“Was I, then, a monster, a blot upon the earth, from which all men fled and whom all men disowned?”
– Mary Shelley’s Frankenstein (Everyman’s Library, 1992)
LETTER I
To My Readers
“You will rejoice to hear that no disaster has accompanied the commencement of an enterprise of which you have regarded with such evil forebodings” (Shelley, 1818/1992). I have arrived in the liminality of the monstrous, and I must assure you of my welfare. In actuality, I’ve never felt more safe and welcome in this shifting, uncertain realm. I am confident in the success of my endeavour.
I have explored outwith the confines of social norms, outwith hegemonic discourse and constraints. A dangerous enterprise, you might conjecture, but I point to the dangers of falling in line, accepting limitations, and falling prey to prejudice and bigotry. Such afflictions are born out of fear, and beneath this fear is self-interest: we must protect ‘our own’. This is a selfishness (and a fiction – who is ‘our own’? who’s in? who’s out?) that’s plagued humanity for centuries. Too long have we lived narrow, arrested lives. Too long have we forced ‘others’ to conform – such violence! Such wasted potential.
The two-hundred-year-old text, Mary Shelley’s Frankenstein, has inspired these words before you. Shelley’s protagonist, Victor Frankenstein, created a creature and imbued life where there was none. He failed his creation, exhibiting all the faults humanity still perpetuates. In this correspondence I’ll share with you my interrogation of the current Frankensteins, De Laceys and Waltons, of which there are many. I’ll pick apart what we consider to be a ‘normal’ and ‘good’ citizen, my lens focussed on disabled people.
Dauntless, I’ll move beyond the normative, calling for an ontological revolution and a radical episteme as I take you through liminal realms where dichotomous thinking, pathologisation, and hierarchies are broken down.
Here be monsters, but have courage, dear readers – I am confident in the “success of my undertaking” (Shelley, 1818/1992).
Your affectionate traveller,
EVER
LETTER II
“The word ‘normal’ has become one of the most powerful ideological tools of the twentieth century.”
– Ian Hacking
(in Seale, C. Normal/Pathological, Jenks, C. (ed) Core Sociological Dichotomies, 1998)
My Readers,
Edinburgh, the city I left behind to embark on this exploration, has a statue of a man in a white shirt and black trousers outside the city council headquarters. The title of the statue?
‘Everyman’.
This everyman statue was, ironically, condemned as “Political correctness gone mad” (Scotsman, 2007) by deputy council leader Cardownie because its purpose is to represent the working class. Does the working man see himself in the statue? Is he content with the reduction to the category ‘working man’; is that all he is? What of the working woman? Non binary? Trans? Erased – they must make do by identifying with the universal ‘he’. And what of those who don’t work?
Cardownie clearly didn’t consider an ‘ordinary man’ adequate to represent the city, but this stemmed from class prejudice and isn’t the reason I question such banal prescriptive morphology.
If you don’t see yourself in the statue does it mean you don’t belong here? This city isn’t for you? You are rejected, just as the (no name) monster was rejected by Frankenstein and ‘civilised’ society.
As his toils came to fruition, the creature endued with life, Frankenstein was horrified, calling him: “wretch”, “hideous”, “miserable monster”. Frankenstein wasn’t simply stricken with regret at his breach of the ‘natural order’ – he assessed the creature based on physical appearance before fleeing, “unable to endure the aspect of the being I created.” The creature was born into a corrupt world that rejected him, yet it’s the creature who’s positioned as deviant and pathological. Frankenstein judged, classified, and fixed his creation as ’other’. His reaction to the creature’s form, the horror and fear that led to rejection, is what disabled people and anyone regarded as ‘other’ have experienced for centuries in both everyday life and art representation.
If there’s an ‘other’, what defines ‘us’ is the seemingly innocuous word ‘normal’.
Davis (2006) states: “The concept of a norm… implies that the majority of the population must or should somehow be part of the norm.” Non-normative embodiment is policed, open to interrogation; this body must ‘answer to’, must be called upon to justify the breach of the normative, must be brought into line. Linton (2006) highlights: “The medicalization of disability casts human variation as deviance from the norm, as pathological condition, as deficit, and as an individual burden and personal tragedy.” But Davis tells us the problem isn’t the disabled person, “the problem is the way that normalcy is constructed to create the ‘problem’ of the disabled person.”
The ‘other’ is analysed, scrutinised, categorised, pathologised, stigmatised, despised; all a means to organise, to fix the body so it can be read; denying complexity, multiplicity, ambiguity and an on-going narrative. Questioning norms isn’t “political correctness gone mad” (have you ever met a politically correct monster, dear reader?) – it’s revolution.
