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!
