Call for papers: Chronic Illness and Representation

Ana Bê and Emma Sheppard are pleased to announce a special issue of the Journal of Literary and Cultural Disability Studies (JLCDS) and have announced a call for papers!

Special issue: Chronic Illness and Representation
Guest editors: Ana Bê (Liverpool Hope University) and Emma Sheppard (City, University of London)

This special issue of the Journal of Literary and Cultural Disability Studies will consider the representation of chronic illness.

Disability studies has for a number of years engaged closely with understanding chronic illness as a category of impairment (Thomas, 2008). Significant early contributions have been made by authors such as Carol Thomas and Susan Wendell and books such as Dissonant Disabilities: Women with Chronic Illnesses Explore Their Lives (2008). It is also important to recognize the relevance of more recent contributions such as those of Alyson Patsavas and Mel Chen in the context of cripistemologies (2014), as well as those offered by Alison Kafer in problematizing the role of pain and fatigue (2013), and Hillary Gravendyk’s concept of ‘chronic poetics’ (2014).

There has been increasing discussion, representation, and awareness of chronic illness in recent years – as part of, and distinct from, disability. Celebrities and public figures such as Lady Gaga have candidly discussed their experiences of chronic illness and been open about the obstacles they have faced, while Jennifer Brea’s documentary Unrest (2017) ignited further discussion. Bitch magazine’s In Sickness series (2017) presented complex and intersectional analysis of chronic illness and feminism. Social media has helped develop a culture of activism around chronic illness, from support groups to activist pages and the creation of memes. Recent films, such as Love and Other Drugs and The Big Sick, have provided audiences with popular representations of chronic illness.

However, there remains a substantial gap in this part of the field of disability studies, and we would like to make a start on filling it by inviting contributions that focus on cultural representations of chronic illness in a range of different cultural mediums–from literature to film, to TV and social media. We aim to take stock of how representations of chronic illness might have developed and what these are telling us about how we understand this experience.

Chronic illnesses are sometimes also designated as long-term health conditions or chronic diseases. For the purposes of this issue, we use the term chronic illness as it tends to resonate in activist circles. Our understanding of chronic illness is underpinned by Susan Wendell’s definition: ‘Usually, they [chronic illnesses] are understood to be illnesses that do not go away by themselves within six months, that cannot reliably be cured, and that will not kill the patient any time soon’ (Wendell 1996:20). Within this definition, we include experiences of undocumented illness (Mollow, 2014)–illnesses that have no recognised or agreed upon classification, whose cause is debated, and the experience of which is often dismissed. Therefore, the definition is quite open, and fits a wide range of experiences, but we emphasize that our understanding of chronic illness is also based on a shared disability studies politics that sees this experience as being framed by both social oppression and impairment effects.

Possible topics for papers include, but are not limited to:

● Documentary film
● Fictions and stories of chronic illness
● Social media representations and cultures of chronic illness
● Intersections of race, gender, sexuality and chronic illness
● Chronic illness and celebrity
● Cripping and queering chronic illness
● Crip time and chronic illness
● Representations of chronic illness in art
● Global perspectives on cultures of chronic illness
● Masculinities and chronic illness
● Cripistemologies of chronic illness
● Historical perspectives on chronic illness
● Activism and cultural representations
● Theater, performance and chronic illness
● Poetry and chronic illness
● Representations of chronic pain and fatigue
● Music and chronic illness

Timetable:

15th April, 2019: submission of a 500-word proposal for articles or a 150-word proposal for reviews and a short bio (150 words) to both the guest editors Ana Bê (pereira@hope.ac.uk) and Emma Sheppard (Emma.Sheppard@city.ac.uk).

28th June, 2019: prospective authors notified of proposal status.

1st December, 2020: Full versions of selected papers due to editors.

June, 2020: Finalists selected. Decisions and revisions on submissions sent to authors.

September, 2020: Final, revised papers due.

