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!  

Call for Reviewer: ‘Disclosures: Rewriting the Narrative about HIV’ (2018)

Reviewer wanted for Disclosures: Rewriting the Narrative About HIV (Stewed Rhubarb, 2018). If you are interested in reviewing this book, please email Hannah at hannah.tweed@york.ac.uk, with a brief bio and why you are interested in reviewing the collection. Further details below:

Disclosures: Rewriting the Narrative About HIV, ed. by Angie Spoto

Being HIV positive today is completely different from how it was thirty years ago. This anthology collects work from those affected by HIV so they can tell us what it really means to have HIV in Scotland today.

Many of the stories, poems and artworks here emerged from the Positive Stories workshop series and artistic-mentorship scheme organised by HIV Scotland, empowering people to use their own voices to reshape the narrative around HIV and take part in creative activism.

Disclosures features a forward by Jackie Kay and illustrations by Brian Houston, as well as poems, short stories, and art from:

  • RJ Arkhipov
  • Mark Carlise
  • Kevin Crowe
  • Will Dalgleish
  • Stephen Duffy
  • J. William James
  • Matthew Lynch
  • James McAbraham
  • NJ Millar
  • Nobody
  • Michael Nugent
  • Oliver
  • Rio
  • Fraser Serle
  • Nathan Sparling
  • Angie Spoto
  • Jamie Stewart

Available to buy from Stewed Rhubarb. Please note – preorders will be posted on Monday 26th November 2018.

Book Review: ‘Reading the Psychosomatic in Medical and Popular Culture’, ed. Carol-Ann Farkas (2018)

Book Review: Reading the Psychosomatic in Medical and Popular Culture, edited by Carol-Ann Farkas (London and New York: Routledge, 2018).

Dr Cris Sarg, University of Glasgow

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Reading the Psychosomatic in Medical and Popular Culture (2018) is an edited  collection by Carol-Ann Farkas. As is evident from the title this book examines the perceptions/interpretations of the psychosomatic within both medical and lay culture. The essays ‘seek to understand what the psychosomatic does, what uses we put it to, and what work it does for us: medically, socially, and culturally’ (Farkas, 2018, p.2). These essays both complicate and expand the readers understanding of the psychosomatic. This is because the authors do not merely simplify or define the topic but instead examine and explore it from within via multiple disciplinary perspectives, such as the clinical, historical, sociological, textual and cultural.

The first three essays examine the psychosomatic within clinical encounters. Caryn Rubanovich’s essay examines the conflict between clinicians and patients that is the result of the Western construct of biomedicine bringing those that exhibit psychosomatic symptoms into conflict with medical providers in order to gain the status that a definitive diagnosis confers upon them. The second essay by Maria Guilia Marini et al. provides a direct clinical example of the conflict between clinicians and patients affected by syndromes that have historically fallen under the heading of psychosomatic. They examine disease/care narratives compiled by both clinicians and patients who are dealing with fibromyalgia. The premise is that both patients and clinicians can learn from each other via the journals that both groups kept with the eventual hope of improving both the patient and clinician experience within this encounter. Finally, Claire Hooker and Louise Stone’s essay examines the conflict between patients and clinicians when clinicians insist that nothing is wrong, and proceeds to highlight the influence of the wider cultural and social milieu in shaping what we know and how we experience ill health.

