order to facilitate those aspects of experience and activity that are hidden to be illuminated. To make them visible to all through being attentive to and understanding our privilege as white, European people. This is similar to Lucy’s approach but from a radical research perspective.
When undertaking research in this way within a paradigm of anti-oppressive practice I noted the potential for research to become an act of resistance in itself. Potts and Brown (2005, p.261) echoed this in their supposition that power and knowledge are intrinsically relational and political. Enacted in our relationships with each other. Research relationships then are viewed as having the potential to be either oppressive or resistant and are acknowledged as often ‘a complex combination of both’. Strega (2004, p.199) supports this when discussing the choices made in relation to the methods we as researchers ultimately use, stating that ‘For researchers concerned with social justice, the answers represent not just methodological choices, but choices about resistance and allegiance to the hegemony of Eurocentric thought and research traditions—the master’s tools’.
So how can we dismantle this metaphorical master’s house within the ‘white walled labyrinth’ that is the academy?
My request is that, in our capacity as ‘masters’ (to some extent) of our own destiny, we raise our awareness of the privilege and power we wield as co-partners in the / our research processes. I therefore invited the audience and now you the reader to ask yourself the following questions.
How are you / we creating or co-creating in the participation process when undertaking research with or (sadly) ‘on’ disabled people?
Do the choices we make in our research methodology reflect our awareness of our privilege or serve to mask it?
Do we work in equal partnership with the people we are doing the research with?
How is this equality or lack of it reflected in the participation process?
And lastly, what do our answers to these questions reflect back to us about who holds the power in the research process?
Answers on a postcard please……only joking, though any thoughts / reflections / feelings, ideas and responses re any or all of the above, please do get in touch at firstname.lastname@example.org email@example.com.
After lunch we came to the highlight of the day as Professor David Bolt, launched his book‘Cultural Disability Studies in Education: Interdisciplinary Navigations of the Normative Divide’ published by Routledge.
As a Professor of Disability and Education within Liverpool Hope University, David began as you’d expect by giving us an overview of the format of the book. He explained that it has been written in the educational style of a conversation.
(I couldn’t help wondering if Paulo Freireand his dialogical approach to education would get a mention. Although he didn’t, I include a link to further reading on this herefor those of you who may be curious to know more about Freire, his life and his work.)
In addition to recommended reading, David explained that there is a list of indicative questions, reflective of the material contained within each chapter, for use with students as an aid to discussion and dialogical learning. In its softback form the book costs£24 so is affordable to many and could be bought with an additional 20% off for the sum of £20 using a coupon very kindly given out on the day. Included below for anyone who would like to use it.
The book is interdisciplinary reflective of disability studies and draws on David’s professorial work and his position as Editor in Chief of the Journal of Literary and Cultural Disability Studieshoused within Liverpool Hope University.
Prior to outlining the different aspects of David’s talk, I’d like to share with you David’s process of delivering the presentation as this is what impacted me the most. Although I have to say that I will definitely be buying the book as it sounded fascinating, highly critical, reflective and definitely relevant to d4d but I digress.
My point is this. Having worked in various capacities within the National Health Service in ‘learning disability’, general health, mental ‘health’ and research and development sectors, I have NEVER heard anyone use audio description(AD) to describe their slides for the benefit of the people in the audience who identify as visually impaired, partially sighted or blind.
Added to this is my experience during the last year of my PhD process of supporting an undergraduate student with a visual impairment, who had great difficulty in seeing lecture notes and presentations, and as such was often sent lectures notes in advance. At no time during this year did anyone take account of their need to be included in the lecture to the extent that they audio described what they were doing on a moment to moment basis. Therefore, David’s care and attention to the ‘process’ was for me such a refreshing change and has challenged me to do likewise.
It was particularly apt that in amongst David’s presentation he talked about the concept of ‘critical avoidance’. It strikes me that this is crucial to my understanding of why after my long career I had to attend an event led by a disabled person to fully grasp the meaning and importance of this aspect of the process of inclusion. The non-verbal communication that AD affords people is critical to their being part of the process and of understanding, as much as possible, what is taking place in terms of non-verbal communication and information presented in a visual format, during the moment to moment presentation of information to an audience. Please see one of David’s previous book chapters for a fuller discussion re ‘critical avoidance’ here.
David then explained how in his opinion critical avoidance is ‘duplicated in the academy on a curricular level’ in that cultural disability studies is often ignoredwithin the humanities field as a whole. This is despite the fact that the humanities would greatly benefit from the diversity of knowledge of disabled people who have had unique experiences, that those people without impairments have not had and are unlikely ever to have. I can only concur with David’s suppositions in this regard.
David framed his discussion within his ‘Tripartite model of disability’ in order to bring to our awareness the indifference, difficulties and qualities that are needed to engage with the complexity of disability. I made a written note to learn more about this model and explore how it could be useful in my role and within the d4d programme. As David explained indifference manifests itself in such a manner as to give no consideration to disability, ignoring it but not in a direct way. Difficulties he described as barriers at a personal level reflecting on his experience of getting in to his workplace at the university on that and every other day as being ‘difficult’ to achieve given the multiplicity of barriers in the environment to disabled people.
Qualities contained within this then include an appreciation of disability as an identity as we might appreciate gender or other characteristics of the person. This is not focusing on the individual in order to hold them accountable for the environment. All of the above add something to the social model of disability. I could only concur as it certainly brought clarity to the individual experiences that I have as a disabled woman living and working in a world designed around the needs of people who are abled bodied.
David then took us through the various chapters in the book, outlined below introducing us to the individual texts and books that he drew on when writing each chapter. My reading list grew accordingly as many of these were texts or works with which I was not familiar.
