Book Review (Pollitt): ‘Disclosures: Rewriting the Narrative about HIV’, ed. Spoto

Book: Disclosures: Rewriting the Narrative about HIV, edited by Angie Spoto (Scotland: Stewed Rhubarb Press, 2018). (96 pp). £10.99. ISBN: 987-1-910416-10-5

Reviewer: Beverley Pollitt, Liverpool Hope University

Stigma. A highly prevalent concept many of us are familiar with and one which is indisputably associated with HIV. Disclosures: Rewriting the Narrative about HIV is constructed as an informative anthology, offering an enlightening insight into the diverse community who experience this stigma and consequential isolation first-hand. The collective challenges the stigma and common (mis)perceptions of living with HIV by upholding the power and importance of personal narratives. These narratives, belonging directly to those touched by HIV, deliver an open and honest insight into the reality of living with the condition whilst simultaneously offering an alternative understanding which disputes society’s ingrained notion of HIV. Disclosures advocates these narratives as a means of creative activism, an activism which it does undeniably well.

When HIV first arose, a lack of education within society was apparent. Many carried the damaging (mis)conception it was a killer disease contracted through ‘dirty’ behaviour. Society treated those who were diagnosed as ‘lepers’ and who were to be avoided at all costs. This landscape is now vastly different, society has evolved, education surrounding HIV has improved and this steadfast attitude contested. However, the stalwart stigma associated with HIV has been so profoundly ingrained within the core of society, more work still needs to be done. Although medical developments and interventions have contributed widely to lived experiences, an attitudinal gulf between HIV and the ‘norm’ is still at large. It is at this crucial point where Disclosures and its poignant ethos successfully emerges. It comes at a time when other marginalised groups and disabled people are revolting against the autocratic effects of hostile stigmas whilst advocating for self-empowerment and liberation. By providing a platform, Disclosures allows those with HIV the opportunity for their voices to be heard and to join this revolution.

The narratives contained within Disclosures emanate from a vastly intersectional and diverse collective, touching on the lives of men, women, transsexuals, homosexuals, heterosexuals, young, old and even nuns. The singular commonality between the collective (besides HIV) is they all reside in Scotland and as such, have personal experience of Scottish HIV services and facilities. Furthermore, the collection draws on a captivating variety of contributions including poetry, imagery and protagonist narratives, all of which rewrite the narrative of HIV by providing unique, personal insights contesting society’s entrenched stigmas. Recitals from friends and families are also included, contributing to a deeper dimension of awareness. Each piece of work is delicately interwoven, creating a powerful yet emotive anthology which enriches the understanding of HIV from multiple perspectives.

By including an extensive array of material and views editor Angie Spoto has ensured she has been successful in disputing the pervasive historic opinion that HIV affects “only gay men or drug users” (p.vii). Spoto joined HIV Scotland, a leading policy organisation, as their artist in residence with the view of reshaping the narrative through storytelling and thus, the collection was born. She has strategically designed Disclosures so it is periodically punctuated with information relating to the key areas of public policy for which HIV Scotland advocate. This arrangement draws attention to significant areas of development whilst shrewdly revealing those with HIV encounter troublesome barriers extending beyond attitudinal stigmas.

A common theme appearing within the contributions is the influence/dominance of medical interventions. This extends to a gaze which deems those with HIV as objects of curiosity who now belong to the sciences. NJ Millar so poignantly captures this in “Jormungandr”,stating “I do feel like a lab rat in a trap” (p.5), a sentiment in her prose which would evoke empathy from even the most hardened reader. Meanwhile Michael Nugent, in “It Couldn’t be Me”, recounts speaking with a doctor: “Wait a fucking minute here, doc. This is my life”; the implication is that once diagnosis occurs, people are stripped of their humanity with their bodies becoming medical specimens. Whilst there is a requirement for medication to render the virus undetectable, these accounts give further gravitas as to why the prehistoric stigmas of HIV need to be rewritten.