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Call for papers! SHU Humanities Post-Graduate Conference

Call for papers is open until 1st April 2019

Conference will take place at Sheffield Hallam University, on May 31st 2019

More information available here and below: https://postgradgroupshu.wordpress.com/call-for-papers/

Details: Inter-disciplinary conference with the theme of Invisibility

Potential approaches to Invisibility and Absence may include:

• Absent voices in political discourses, and how those voices are silenced.
• Power relationships predicated upon the absence of voice of some of the participants.
• The gaining of voice; making oneself visible.
• The ontological status of the ‘invisible’.
• Narratives of those who have been traditionally under-represented or oppressed: women, trans, minority narratives.
• The ‘unseen’ consequences of political discourses on those without voice.
• Agency and visibility.
• Age and invisibility.
• Social media and presence.
• The experience of being ‘invisible’ within discourse and its consequences.
• Disempowerment relating to absence.

The conference is aimed at giving masters, PhD students and early career researchers the opportunity to have their ideas heard in a supportive environment. It has been run for three years and is a great opportunity to gain experience of a conference, practise delivering a conference paper or to network with others.

The conference isn’t limited to Sheffield Hallam University, there will be a key note from Manchester and 5 abstracts from universities all over England have been received so far.

If you wish to submit your abstract please email it to: invisibilityconferenceshu@gmail.com and should include a 250 word abstract and a short biography.

 

Friday 22nd February

Time: 10am – 12pm.

Place: 12.02.20 Charles Street Building, Sheffield Hallam University. City Campus

This is on the second floor of the Charles Street Building which is just next to Arundel where we held meetings last year.

Speaker 1: Louise Logan-Smith

Title: ‘The Giant Hotspot’: Museums, Medicine, Literature and the Cultural Afterlife of Charles Byrne

Abstract:

The Hunterian Museum’s acquisition and display of the human remains of the eighteenth-century ‘giant’ Charles Byrne have been embroiled in ethical debates surrounding the competing claims to and contested ownership of the body. In June 2018, it was announced that the museum would be removing Byrne’s remains from display during a refurbishment period of three years, during which time they would ‘consider’ the possible repatriation and burial of his bones. This present example of the contentious legacy of remains in museums raises issues concerning the ethics involved in collection and display, but it also brings to light the ways in which historical collections are ethically embroiled in disability politics. Focusing on disability and museum discourse, as well as literary and textual analysis, this paper interrogates the extent to which interdisciplinary narratives can insight a “cultural redress” (Snyder, Brueggemann, Garland-Thomson, 2002) of disability representation and the cultural afterlife of the ‘freak show’ in museums.

Speaker 2: Maram Alwadi

Title: The Inclusion of Disabled Children in Oral Health Research

Abstract:

Despite the fact that current policies encourage the involvement of disabled children in decision- making and research about matters that affect their lives (UNICEF, 1989), whilst the educational, sociological and nursing research have made progress towards inclusion, disabled children have been less commonly included in oral health research. The importance of listening to children, including disabled children, is well supported in policy as well as in literature (Sinclair and Franklin, 2000; Willow, 2002).

Within the field of oral health research, two valuable systematic reviews have been conducted to show how far dental research has been done with or on children. The first systematic review found that the majority of research (87%) of papers viewed children as the ‘objects’ on which to do research on, rather than with (Marshman et al., 2007). An updated systematic review identified that the proportion of research on children had decreased by 23% over that decade and moved more towards research with children rather than on them (Marshman et al., 2015). What neither systematic review does is identify whether disabled children are viewed as a diverse group and if they are included in oral health research. Therefore, my PhD research has two aims which are to:

• Review the literature on the inclusion of disabled children in oral health research (Study1)
• Explore the oral health views and experiences of disabled children, their formal and informal carers and service providers (Study 2)

The systematic review of the current literature on the place of disabled children in oral health research, revealed that most oral health research is conducted on disabled children. Unlike previous systematic reviews of inclusion of the voices of children in oral health research (Marshman et al, 2007; Marshman et al, 2015), disabled children were mostly excluded from research. This suggests that there is a need for research that attempts to use methods, which include disabled children as fully as possible to ensure that their perspectives are obtained, and their voices are heard.

Therefore, the second study aims to enable the voice of disabled children to be heard in oral health research through exploring their perspectives of oral health and oral health services. Meanwhile, the views of mothers, as the significant adult in children’s home life, their service providers and teachers as the significant adults in the children’s life will be sought to triangulate with and support the children’s perspectives. The current study is significant since the voices of disabled children appear to be mostly excluded from oral health research. This has an impact on service provision and policy to identify areas for improvements in oral health services and oral health promotion initiatives.