Jessica Parr’s essay shifts the conversation from the clinical towards the historical and cultural and looks at the history of emotional eating in America during the twentieth century. She highlights the disconnect in the popular and medical/scientific understandings of excess weight and how twentieth century advancements in research into physiology and metabolism did not have nearly the same level of popular impact when compared to the models that explain overweight individuals that were provided via the psychological and psychoanalytic. These models assume that the act of overeating as a psychosomatic manifestation for unresolved problems of identity and emotion. ‘[T]his idea reinforces social stigmas and continues to endorse a construction of the self that values the belief that the fat body can be understood and regulated through a mind-body framework’ (Parr, 2018, p.66). Further, Amba Sepie’s essay expands on the idea that only certain ideas and theories have social legitimacy over others. Sepie posits that biomedical practices have had a colonizing effect on discourses of “health” and “illness” and have therefore privileged those discourses that have their roots in the “Western” and “scientific”. Sepie further argues that by lessening hierarchies within the biomedical establishment then discourses of health, wellness and illness can in effect be decolonized and the role of the psychosomatic can become more integrated into practice. In short, ‘it is hoped that this chapter may provide encouragement to look more deeply into cosmological constructions that influence how truths are established and power maintained’ (Sepie, 2018, p.83). Seamus Barker and Lorimer Moseley’s essay continues on to challenge the westernized biomedical model, especially as they appear in various editions of the Diagnostic and Statistical Manual of Mental Disorders (DSM). They use rheological and narratological analysis to challenge the implicit power imbalance between clinicians and patients when the psychosomatic is involved in the encounter.

Maria Tutorskaya’s essay shifts the tone towards textual analysis and examines the passage of medical students from lay people to medical students and finally to physicians via what she terms medicalstudentitis, or medical student hypochondria. She explores the phenomena in its depiction in Vikenty Veresaev’s novel The Memoirs of a Physician (1901) and Eric Segal’s novel Doctors (1988). Tutorskaya argues that the psychosomatic experiences of medical students serve as a metaphor for their transition from one internal identity to another, and that ‘the humanizing benefits of literature might not only contribute to students’ cultural niveau but could lead to a more empathic and compassionate practice of medicine’ (Tutorskaya, 2018, p.111).

Olaug Lian, Catherine Robson and Hilde Bondevik’s essay examines how the female body is stigmatized, especially female exhaustion, within society and literature by the largely male medical profession, which has severed to use these medico-moral assumptions particularly about hysteria and neurasthenia from the nineteenth century to the present to essentially enforce gender normative behavior. They conclude that authors have used psychosomatic identities (i.e. hysteria) as a powerful imputes for female characters that cannot, or will not, fit within the prescribed gender normative narrative that society expects of them. In short, ‘[t]he condition has become more medicalized [over time], but instead of removing blame, as medicalization often does, the ailment is now portrayed in a harmfully judgmental manner’ (Lian, Robson et al., 2018, p.125). Then there is Camelia Raghinaru’s essay, which provides a psychoanalytic reading of the television drama The Sopranos (1999-2007). She argues that the “hysterical” symptoms of a number of the characters, particularly Tony Soprano, are the symbolic manifestation of unresolved neurotic conflicts of identity, specifically as they relate to ideas of (hyper)masculinity, ethnicity and class that are a part of American culture of the late twentieth century. Finally, Hannah Tweed’s essay examines the idea of chaos as normal, as seen through Alasdair Gray’s novel Poor Things (1992). Her essay serves to demonstrate the overlap between postmodern aesthetics and ‘the place of controversial mental illnesses and disabilities in twentieth and twenty-first century cultural productions’ (Tweed, 2018, p.142). Tweed concludes that Gray uses ‘the mutability of diagnostic terminology […] [to] challenge the increasingly pervasive stereotypes surrounding representations of cognitive disability and illness in contemporary popular culture’ (Tweed, 2018, p.149).

As a whole the collection spans the full spectrum of the medical humanities, from the clinical to the literary and everything in between. It is somewhat jarring to the reader to move along this spectrum, but this is mitigated by how the essays are grouped thematically. This critique is relatively minor, and can be leveled at most edited collections. Further, each essay forces the reader to re-examine how they understand and what they know about the psychosomatic and its impact in various circumstances, from its origins and perceived validity to the cultural or social background of the participants of an encounter, whether they be clinicians, patients or society as a whole.

 

References:

Farkas, Carol-Ann, ed. (2018). Reading the Psychosomatic in Medical and Popular Culture: Something. Nothing. Everything. London and New York: Routledge.