ON SUPPORTING by Bridget O’Gorman 

In partnership with RTÉ Culture, Project Arts Centre have invited a number of artists, curators, and social activists, with a lived experience of intersectional discrimination, to discuss their practice and share ambitious and provocative new work, encouraging crucial dialogue around the impact of social and economic inequality. In this ninth installment, Bridget O’Gorman shares her experiences of sustaining an art practice with a disability. 

ON SUPPORTING 

On a good day, I can pass as able-bodied.  For instance, I never expose my legs.  My legs are impressively dappled in an ever-mutating constellation of bruising due to regularly veering away from my desired direction and into solid objects.  Because I’ve achieved little in my career over the past year, I joke that they are a work-in-progress, of sorts.   

People sometimes say to me incredulously, isn’t it ridiculous, in this day and age, that there is no cure for your condition?  I am tempted to reply, “but how do you bring back what’s dead.” 

In a previous life, as an undergraduate in an art history lesson, we are asked by a tutor to consider Caravaggio’s The Incredulity of St. Thomas.  The narrative is predictable, whereby Thomas the Apostle could not bring himself to believe that Jesus was resurrected from the dead.  Thomas is quoted: “Unless I see the nail marks in his hands and put my finger where the nails were, and put my hand into his side, I will not believe it.” John 20:25[1]  

Growing up under the blinding influence of Catholicism, I was saturated in representations of pierced skin, of the general omnipresence of great suffering, obligatory blood dripping from every orifice – so the sidelong equivocation of this image (and the duality intrinsic to many biblical artworks oozing with flagrant eroticism) was lost on me then.  What I did absorb was its cruelty – alongside all of the facts about chiaroscuro.  Not just satisfied with observing, Thomas sought to engender further suffering by placing his hand inside the mutilated flesh of his friend, all because this version of events did not fit with his chosen maxim.  Now, as it turns out, I find that I have become adept over time at shifting between shadow and light.  There is a certain irony inherent to the fact that through being repeatedly disbelieved by medical experts I have gradually assumed the stance of someone with something to hide.   

X 

For a long time, my ableist-self has chased the spectre that is my former body.  Because I, inevitably, never catch up with it, this chasing brings forth a mixture of exhaustion, frustration, grief; I struggle, as Dodie Bellamy describes in the context of trauma, to marry the then and the now.  At the time of writing this, I still find it difficult to say that I have a disability.  This particular word feels overly dramatic.  It deposits the aftermath of a lie or a terrible joke in the back of my throat.   

Years earlier I wake in a surgical recovery room to the shot of adrenaline and a scabrous, fat top lip: I have been lying face down for hours with tubing reaching through my throat to breathe for me.  

As the days progress the nurses keep returning to measure my ‘output’ (or how much I can pee), and despite my protestation, my clinicians will not discharge me because my bladder has ceased to operate.  “You’re going to have to let us show you how to self-catheterise, if you want to go home,” one of them states unceremoniously.  

I have required the use of a catheter numerous times. Prior to this particular learning curve, I was familiar with the prosthetic only through other people’s bodies.  I had carefully cleaned around areas of insertion, changed bags, and monitored other people’s ‘output’ for years in a former life: I worked as a nursing care assistant for an agency.   Often covering 18-hour shifts, the job paid for art school and private medical bills in Ireland.  Since then, I have noticed that within my body’s muscle memory there is a caring reflex that engages when I am around anyone I perceive as being in some way vulnerable to the world.  This habit of mine irritates me, alerts me to some undefined prevarication. 

X 

After you are disbelieved, every time a clinician takes your history you are obliged to revisit the interior places you have stored the doubt imposed upon you.  You are, after all, required to recount the story of yourself being disbelieved over and over again.  You are obliged to relive whatever inconvenient trauma occurred and was subsequently ignored.  Conversely, every time these words are uttered and written down in medical notes and stored in files, you are articulating something which you must then repeatedly remove yourself from.  You are conscious of the fact that you are potentially being read as duplicitous or overly emotional.  In order to relay this information accurately, you put distance between yourself and these words.  As you stoke the narrative it seems you could merely be recounting a myth.  Your medical history recited and repeated.  Words are cast and burnished: they ossify into what could be categorised as lore.  Whether or not this lore is to be believed is siphoned through the clinicians capacity to read you, to hear you and to see you.  To pay attention to you.  This is a time-consuming process which serves to define what kind of palimpsest you are now as opposed to what you were before.   

In my early thirties, the roots at the base of my spine were compressed for long enough that eventually, in a formerly able body, I could not walk.  Because I was not believed by doctors and because I could not pay for the private medical care which would have made visible my condition, the pain I presented with on multiple, consecutive occasions was not deemed significant enough to warrant action. When my injuries became irreversible in the wake of this, I had a full-time practice, I was also working five days a week in an art museum for low pay and teaching in the evenings.  I lay on my hospital trolley in A&E, messaging artist friends who might cover my shifts, not wanting to let down the students who had signed up for classes that Autumn. 