Note: The presentation will present the systematic review of the current literature on the place of disabled children in oral health research. It will also present an overview for the study two which aims to explore the oral health views and experiences of disabled children, their formal and informal carers and service providers.

New Directions in Critical Disability Studies – postgraduate symposium

A postgraduate symposium aiming to share exciting new ideas in disability studies, and think critically about what it means to be human.

July 9th. 10am – 4pm

About this Event

This one-day symposium invites postgraduate researchers to engage with some of these questions as they relate to their own research projects. The day offers the exciting possibility of learning with and from one another to think about the different directions that are now being taken within critical disability studies. Each speaker will offer a unique contribution to the day, drawing upon the theoretical and methodological frameworks of their PhD project. The call for papers is intentionally broad in order to provide an open and flexible space for these new directions to be debated and discussed. While broad, presenters are brought together through their interest in both developing, and initiating, new directions in critical disability studies. We hope to meet with postgraduate researchers from a range of institutions and seek to explore the following questions:

What does it mean to be human?

What does it mean to be pushed to the peripheries of its borders?

How might we confront these borders and rethink the dominant territory of the ‘normal’ human?

How, as a collective of postgraduate researchers, can we have honest and open conversations about what the human is, isn’t, and could be?

We welcome proposals from postgraduate researchers who position their work within the field of CDS. We are interested in exploring some of the new directions you are taking this field within the unique parameters of your PhD topic. Abstracts should be between 150 and 200 words.

Please send your abstract, and brief bio, to newdirectionscds@gmail.com on or before Wednesday 13th March, 2019. We aim to respond to you by Monday 15th April with our decisions.

The symposium will take place in Workroom 4, on the first floor of 38 Mappin Street, University of Sheffield, S1 4DT. This space has access to accessible toilet facilities, gender-neutral toilets, car-parking, and with level access into the building. The building does not play background music. Lift access is available next to workroom 4.

More info on accessibility has been created by Disabled Go https://www.accessable.co.uk/venues/38-mappin-street

An interactive map of the building is available following this link http://ssid.sheffield.ac.uk/38-mappin-floor-plan/

This is a free event and lunch and light refreshments will be provided.

If you have any questions, please feel free to get in touch with us newdirectionscds@gmail.com

More information can be found on the link below:

http://newdirectionscds.home.blog

#NDCDS

Call for a speaker!

We are currently looking for one more speaker for our February 22nd session 10am-12noon at Sheffield Hallam University.

If you are an early career researcher or a Masters/PhD student and would be interested in speaking about any disability related topic please check out this page for access information and this page for presentation guidelines and then contact me at s.r.hannam-swain@shu.ac.uk

We are an informal network of disability scholars who provide researchers with opportunities to present their work in a friendly and encouraging environment.

Thanks!

Steph

Welcoming in the New Year with two amazing speakers!

Tuesday, 29th January 2019

Time: 2pm – 4pm.

Place: 12.02.19 Charles Street Building, Sheffield Hallam University. City Campus

This is on the second floor of the Charles Street Building which is just next to Arundel where we held meetings last year.

Speaker 1: Esme Cleall

Title: History as a tool of public engagement: disability, identity and the past

Abstract:

In 2017 I worked with Sheffield Voices, a self-advocacy group of adults with learning disabilities, and Sandra Thomas, a film-maker, to make a short film about the history of disability in Sheffield, where we all live.

The film documented the discussions we had about history: What did we mean when we spoke about the ‘past’? What did it mean to be disabled when our parents and grandparents were young? Could history teach us about the roots of the hate-crime which so many of the group experienced? It also provided an opportunity to discuss some of the challenges members of the group faced today such as cuts to public funding.

These were difficult discussions to have. They involved exploring negative words  that were used in the past to mean someone with a learning disability – ‘idiot’, ‘moron’, ‘imbecile’. And they meant presenting information that made members of the group sad and angry.

In this session I will show the 15-minute film (subtitled) that we produced. I will follow it by a 10-15-minute paper which reflects on the ethics of me, as an academic who does not have a learning disability, in working this group who have consistently been excluded from academia. I also reflect on the extent to which the film was coproduced? And think about what is the role of history and the past in thinking about and engaging in disability activism today?

Speaker 2: Shona Davison

Title: Pros and cons of autistic parenthood

Abstract:There is a dearth of research on autistic parenthood. Parenting increases engagement with services such as healthcare and education, which means that autistic parents are forced to engage with services that do not understand them or their needs. This study uses case studies and thematic analysis. Six autistic parents were interviewed about the pros and cons of being an autistic parent. This resulted in four themes: autistic characteristics, relationships, indirect effects of autism and stress. An important finding was that all participants reported negative relationships with professionals and three participants were fearful of losing their child(ren). One parent was falsely accused of fabricated and induced illness, which led to a lengthy traumatic investigation. The findings are discussed with recommendations for future research.

DRF Session 2

Hi Everyone!

Our second Disability Research Forum is going to be on Thursday 6th Dec, at 11am – 1pm. The session will be held in the Charles Street Building (next to Arundel) again room 12.03.16 – which is on the third floor. Please do get in touch if you have any accessibility needs or questions.

We have two more wonderful speakers:

Speaker 1: Julia Bahner

Title: Sexual citizenship in practice: diverse opportunities for support

Abstract:

Disabled people’s sexuality is a neglected subject in disability services, health care, within the disabled people’s movement, and in society as a whole. Inaccessibility and failure by professionals to recognise disabled people as sexual can lead to unmet needs, misconduct and reproduction of prejudice about asexuality. This paper will explore what ‘sexual citizenship’ means in practice for people with mobility impairments who may need professional support to conduct their sexual activity as desired, i.e. sexual facilitation. Through a cross-national approach the paper demonstrates the variability of how sexual rights are understood and their culturally-specific nature. It also shows how the personal is indeed political: states’ different policy approaches change the outcomes for disabled people in terms of support to explore and express their sexualities. A critical analysis of disability policies as well as sexual health policies reveals how the sexual needs of people with mobility impairments are often ignored. Furthermore, disability organisations’ different approaches to advocating for sexual rights highlights how some of them inadvertently adapt to what is deemed as ‘policy-relevant’ and how sexual rights are often less a priority than other rights – especially in times of austerity. So, is sexuality merely a luxury or is it an inherent part of being human? Do service users have a right to sexual pleasure, and if so, how is this to be catered to in practice, and if not, on what grounds do non-disabled people in power positions define disabled people’s sexual lives?

Speaker 2: Thomas Price

Title: “Officially Described as Mysterious”: New Directions in Demystifying Autism

Abstract:

Autism and communication are almost invariably linked; consequently autism is frequently defined in relation to communication. My research aims to provide an exposition of how our understanding of autism, is limited by our understanding of communication.

My research draws on the works of Roy Harris, in order to expose the underlying communicative assumptions that have been made in previous autism research. Such assumptions include: that verbal communication should take precedent; that the researcher is a social “scientist” and that autistic communication is deficient.

Harris’ work, while considered radical in the field of linguistics, offers a unique opportunity to the linguist who is researching autism. In order to demonstrate this, I outline how the Harrisian epistemology can lead to a more participatory, linguistic approach. Too often linguists impose their own perceptions on autistic communicative behaviour. My proposed methodology traverses this flaw, instead championing the autistic voice and the autistic perspective.

It is my goal to pave the way for linguistics to join the emergent wave of participatory research. Our understanding of autistic communication can only be furthered through a combination of lived experience and research experience.

DRF Session 1

Hello Everyone!

I am please to announce our first DRF session of the academic year. Hope to see you there! Details are as follows:

Wednesday, 14th November.

Time: 11am – 1pm.

Place: 12.02.05 Charles Street Building, Sheffield Hallam University. City Campus

This is on the second floor of the Charles Street Building which is just next to Arundel where we held meetings last year.

Speaker 1: Katharine Terrell

PhD Student Sheffield Hallam University

Title: Disabled children and embodiment

Abstract:

I will be exploring some of the key issues around how we conceptualise children’s embodiment, with a focus on children that are labelled as disabled, having an impairment, or having Special Educational Needs. Firstly, I will consider the meaning of embodiment; the importance of studying embodied experiences; and how bodies interact with, and co-create, space. I will explore some of the ways in which children’s embodiment has been neglected or overlooked in academic work, and consider the ways in which we might be able to study disabled children’s embodiment without returning to pathologising, disempowering accounts of disabled children’s experiences. Such disempowering accounts include adults’ concerns that children’s bodies “develop” in a way that is normative and reflective of expectations that children will become “productive” adults, which is reflected, for example, in the way classroom spaces are designed.

In the second part of this presentation, I will build on this theoretical background to place my PhD project into context and introduce some key emerging themes. I will introduce my methodology, which involved interacting with children aged 5 to 7 in a northern English primary school to understand their embodied experiences and their use of school spaces. As part of this, I will explore some of the theoretical and practical problems of trying to enter children’s worlds as an adult. Then I will take the audience through some of the data—photographs, drawings and field-notes—and discuss what these data might tell us about how children’s bodies act in space, create spaces and resist power dynamics enacted through space.

Speaker 2: Steve Graby

PhD Student University of Leeds

Title: “It would be nice if you didn’t have to jump through hoops”: barriers to the realisation of personal assistance as a means to independent living for disabled people in the UK

Abstract:

The direct employment of personal assistants (PAs) by disabled people has been a part of the landscape of social services in the UK since the 1980s, and was established on a national level by the Community Care (Direct Payments) Act in 1996. It was originally envisaged by the Disabled People’s Movement (DPM) in the UK as an essential component of an emancipatory strategy for achieving ‘independent living’, in which ‘independence’ is reconceptualised as decisional autonomy and self-determination in everyday life. However, the use of a form of waged employment as a tool for liberation presents a potential contradiction with the analysis by founding theorists of the DPM of capitalism and its labour relations as the basis of disabled people’s oppression.

In my doctoral research I conducted semi-structured qualitative interviews with current and former PAs and disabled people who employ(ed) PAs, intending to investigate contradictions within and potential alternatives to the direct employment model of personal assistance. However, participants found alternative possibilities hard to discuss because barriers to the implementation of this model have arguably meant that its emancipatory potential has never been fully realised. In this paper I present data from these interviews which reveals the effect of these barriers on the everyday lives of disabled people with personal assistance needs and on the personal assistance relationship. I then discuss suggestions made by PAs and employers for changes in policy and practice that could help to overcome these barriers and fully realise the original vision of personal assistance, and conclude by examining some tensions that may remain even after its realisation.

Cancelled – Session 19th October

We are sorry to announce that due to speaker availability the DRF session scheduled for October 19th has been cancelled.

We are expecting to go ahead with the session on November 14th and details of this will be published soon.

Best wishes,

Steph and Rebecca.

Autism Dialogue Conference 2018 Tickets, Fri, 14 Dec 2018

Get your ticket here: https://www.eventbrite.co.uk/e/autism-dialogue-conference-2018-tickets-48731301635

This full day conference and workshop is a celebration and consolidation of eighteen months practice in this new field, with around fifty participants, in various settings.

Tickets are just £25 for the full day and all students can get a 20% discount using the code STUDENT20 at checkout.

The conference is an invitations to join us in celebrating the launch in Sep 2017 and continuing work, as well as learn about the benefits for autistic people and the autism community and hear about the launch of a national network.  You will hear talks from numerous autistic delegates, (some of whom have been participating for over a year), researchers, therapists and a keynote from co-founder of the Academy of Professional Dialogue, Jane Ball.  You can take part in interactive sessions and network with key professionals from all areas.

We had a successful introductory dialogue session SHARP members and others in July and it was unanimously felt the methodology would be very useful for Autism researchers, especially undertaking PhD’s.   Whilst I still have two years to go on my MA Autism, I have been forming a research proposal for my own PhD with Autism Dialogue at the centre, partly inspired by the new Critical Arts in Health group at SHU’s Lab4Living and Design4Health.

Next week my paper ‘Autism Dialogue’ is being published and used to inform a session at the inaugural International Conference of Professional Dialogue.  This is the first time the Bohm Dialogue method has been applied in the field of Autism.  I am also presenting a poster at Scottish Autism in November.

I hope you will support me in making the Sheffield conference a success by coming along and inviting colleagues and friends.

Many thanks and hope to see you there.

Best wishes,

Jonny Drury
AUTISM DIALOGUE
Communicating Autism through Participatory Dialogue
www.autismdialogue.org

Get your ticket here: https://www.eventbrite.co.uk/e/autism-dialogue-conference-2018-tickets-48731301635