It’s time; I must continue on and see what effect this concept of the norm has on our lives. Feelings of agitation and foreboding plague me, but I take courage when I think of you, my readers; you are on this journey with me and that thought elevates me, imbuing me with courage. I shall not waver.
Yours, steadfast,
EVER
LETTER III
“Be pure, be vigilant, behave.”
– PCP, Manic Street Preachers/2000AD
My Dear Readers,
After rest and sustenance, I recommenced my voyage. I’ve discovered that ‘different’ people are accepted by ‘normal’ society on the condition they accept normative constraints. Discussing race and nationality, Musa Okwonga (2016) states that acceptance by the dominant group is reliant upon being good: “Even though we had been born here, we were still seen as guests, our social acceptance only conditional upon our very best behaviour.” (See Dr Khairani Barokka’s piece on Disability Justice and Race).
On this journey I’ve found there’s a dominant disability narrative, and it’s that of the ‘good’ disabled; pre-approved, stamped and confined. Yet if you conform, if you play nice, you are still not ‘one of us’ – Frankenstein’s monster is self-educated and articulate, but he still isn’t good enough. In response to the creature’s account, Frankenstein says, “Begone! I will not hear you.” The creature’s narrative is shut down. Never listened to, he’s understandably enraged and bitter, but he says: “I was benevolent and good… Make me happy and I again shall be virtuous.”
Why, dear readers, should disabled people depend on the goodwill of normative society? Why should they endeavour to be ‘virtuous’? Normative society treats the disabled abominably and expects unconditional regard. If you are the polite and ‘good’ disabled and you are allowed ‘in’, you’re the exception that proves the rule; don’t ever believe you are ‘one of them’ – and who would want to be? Who wants to live such a curtailed life, a life built on limiting others?
The creature’s rage makes sense. Disabled people, working class people, queer people, women, and anyone who fails to be white – if they dare react to the status quo with anything other than subservience they’re told they’re wrong for not being good in the face of oppression and violence; they’re dangerous, nasty. Lindy West (2016) notes that society tells women: “Stay indoors. Stay safe. Stay quiet. Stay out of the world.” Just as there’s a script for women to follow, there’s a prescriptive narrative for the disabled – be stoic, be silent; society commends those who suffer in silence. If you’re not suffering in silence then you’re inspiration porn: courageous – overcoming your own limitations (not society’s), you’ve made it out of sheer force of will.
Under capitalism, a ‘good’ citizen is a productive citizen, but what if you can’t ‘earn’ a living?
The UN published a 2016 report condemning the UK Conservative government for committing “grave” and “systematic violations” against disabled people. The inquiry showed that disabled people were “portrayed negatively as dependent or making a living out of benefits, committing fraud as benefit claimants, being lazy or putting a burden on taxpayers.” The inquiry stated that the government’s welfare reforms have affected disabled people’s lives by hindering “various aspects of their right to live independently and be included in the community.” Just as Frankenstein refused to take responsibility for his actions, the government have shirked culpability by refuting the report’s findings.
Coleman (2006) states, “some people are stigmatized for violating norms, others for being of little economic or political value… Stigma helps to maintain the existing social hierarchy.” UK Government Peer Reviews have shown there could be a connection between people’s experience of the benefit system and their subsequent death. Johanna Hevda (2015) asserts this is a symptom of capitalism: “…to stay alive, capitalism cannot be responsible for our care – its logic of exploitation requires that some of us die.”
Disabled people are your holy martyrs – a cross is their exit. The good disabled is the dead disabled.
My beautiful monsters refuse this exit. They will not die for or by your sins.
The performance artist Bob Flanagan was born with Cystic Fibrosis, and despite expectations that he wouldn’t survive beyond childhood, he lived to forty-three years old. His performance art includes satirical songs, a hospital installation in an art gallery, numerous masochistic acts, and a music video. Flanagan’s work breaks down the divisions that ‘normal’ society demarcates between Life/Death, Normal/Pathological, Subject/Object, Public/Private.
If Flanagan had been a ‘good’ disabled person, he “should have” died when he was young. Instead, he sings: “Forty years have come and gone and Bob is still around, he’s tied up by his ankles and he’s hanging upside down, a lifetime of infection and his lungs all filled with phlegm, the CF would have killed him if it weren’t for S&M” (Sick, Dir: Kirby, 1997).
As Flanagan drives a nail through his penis, blood pouring onto a camera lens, we come crashing into the issue of positive vs negative representation through his blatant disregard for playing the ‘good disabled’. He isn’t the sick person who’s stoic, silent, hidden away or the sick person who’s overcome their ‘handicap’ to become a ‘normal’ member of society.
Flanagan lived on his own terms, forging a path into the public sphere – it’s still taboo for disabled people to move into the public realm, to be seen. I’ll convey more of what I’ve discovered in my next correspondence, but for now I’m fatigued and must rest.