Another unmistakable tenet of the collection is the way it sensitively approaches the stigma associated with sexual deviance and promiscuity. Interlaced between the varying accounts is the impassioned offering “Texan Condoms”in which Kevin Crowe subtly tackles the taboo of homosexuality and promiscuous sex. Crowe’s prose draws not only on his experience of supporting a friend with the diagnosis but is also reminiscent of the awareness of HIV as a sexually transmitted infection within the gay community. RJ Arkhipov’s account “afterwards atop the bedsheets” considers post-coital euphoria and uses the intimate image of entwinement within the bedcovers as a metaphor for a shroud, generating a stark reality of the sinister tombstone HIV represents to many. James Stewart’s poem “Our First breath is In”, quite simply likens the sexual transmission of HIV as being as innocent and natural as breathing in and out. A tender comparison which reminds the reader we are all at risk of HIV, regardless of sexual preference. In contrast to this gentle offering, Stephen Duffy’s hard-hitting piece “Play it Again, SAM” takes the reader on an emotional journey considering the everlasting effects of rape which emerge long after the physical scars have healed. The collection navigates its way round this controversial but complex topic with sophistication and elegance; for this it must be applauded.

Whilst Disclosures successfully offers the reader a moving alternative to the archaic understanding of HIV through protagonist narratives, it also effectively highlights the lack of service and support available post-diagnosis. Michael Nugent’s “It Couldn’t be Me”recounts the start of his diagnostic journey and having to fight to see a doctor, then how following diagnosis he was left in a state of uncertain limbo pending specialist appointments. He recalls being handed leaflets as a source of information, an impersonal approach at a point in time where people require human interaction for emotional guidance and support. This recital is evidence of the unjust support service available in Scotland leaving the reader to question the services available throughout the United Kingdom and beyond. Disclosures takes the reader on a subconsciously emotional journey, culminating in anger at the lack of services and support which should be available at an undoubtedly turbulent time. Feelings of empathy are evoked throughout the entire anthology, but it is during this story the political implications of HIV become apparent. People with HIV require a higher level of support owing to the hostile and unfavourable stigma associated with the condition, a support which Disclosures uncomfortablyreveals they are being denied. This emotional rollercoaster gives only a snippet into the lived reality of HIV, yet it is enough to make the reader reconsider the archaic, damaging HIV narrative which is still rooted within contemporary society. This therefore renders Disclosures a further success.

Matthew Lynch draws attention to HIV and mental health in his unique offering. Lynch’s piece is a stimulating singular image, noticeably the only image contained within the collection (aside from accompanying artwork) and remains untitled. His representation movingly depicts a darkly coloured head silhouette set against a dull grey backdrop where colourful medication can be seen travelling down the oesophagus. Most strikingly, the image illustrates a maze of scribbles and chaotic lines representing the brain and is successful in its aim of drawing the reader’s attention to HIV and mental health. The image is a passionate reminder of the dark places encountered on a journey with HIV, a journey which would unquestionably be affected by negative stigmatisations. Whilst the impact of the anthology would have benefited from the inclusion of several more images and depictions, Lynch’s contribution effectively encompasses a multitude of salient concepts and one which indisputably challenges the readers’ present understanding. Moreover, he effectively refutes dominant narratives of HIV by using his powerful inimitable portrayal to present a lived experience which serves to rewrite the narrative of HIV and justifies why Disclosures is an essential contribution to this process.

The collection is a valuable influence in the understanding of HIV. In order to develop the aim and ethos of Disclosures further, it would benefit by extending to include narratives from other geographical locations. Whilst the book focuses solely on the services and experiences of the Scottish demographic, it provides an honest, valuable insight regardless of geographical location. These experiences are only a snapshot yet can be understood to be representative of the entire HIV community. The book is effective in reaching this segregated community who may pick it up out of curiosity and a sense of solidarity alongside being appealing to the general public. It is compiled and written in a manner accessible by many, promoting an ease of understanding and by doing so, widens its intended audience to encompass all areas of society. This deliberate methodology allows Disclosures to capitalise on its maximum audience potential thus ensuring HIV stigma is contested on a widespread basis. The greater the access to the anthology, the greater in its success Disclosures will be.