Chapter 1. Visions from the Yellow Decade: begins in the 1890’s using as its primary texts both ‘The Blind’ and ‘The Light That Failed’. Here disability studies and aesthetics are explored for their ‘residual existence’ via the ‘troubling texts’ used.
Chapter 2. Side show to cinema: discusses disability studies in light of the film industries horrification of disabled people. The text used is Tom Browning’s ‘Freak’ including disabled actors which, as he pointed out, is not often the case in todays cinema. This brings into the foreground aspects of relationship and disability.
Chapter 3. Remembering: ‘The Drowned and the Saved’ was the text used to expound on disabled people’s experience and testimony, through focusing on disability and holocaust studies.
Chapter 4. In the Log House: focuses on disability and gender studies using ‘Shiloh and Other Stories’ by Bobbie Ann Mason as its text. It considers the place of disability in the story using intersectionality and a feminist track.
Chapter 5: Stuff Happens: concentrates on disability, happiness and the pursuit of cure. It uses ‘Molly Sweeney’ by Brian Friel and ‘Happiness is Blind’ by George Sava as its texts to explore ‘Crip histemology’, this is like epistemology but disabled led. The concept that happiness is diametrically opposed to disability is explored.
Chapter 6: End of the rock star: draws on disability and music studies and ‘the passage of time’ as a dichotomous passage from the past to the present. Songs used included ‘The Days of Our Lives’ by Queen and ‘Heard’ by Johnny Cash. This chapter draws on Dr Bay’s work to explore the idea of ‘chronic illness’. The essence in the first song is ‘love’. The ‘pain’ in both songs are used to deconstruct the notion of ‘residual existence’.
Chapter 7: One of the Crowd: attends to disability humour and the contradictions of comedy. ‘The Peep Show’ is positioned in opposition to disabled people leading disabled humour. As David said ‘in the realms of irony whatever we come up with is problematic’.
Chapter 8: On the Campaign Trail: explores advertising, marketing, mass media and levels of representation using as its starting point ‘Stigma’ released in 1966 by Paul Hunt a ‘classic text’ (that I should but sadly am not familiar with).
David ended with questions and we broke for a quick comfort break before proceeding with Dr Owen Barden’s presentation entitled ‘Demanding money with menaces: fear and loathing in the archipelago of confinement’. Owen has been working at CCDS for about six years in his capacity as a now Senior Lecturer and it shows. His presentation (online here) of his work was very stimulating and informative. His too used audio description and this demonstrated the importance of the process of presenting and the importance of being inclusive. The small group discussions we were encouraged to have were much welcomed at the end of a long day of listening.
Owen has been conducting archival research into the history of eugenics in the inter-war period. He took us through a history ranging from 1870 to the early 21stcentury using images and of course AD to illustrate the prolonged use of eugenics and control in relation to people labelled with intellectual and cognitive impairments. He drew on the theory of Michel Foucaultto analyse and present his results.
The journey that he took us on was disturbing to say the least and not surprisingly continues to this day. Owen spoke about ‘able nationalism’ and its involvement in the systematic exclusion, labelling, stigmatisation, oppression and exploitation of people with a learning disability. All of the above then render learning disabled people invisible, hidden beneath the surface but none the less discernible.
The last connection in this tapestry of reflections on this day did not take place in Liverpool but in Newport. I was heading back from some training at Bath Spa Uni and had arranged to break my journey by staying over at a friend’s house for the night. I then received the Disability Arts Online Newsletter into my inbox which I duly perused. There was a theatre performance on that day called ‘The importance of being described….earnestly?’by Elbow Room Theatre Company. The show was fully inclusive, lasted for 60 minutes and included audio description so we decided to go along. Well it was a hilarious, ironic, sarcastic, at times frenzied and always entertaining look at life in the theatre as a person with a visual impairment in an ableist world. It was more than this too in that it ventured into areas of experience in the person’s daily world that I as a person who’s sight is corrected by glasses had not thought about or ever reflected upon. I learned a lot.
But this story does not end there. I was recently required to give a micro teaching session as part of my training, the one I mentioned earlier, for a Post Graduate Certificate in Higher Education, that would mean I am qualified to teach within a university. I decided to attempt this using a similar visually focused presentation to the one I’d given at the CCDS day and to, wait for it, use audio description to do so.
Well it was a hoot, having given critical reflections to all of my peers as we’d been invited to do throughout the training session, I fell flat on my proverbial face. I started off in my well-intentioned way and half way through forgot to be consistent in my audio description by not even offering one. I had not thought about how to describe the images I was presenting in advance, so my descriptions were at best clunky and at worst ‘non-descript’. I did not allow enough time for the descriptions in the 10 minutes of time we had been allotted for the micro-teach and as you might expect I ran over time so only got half way through my presentation before the bell sounded to end. I’m glad to say that I received feedback on all of the above from my peers to enable me to do better next time. As Freire (19) reminds me, ‘there is no teaching without learning’and the more mistakes you make the quicker you learn from them.
Therefore, armed with my new insightsI am preparing to give this another go and this particular journey will not end here but will be continued…..as and when I am required to present again. I will again attempt to use audio description and I will not give up. It is often only sheer grit and determination that make the difference, for me anyway, between what I do and do not achieve. I have to use this in my daily life to navigate the difficulties the environment (and sometimes life) throw at me but what I do know is that I am like a terrier, once I get a grip I never let go. I would invite you to do the same if only to demonstrate that you too care who is included and who is not. This is something we ALL need to careabout in order to fully enact the real meaning of ‘care in the community’.