Hilary Mantel once wrote, “I have a rooted belief that if you admit you are hurting, someone will come along and hurt you worse.”   My immediate response to this is that I disagree, but as I delve into my situation as it stands, I wonder whether I too share Mantel’s viewpoint; my current bodily configuration comes as a result of overwork and repeated medical negligence.  What if my well-versed habit of not wanting to ask for assistance comes from being denied access to it many times over?   

Now, I grapple with the question of whether or not I will make art through the hand of another.  I am uneasy at the prospect of directing another’s body to my will, particularly when I have directed mine to the point of incapacitation.   

MY WORK i 

The most attenuated fingerprint or water droplet upon a raw clay form, after one moment, invisible to the naked eye, can weaken it, causing it to explode or buckle when fired.  It is possible to alter glass in its liquid form in an instant, by manipulation of temperature, gravity or force.  The ways in which I have attended my work, the work I produce through those materials, requires a level of intimacy and proximity to the body.  Material holds memory, it exists as a medium (both as substance and also as seer) it’s physicality speaks to how it has come to its present state and how its past has implications for its future form.  When the team of surgeons come to my bedside to explain how my emergency surgery had gone, the registrar holds his hand in the form of a cup.  He makes the gesture as though he is shoveling something.  “We had to scoop a huge amount of debris away from the site,” he explains, as I deteriorate inside. 

Often, when my physiotherapist places her hands upon me, she locates the memory of dissonance which I too hold in tendon and muscle.  The tissue reacts to thermal variations, light, touch, even sound.   

It can be an unpredictable process: intuitively tracking the internal complexities inherent to material and flesh.  I hold an MFA in Glass – I am, therefore, somehow conferred with a level of mastery.  I hold a BFA in painting.  I have completed masterclasses in ceramics and slip-casting.  But the fact is that I am now no better placed to master these materials any more than I am my own body.   

X 

MY WORK ii 

Following the birth of my daughter, my legs continue to decelerate as rapidly as she now learns to run away from me.   

I watch as she grows more confident upon her feet, exploring the curvature of the dining table at speed: running repeatedly around it as fast as she can manage. I perch close enough to intervene ahead of impending collision.  

Sometimes, the centralised wires of my spinal cord flicker and spark in such a way that I am obliged to double over, but I always ensure to do this as silently as possible.  In particular, I do not wish for her to notice.  When I embrace my child she folds her body into mine, her arms balanced limply on either side – we are a vessel in momentary calm.  I will wait ‘til her face is nestled safely into my shoulder before allowing my face to snap back into its desired contortion. 

European studies have shown that women with chronic pain are most likely to be assigned ‘psychological rather than somatic causes for their pain’.  This has defined my experience of requiring access to treatment, well before my spinal condition made its presence known.  Perhaps this goes some way to account for my dysphoria in relation to asking for support.  My duplicity goes beyond just hiding my pain:  I have been subconsciously subscribing to the gendered readings which have been so often applied to a body such as mine.  Author of Ill Feelings, Alice Hattrick points towards the notion of being a chronically ill woman as one which is associated with that which is hidden.  Just as studies have shown, she describes a myth “that to be inexplicably ill and dependent on the care and support of others is a choice, a way of getting out of what you don’t want to do, a choice that clever, deceitful young women make for themselves”…she elaborates.. “It makes illness out to be a choice, rather  than a necessity, [which of course is] something only privileged people can afford.”   

All of this covering up in combination with disability, when rubbed up against the temporalities of normalcy feels disorientating.  Concealment, disability and the necessities inherent to care are all repetitive by nature.  Slowness is a requirement within all of these processes, lest, as the nursery rhyme puts it, we all fall down.  This is where I feel most bereaved of my former artist self.  How do I make work now?  How do I forge a way forward when my energy and abilities are so defined by the unknowability of my body’s shifting configuration? I am struck by these limitations in high relief against the development of my daughter’s body.   

As I observe her I am lifted temporarily from today’s overriding corporeal refrain.  My left leg shifts like a rotten tooth in its socket, nerve endings keen to blame.  Focus. I work to control the errant foot slap foot slap foot slap foot slap foot slap foot slap foot slap as I move towards my daughter, I break her fall, as she spins in the abandonment of carefree, first-time dizziness.     

Later, I draft by copy and paste, an email which politely outlines why I am going to have to turn down another work opportunity.  I lie on my toddler’s crash mat and petition my vertebrae for a stretch which might bring some relief, as the song of pain which plays in my body does so in dissonant chorus with the internalised knowledge that I cannot afford to be chronically ill.   

In her book Unthinking Mastery, Julietta Singh problematises the tendency to view ourselves ‘agents of good’ when engaged in the giving of support or aid.  She argues for a disavowal of what she suggests is a propensity within a post-colonial subject, herself included, for always striving to assume (consciously or not) an authoritative or benevolent position.  Singh posits that “Somewhere therein we might also become able to position our own desires and pursuits, which often and despite ourselves, remain deeply entrenched in a logic of domination we have yet to understand how to relinquish.”  Perhaps I am entrenched in ‘a logic of domination’ over my own body and how I use it.  My ‘desires and pursuits’ (that is, to work as I have done up until now) are intrinsically tied to this.  Yet I also sense that there are broader systematic factors inherent to my hesitancy to really show myself as vulnerable to the world. 