Yours faithfully,
EVER
LETTER IV
“It is the world itself that is making and keeping us sick.”
– Sick Woman Theory, Johanna Hedva
My Dear Readers,
I’ve been unable to rest, but feel the weight of my endeavour; I must convey to you the problem with the public/private dichotomy and the impact this has on us all.
Society controls who can and can’t be in the public sphere, mirrored in Frankenstein as the creature laments: “Your fellow creatures… spurn and hate me. The desert mountains and dreary glaciers are my refuge.” The creature lived in a hovel, not fully involved in society, just as disabled people are expected to stay at home or in hospital. If you’re sick you can’t be in the public sphere; it’s made inaccessible. This inaccessibility is engendered through economic inequality, inaccessible buildings, and arts and culture invisibility.
In mainstream culture, life and the ‘normal’ are symbolised by youth and physical and mental ‘fitness’; the body is clean, unblemished, immaculate. Death and ‘pathology’ are symbolised by the ‘imperfect’ body, the disabled, the sick, and the old. Disability and chronic illness reminds people they are mortal, when normative society works to disguise this: “I saw how the fine form of man was degraded and wasted; I beheld the corruption of death succeed to the blooming cheek of life.” The creature is cast out, just as “Nonstigmatized people, through avoidance and social rejection, often treat stigmatized people as if they were invisible, nonexistent, or dead” (Coleman, 2006).
The performance artist Bob Flanagan refused to be fixed under the medical gaze, refused to be hidden away in his ‘sick bed’ at home or in hospital. He re-created his hospital room in an art gallery, and altered a medical training object, using it to demonstrate how Cystic Fibrosis affected him: “My visible man, to mirror me, would have green mucus coming out of the mouth, and sperm, because coming and coughing is about the only two things I do on a consistent basis. Also shitting. Bad digestion has been with me all my life, so I figured my visible man should shit all the time” (Sick, Dir: Kirby, 1997).
Marc Quinn’s collaboration with Alison Lapper also confronts the dominant idea that the sick and disabled should be hidden away. A 3.55 metre marble statue of a nude and eight months pregnant Lapper, who has shortened legs and no arms, was displayed on Trafalgar Square’s Fourth Plinth in 2005-2007 (a blow-up version has appeared at the 2012 London Paralympics and the 2013 Venice Biennale). The statue had an air of strength and pride; it was striking, even shocking for some because we’re not used to disabled bodies being in public in this way.
Lapper’s pregnancy confronts sexual norms and the assumption that disabled people are, or should be, non-sexual. In Frankenstein, the creature asks for a mate, a reasonable request (the autonomy of the so-called ‘mate’ aside) given he’s exiled and alone, but Frankenstein reneges on his promise. His “fear that his monster might mate and produce a race of monsters” highlights the “terror with which the ‘normal’ beholds the differently abled [sic]” (Davis, 2006).
Roy Hattersley said the Lapper statue was “the wrong statue in the wrong place. Trafalgar Square ought to remind Londoners and tourists alike about the glories of our history… rather than personal courage, however awe-inspiring that might be” (Quinn & Rogers, 2006). Ought it? Hattersley is laying claim to Trafalgar Square – declaring it a space for ‘great men’, as if the ‘glories’ of our history are somehow politically neutral. Hattersley felt preached at by the Lapper statue, saying it was “suspiciously like an attempt to teach the uneducated and unenlightened masses a lesson in sensitivity” and accuses Quinn of doing the “people of Britain a gross disservice” if he thinks “this country needs propaganda on behalf of the disabled.”
Disabled in the public sphere: political, preaching, demanding.
Mainstream culture: a fixed politically neutral zone.
Just as Frankenstein’s creature isn’t listened to, Hattersley refuses to ‘hear’ the art. Referring to Nelson, he states, “Trafalgar Square is already a genuine tribute to the way in which the disabled can transcend their handicaps.” The emphasis is on disabled people transcending their ‘handicaps’ – never the violence perpetrated by ableist society.
A beautiful noble statue of a disabled pregnant woman in Trafalgar Square is enough to create discomfort because disabled people aren’t supposed to be visible. Just like Frankenstein, who projected his failings and anxieties onto the creature, we use disabled people as a hidden dumping ground for our own anxieties. Remember too, this statue was temporary – what if disabled people demand to be seen all the time? What if they insist on being a permanent active presence in the public sphere?
Disabled people should be good, stoic, silent.
Disabled people should be non-sexual.
Disabled people should be courageous and overcome their handicap.
These are the approved narratives. Disabled people must not have the courage to speak out against a disabling society. We don’t need their lectures. We don’t want them in public unless they conform to our demands.
I commenced this journey with indefatigable vigour but delineating the constraints and violence of normative society has left me weary. When I recommence my correspondence, it will be with some light in my heart as I explore my hopes for a new world.