There is a noticeable respect for the experiences detailed, an admiration which the contributors rightly deserve for their honesty and willingness to share their stories, and for this, Angie Spoto must be commended. Disclosures must be cherished as an alternative form of education which focuses on exploring the lived reality of HIV rather than how it can be contracted, contained and medicated. This alternative education enlightens others by providing captivating replacements to the inherent understanding of HIV and serves to remove the stalwart stigma surrounding HIV effectively. It is my contention this anthology has been successful in its determined aim, it is highly enjoyable and everyone should buy a copy!  

CFP: Special Issue of C21, ‘Surveilling the Body: Ableism and Anglophone Literature’

C21 Call for Papers

Special Issue: “Surveilling the Body: Ableism and Anglophone Literature”

Guest edited by Dr Susan Flynn and Dr Antonia Mackay

Deadline for articles: 1st May 2019

Surveillance Studies has made a substantial contribution to interrogations of human rights offences by helping to document instances of discrimination in recent times. Indeed, examinations of the ‘culture’ of surveillance have been useful in examining the myriad occasions of human rights offences in issues such as race (Browne 2012; Flynn and Mackay 2018), yet surveillance practices via literature, especially those associated with the discourse of ableism, have been largely ignored. This special issue aims to initiate new discussions of ableism in the discourses of surveillance through literature and engage with the issues of the non-normate body, particularly as surveillance uses the normalizing technologies of power to monitor, control and regulate behaviours and mobilities of certain bodies.

In contemporary literature, the forms of agency and subjectivity available to those who are outside the hegemonic ‘norm’ are often limited; literature is most often written with a mainstream readership in mind and thus can be read as deeply ‘ableist’. Interrogating instances of ableism in characterisation and in narrative arcs calls for an examination of how (unearned) privilege attaches to those who can conform to the supposed norm. Such a lens interrogates the status quo as opposed to seeking the ‘inclusion’ of persons with disabilities within extant social structures. This special issue is particularly concerned with twenty-first century writing and its complex relationship both with surveillance and with representations of disability. We are aware of the tendency for dominant groups to project their own experiences as representative of all humanity thereby excluding other groups – we hope to preclude this by providing a broad range of readings and approaches from a diverse authorship. We are interested in readings of new texts which engage with the surveillance of disability or with radical readings of texts dealing with either intellectual, physical or acquired disability.

Papers might include topics such as:

  • The role of surveillance in (dis)abling bodies in contemporary fiction, poetry, short stories and drama
  • The complexity of the representation of the corporeal body in Twenty-First Century Anglophone writings
  • The manner in which surveillance can affect the marginalisation of groups of peoples in Anglophone literary discourse
  • The hypervisibility of the body with disability in poetry, drama and written narratives
  • Representations of surveilled spaces which impact upon the able and disabled characterisation of identity from within contemporary settings
  • Consideration of how the lens contributes to definitions of types of bodies in Anglophone writings
  • Hypertextual readings of contemporary literature which contribute to the enabling of otherwise marginalised bodily movement through narratoglical means
  • The impact of gender/race/sexuality on surveilling the body
  • The implications of ableist forms of surveillance in literature in our contemporary political climate
  • Digital storytelling and the visibility of disability rights and culture
  • Digital platforms as a means to re-vision the body with disability

Articles of 6000 – 8000 words along with a short bio (150 words) should be sent to Dr Susan Flynn (s.flynn@lcc.arts.ac.uk) and Dr Antonia Mackay (antoniamackay@brookes.ac.uk) by 1st May 2019.