Artist Tai Shani discusses the often insurmountable conditions for art workers within an industry of unspoken regimes and understandings.  In an article, she describes how many working in the arts are expected by institutions such as museums and universities to carry multiple workloads without reasonable remuneration to detrimental, burn-out effect – particularly marginalised bodies who live precariously and without generational wealth.  She claims that this is only exacerbated by an organisational stance (in the UK at least) which very often leans from the center towards the unsympathetic auspices of the conservative right. 

Perhaps my reticence about the proposition of making artwork through a support worker is hidden behind a discomfort and unconscious denial of being perceived as vulnerable in a system which is very often hostile to that category of being.  Yet, by denying this reality for myself, I am denying it for so many others who cannot hide it as well as I have done until now.   

There is something about the equipoise of existing between the realms of the then and the now which brings to mind the necessity for stasis: a stasis which cannot be denied any more than the grief which surrounds it.  In Six Ways of Looking at Crip Time, Ellen Samuels describes her feelings around being disabled as a continual moment of remembrance (or at least of being reminded) of all that has been lost or all that is being lost in one’s capacity to do as they wish.  Samuels refers to Dana Luciano’s study of the history of 19th-century mechanisms of grief which, Luciano claims, still sit within us today.  She quotes that “grief was aligned with a sensibility that sought to provide time with a ‘human’ dimension, one that would be collective rather than productive, repetitive rather than linear, reflective rather than forward-moving.”  Similarly, in describing the a-temporal experience of grief upon the loss of her son, poet Denise Riley discusses how this feeling of paralysis does not enable a forward trajectory in life or in work.  “You can’t, it seems, take the slightest interest in the activity of writing unless you possess some feeling of futurity.  The act of describing would involve some notion of the passage of time.  Narrating would imply at least a hint of ‘and then’ and ‘after that’.” 

X 

In Dublin, years earlier, deposited on a hospital bed, I am being wheeled into an anesthetist’s chamber which leads to an operating theatre.  The porter and nurses who have transported me here are distractedly busy, rushing around. They don’t speak to me.  This is an emergency spinal surgery.  I discern mirrored lights through the double doors ahead of us suspended like props from a Sci-Fi movie.  I’ve spent the past thirteen hours lying flat on my back.  I have not been permitted to move, not even an inch, during this time.  Earlier, aware that I am being prepped for surgery, I recall from previous experience that waking from an anesthetic brings forth a sensation which is as abhorrent as the most noxious hangover conceivable.  I resolve to clean my teeth in an effort to mitigate some of the unpleasantness ahead.  When I ask the nurses aide, (who visits my side, ever hopeful, with a shiny bedpan), to pass my toothbrush, she takes a look in my wash bag and informs me that I don’t have one.  Presented with this information, I experience a level of confusion and begin to locate a burgeoning resentment towards her.  Later, I discover that the toothbrush was there all along: that this woman had been instructed to keep me still at all costs.  It was for my own good. 

Now, I become aware of a tall, white, middle-aged man to my right-hand side.  He is very tanned.  He strikes me as someone who might drive a Ferrari and be enjoying the liberation of some mid-life crisis.  Standing over me, he administers a line into one of the multiple holes in my arms.  I am unnerved – not by the gravity of the events to follow – but by the fact that his manner betrays a sense that he knows me, this man that I have never in my life seen or spoken to before.  Backlit by harsh fluorescents, he addresses me in an overtly familiar way.  He seems to be invested in my welfare.  With a queer smile he states cheerily: “You had to shout VERY loud in order to be heard” as he temporarily stops my heart. 

References: 

Gospel of John, New Testament, 20:25 

Dodie Bellamy, When the Sick Rule the World, 2015. Semiotext(e) 

Hilary Mantel, Meeting the Devil, 2010. London Review of Books, Vol 32 

Anke Samulowitz, Ida Gremyr , Erik Eriksson, Gunnel Hensing, 2018. Brave Men and Emotional Women: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845507/ accessed on 3^rd November 2022 

Alice Hattrick, Ill Feelings, 2021.  Fitzcarraldo Editions 

Julietta Singh, Unthinking Mastery: Dehumanism and Decolonial Entanglements 2018. Duke University Press 

Tai Shani, Why Art Workers Must Demand the Impossible, 2020.  Art Review, available at https://artreview.com/why-art-workers-must-demand-the-impossible/ accessed on 3^rd November 2022. 

Ellen Samuels, Six Ways of Looking at Crip Time, 2017.  Disability Studies Quarterly, available at https://dsq-sds.org/article/view/5824/4684 access on 3rd November 2022 

Denise Riley, Time Lived Without Its Flow, 2019.  Picador.