Yours, weary,
EVER
LETTER V
“We can no longer allow others to turn our mucous membranes, our skin, into occupied territory. We want to see frigid, imprisoned, mortified bodies exploded to bits.”
– In Order to End the Massacre of the Body, Guattari (1996)
Dear Readers,
It’s caused me much distress navigating through normative society. I’m still weary, but I write to you again to examine what must be done. Dichotomies need dismantled; we must traverse the borderline.
The division between public/private and who belongs where is well policed. The fight is about who owns what space, who has power, who controls the narrative; the violence of this fight takes place at the borderline. By coming out of hidden spaces, monsters breach well-established boundaries. Normative society tells us monsters must be contained; boundary rupture causes fear, panic, uncertainty.
There is a fear of anything that defies categorisation: “Ambiguity and contradiction are the worst transgressions. That which cannot be categorised cleanly deserves no place in the universe” (Bordo, 1987). We are repetitively told there are sharp divisions between humans based on sex and gender, sexuality, class, disability, skin colour, and nationality, but these are constructions, fictions we tell ourselves in a bid to order the world. We cannot tolerate uncertainty, so we create a false taxonomy of morphology. We must fix, analyse, categorise, and stigmatise. Just as Hattersley is defensive in response to the Lapper/Quinn statue, Davis (1995) points out that Frankenstein’s creature is “a disruption in the visual field.” Drawing on Davis, Rodas (2011) states: “The creature’s skin… is an anxious threshold, and his fragmented body ´is a zone of repulsion.’” Skin is the battleground and dichotomies are the means through which inequalities and prejudices are perpetuated.
What happens when skin can’t be read so easily? Anzaldua (2000) asks “What happens to people like me who are in between all of these different categories? What does that do to one’s concept of nationalism, race, ethnicity, gender?” It gives us monstrous “flexibility, malleability,” an “amorphous quality of being able to stretch, go this way and that way… New ways of talking without cementing them, without fixing them forever…”
While monstrousness could be considered a negative identity, it doesn’t have to be. Emil Ferris (2017) tells us: “I always felt like [monsters] were kind of heroic because they were facing something.” Being a monster can be a way to deny society’s constraints: “…the monster becomes empowering… precisely because it cannot be fixed: it is poised on the borders… They exist in a state of becoming rather than a false marker of fixity” (Meskimmon in Burgess, 2003). Monsters are demanding – they break boundaries, open up collaboration, highlight intersection. They come out of the interstices, out of the shadows and into the public sphere insisting on complexity, multiplicity, fluidity, open borders.
Yours, empowered,
EVER
LETTER VI
My Dear Readers,
I lied to you.
I didn’t leave my city. I didn’t need to. Monsters are already here. The boundaries are breaking. The Frankensteins, De Laceys, Waltons, Cardownies, and Hattersleys of this world cannot keep them hidden, cannot spurn them. Their time has come.
This is my final letter to you. You may interpret it as a warning, or a joyous creative destruction.
You may have ascertained this, but let me declare it –
I am monster.
Will you dismiss me as Frankenstein’s monster was dismissed? Like him, I’m articulate, but will you hear me? (And if I wasn’t articulate? Would that make me disposable?)
When I embarked on this journey, there was no trepidation – I do not fear the monstrous. It’s the constraints and violence of the well-guarded public sphere that fills me with dread. The banality of everyday prejudice drags us down, but we rise, we emerge.
Here I am.
I am virago woman – nasty and dangerous.
I am sick, disabled – a bodymind that does not earn a living.
I am Queer – unfixed.
I am scarred – marked in obscene pink, shimmering silver.
I am a queer sick scarred woman and I’m in the public sphere. I am not your martyr. I am not your villain. I am here with my regiment of monsters. We won’t let you make us – we raise a glass to being more than human and we call for an embodied revolution. We have come down from the mountains, out of the shadows, out of our sick rooms – I hold hands with Frankenstein’s monster and all our queer disabled amorphous monstrous allies. I do not speak for them, but walk with them, in solidarity.
We are the monstrous regiment.
We are here, and we are glorious.
Hélène Cixous declares our power:
“When ‘The Repressed’ of their culture… come back, it is an explosive return, which is absolutely shattering.”
Shelley’s monster was not heard, so I shall end my correspondence with his words. In the shadow of human prejudice, he pronounces:
“Man, you shall repent of the injuries you inflict.”
Yours, exploded, amorphous, becoming…
MONSTER
[Originally published by Transnational Queer Underground to mark Frankenstein’s bicentenary. If you need more detailed references, feel free to get in touch]
Fantastic piece. Vital, furious, and true. An ode and anthem to us who gleefully deviate from the norm.
Thanks, Ash! Gleeful monsters unite x