CFP: Special Issue of JLCDS, ‘Learning Difficulties: Histories and Cultures’

Journal of Literary and Cultural Disability Studies

Special issue: Learning Difficulties: Histories and Cultures

Guest editors: Owen Barden and Tina Cook

Deadline for abstracts: 5th April 2019

Until the late 20th century, intellectual disability history was subsumed or neglected within accounts from the psycho-medical professions, educational and mental health services, sociologists, and historians. More recently, input from a broad range of disciplines has helped to challenge the assumed truths generated about learning difficulties generated by medics, scientists, and medical historians.  Learning difficulties have also emerged as a field of inquiry in their own right within disability studies, following recognition that this aspect of disability has frequently been overlooked in both the initial turn to the social model and the subsequent re-turn to impairment. The overall objective of this special issue will be to make a significant contribution to this growing field of interdisciplinary and emancipatory research about learning difficulties.

Disabled people generally, and people labelled with learning difficulties specifically, have often been excluded not only from research but from culture and history more broadly. This has made people labelled with learning difficulties almost invisible. Where representations do exist, they are often skewed by the label and tropes of learning difficulties. We seek contributions evidencing the generation of new knowledge about learning difficulties and their histories, and which bring a variety of perspectives to bear not only on historical material and accounts, but also on the lived experience of learning difficulties today. 

We encourage histories which foreground the role of culture, and the impact people labelled with learning disabilities have had on culture, rather than medicalized accounts. A cultural approach to history addresses the discursive practices and formations surrounding learning difficulties; it is concerned with the way people said to have learning difficulties are conceptualized, spoken about, and interacted with, and with the relational and environmental factors contextualizing and shaping these practices and formations. We welcome both histories of lives of people labelled with learning difficulties and historical analyses of cultural representations of learning difficulties.

Possible topics might include:

  • Representations of learning difficulties in historico-cultural artefacts.
  • Explorations of identity and intersectionality in relation to learning difficulties.
  • Analyses of the cultural work done by the organizing concept of learning difficulties.
  • Cultural histories, including ‘histories of the present’, which reveal important yet hidden aspects of contemporary experience.
  • Local, personal and insider histories, knowledges and perspectives.

Timetable:

5th April 2019: submission of a 500-word proposal for articles or a 150-word proposal for reviews and a short bio to the guest editors Owen Barden bardeno@hope.ac.uk and Tina Cook cookt@hope.ac.uk.

3rd May 2019: prospective authors notified of proposal status.

30th Nov 2020: Full versions of selected papers due to editors.

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

August 2020: Final revised papers due.

CFP: ‘Chronicity and Crisis: Time in the Medical Humanities’, Montclair NJ

Location: Montclair State University, New Jersey, USA

Date: 26th – 27th October 2019

An International Conference co-sponsored by the Montclair State University Medical Humanities Program and the Waiting Times Research Group (a Wellcome Trust funded research project based at the Universities of Exeter and Birbeck, London, UK)

Keynote Speakers:

Dr. Mark Solms   Chair, Neuropsychology, University of Cape Town & Groote Schuur Hospital  
Title: “A Man Who Got Lost in Time:  Feeling and Uncertainty in the Face of Oblivion”

Dr. Rishi Goyal   Director, Medicine, Literature and Society Program, Columbia University
Title: “Crisis, Catastrophe and Emergency: Disentangling Temporal Patterns of Care and Response”

Those with interests in general practice, psychotherapy, disability studies, palliative care, end-of-life care, narrative medicine, public health, medical anthropology, medical history, literature and medicine and body studies, and researchers addressing questions of care and temporality within fields such as philosophy, sociology, psychology, critical and cultural studies, gender studies and Black studies are most welcome.

Possible paper and panel topics include:

  • waiting time
  • access and discrimination
  • trauma and urgency
  • suspense and disease in mass media
  • representations of chronic illnesses in art, literature, and film
  • narrative time in medical fiction and nonfiction
  • theories of crisis and chronicity
  • theories of rupture and endurance
  • the temporalities of psychic life

Abstract submissions to be sent to Dr. Jefferson Gatrall by 1st April 2019, at gatrallj@montclair.edu

Organizing committee: